Stephanie's Story.....

Reflections on January....

2012-02-01T03:54:00.000-08:00

January has gone by so fast. So far we have had a very mild winter. Which is rather nice, but on the other hand it would have been nice to have some snow.

Last week our baby girl was out of school due to strep throat. She started off last sunday stuffed up and running a low grade fever. By early evening we were making the trip up to the emergency room due to the fact her temps were running high and she was sounding more and more congested. By thursday she seemed better. Enough so that we took her to school but apparently did not have a good day. So friday we kept her home from the field trip. As fridays her class goes on field trips. I made a call to our pediatricians office thursday afternoon, and after telling the receptionist that we had been in the ER beginning of the week, she preceeds to tell me that the earliest appt would be Feb 16th. Seriously? Did you not hear my say we were in the emergency room? And we have to wait two weeks for a sick appointment? So needless to say, we are looking at getting a new pediatrician.
It was back to school this week and so far baby girl is having a good week. Although the rear axle seal on our van went, spewing grease and oil over the rear brakes. So now our lift van is in the shop with hopes of getting it back on thursday morning.
One of the field trips baby girl's class did was to Three Bears General Store to go see the black bears they have there. The kids had fun feeding the bears apple chunks and grapes.
Well those were pretty much the highlights of January. Here's to hoping that February is a good month!

Winter Woes......

2012-01-19T02:51:00.000-08:00

We've been having a strange winter so far. Actually, has not been much of a winter. Days were its almost sixty degrees out. Which if fine with me!! I can't stand much of the cold. But then suddenly temps will drop and we'll have real winter temps. I dislike the cold. The worst part of this winter so far is all the rain we've gotten. There is no way we can fall into a drought this summer with all this rain we've had so far this winter.

The other things I dislike about winter, is the bulkiness of clothing one must wear. Although its not as bad as it use to be when we lived up north in Massachusetts. When I remember it being to cold and snowy that you HAD to wear a very heavy coat in order to stay warm. And manuvering around inside a car made you feel like the Michelin man.
Having a child in a wheelchair can pose a few things with winter. Baby girl has a chest restraint to help her sit up more in the chair and its often constantly adjusting them to fit with her bulkey winter coat on. As well as adjusting them to fit when she doens't have the bulky coat on. And with constant temps changing back and forth, one day we'll have to wear the coat, another a light jacket. So out of ease, we've come to put her coat on backwards. That way the straps don't have to be constantly adjusted, yet she has her coat on. The only problem with that is her upper back and neck tend to be exposed.
The second thing I dislike is that the wheelchair lift on our van apparently doesn't like winter either. We have the Braun II Vangater, and although its been a great lift. We have discovered that in freezing cold temps, the lift can temporarily freeze up as well. Usually when we are in the process of lifting baby girl and her chair up and into the van. We'll drop the lift wheel her onto it and bring the lift up. After we wheel her in, and bring the lift back in suddenly it will freeze midway through coming up. So we can't even close the side doors!! ARG! Our best solution so far for this is to let the van run for almost a half hour with the heaters on full blast to warm the lift up. Apparently putting the lift down cold in the cold weather causes something in it to freeze and stick. And its those moments I am thankful, THANKFUL we never went with one of those undercarriage type lifts. Although they do save space on the inside compartment of the van, one has to worry about speed bumps and that as its lower to the ground. And someone who had one of those lifts once told me that in winter it would also always freeze as ice and snow would get into it.

My Daily Updates.....1/18/2012

2012-01-18T03:30:00.000-08:00

Well, today I am hoping to start a new chapter in our book and make a effort to write more. With daily life events, keeping up with errands and such sometimes I have to make a point of sitting for a bit and just relax.
Today we have a meeting with the school for baby girl's evaluation for special education. Hopefully things will go smoothly as I am sure they will.
Wednesday is also her occupational therapy day as school. This year her therapist is a friend of ours, Ms Sarah. Who Baby Girl really enjoys hanging out with. And she is a wonderful therapist!
This coming friday her classroom is taking their weekly field trip. Unlike her old stinky classroom and frumpy old teacher who never took the kids at all on any field trips. Baby girl's new teacher brings the kids someplace each week to experience some type of social interaction. Which I think is very important for kids with special needs. This week they are going to the movies, to either see Beauty and the Beast, or the Chipmunks! Will be fun!!

Our fundraising efforts have begun and Im not quite sure which way to go. And Ill need some help there I think.

And the Fundraising Begins.....

2012-01-15T08:50:00.000-08:00

Well folks, I'm here today to let you all know that we are now going to start fundraising. I don't know how we will do it. So any input would be greatly appreciated!!
First off we are trying to raise 5K to help pay for our trip to the bi-annual Phelan-McDermid Syndrome Foundation Conference. It will be held this July of 2012 in Orlando, Florida. So we are hoping to raise enough to pay for travel expenses (which include hopeful to rent a handicapped equiped van), gas, hotel expense, food expense and to help with tickets to Disney World. Since it will be in Orlando, we have to make a trip to Disney.
Our second goal is to raise another additional 5K to help pay for a new pool, with a handicapped pool lift and enough deck space to accomodate the pool lift and space to manuever our baby girl around in her wheelchair.
I understand raising 10K is alot of money to raise. But hopefully we can do this.

The Transition to Middle School....

2011-08-07T10:28:00.000-07:00

Well, the first week of school has come and gone. My baby's transistion into middle school was fantastic!! Im giddy with joy that my baby seems happy about going to school now. Her new teacher is just fantastic!! I only wish she moved to middle school last year!!

Now, the old teacher unfortunatly is still there "teaching". I use the word "teaching" loosely because she has the title of teacher, but far does that.
This is a woman who upon telling them that our daughter would be getting a Dynavox to learn how to communicate, responded, "why? what a waste of time and money she'll never learn that!!"
What kind of a teacher brings a child to the sensory room to "learn" only to use it as an excuse to sleep on the job and take a nap in the bean bag chair. A piece of crap teacher.

Everyday that we brought our daughter to school, she fussed and cried. When we pick her up from school, she would fuss and cry all the way out to the car. Because the teacher would insist on walking out with us.
On the first day of middle school, our daughter fussed just a bit. But when we got inside and headed down to her classroom, she hardly fussed. After the first day when the new teacher brought her down the hallway, she was quiet and content. The second day of school, same thing. Quiet and happy to go to school. She sat up in her wheelchair, kicking her feet as she usually does when she's happy heading to class. After school again, she was happy and content and kicking her feet. She came home with artwork. The first time in a about three years.
We are so thrilled that her new school and her new teacher are already showing a positive impact on her.

Oral Surgery.....

2011-07-31T13:16:00.000-07:00

Well last week our precious baby girl went in for dental surgery. Unlike most of us, she was admitted in overnight. The reason for this was because in the past after dental work she would not drink anything at all. Especially the time she had 16 crowns placed!! Gosh golly who would want to drink after that!!
We arrived at Childrens Hospital at 5:30 am and they prepped her for surgery. Our regular dentist was there as well as the oral surgeon. The plan was to remove at least one or two second year molars and inspect her wisdom teeth. Now that she is 13 she is close to that age of having her wisdom teeth removed. Also most children who are developmentally delayed for some reason reach puberty quicker that most other kids do. Weird I know, but it happens. So at 13 and having her wisdom teeth come in wasn't really a surprise.
The oral surgeon said if they warrented removing, he was going to remove them now, rather than later.
We sat in the surgery waiting lounge patiently. Several hours later the oral surgeon came out and said everything went well. But had to remove four molars and all four wisdom. The bad side is that the poor kid was going to be miserable. The good side, is that we would have it done and over with and she wouldn't have to go through having wisdom teeth pulled again.
Since she has such a complex diet and lots of food allergies, along with certain meds, we are kind of in a catch 22 situation so to speak. Most of the foods she can eat, along with her seizure and steriod meds, they tend to do a number on the enamel of her teeth.
Not long after the oral surgeon, our dentist came out. He went in after the oral surgeon, and cleaned her teeth as well as did xrays. The hardest thing is that so much is done at once. But the good thing is that she is under the entire time and not tramatized by the whole experience, and they do everything they need to do in as much as one swoop.
She came out of recovery well, but by afternoon was in so much pain that she ended up spiking a fever of 103. Which meant going into seizure alert. Poor kid didn't finally fall back to sleep until 9:30 pm and slept unti 10:30 pm when the nurses had to wake her for her next dose of pain meds. She spent the rest of the night whimpering and not falling back to sleep until 2:30 am and slept unti 4:30 am.
By 2 in the afernoon we were discharged, and headed home. I was reluctant at first to be discharged because I wasn't quite sure if the whole high temperature ordeal was completely over with. Just call it mother's intuition.
Sure enough we were home not even ten minutes when suddenly she spiked a 103 temp again. Needless to say, we went into seizure mode, striped her down to her diaper and I called 911. Some people may think we overacted, but if she's going to have a seizure, I would rather her be in the back of an ambulance than the car on our way to the emergency room. EMT's can deal with that kind of situation much better than us if she gets critical. And believe me, she can get critical.
We got to the ER and the nurses there took her temp again and it read 103.8. Prompetly gave her tylenol to bring the fever down. Then had us go for bloodwork, xrays, and urine. The only problem with the urine is that she wouldn't give it up, so they couldn't test it. But the blood and xrays came back fine.
By 11:30 pm we were being discharged with a prescription for an antibiotic, just in case, something was brewing.
We were home by 12:30 sunday morning. Afer being awake for nearly 42 hours straight!!
Now, here is it a week later and she's back to herself again!! No more extremely chubby cheeks and more importantly no fevers!! Ah, its good to have my baby back to feeling good!!

A Winnie the Pooh Adventure Day....

2011-07-16T07:06:00.000-07:00

So, next week baby girl goes in for dental surgery. It's back to school in three weeks. UGH! Summer has gone by way too fast for me.
But today, we hope to make a grand adventure! Today we will try to take baby girl to the movies to see Winnie the Pooh!! She has never been to the movie theatre and so this will be a whole new experience for her and for us. We don't know how she will react.
Our biggest concern is the sound. Since she does not take to loud sounds and the music in the theatre tend to be on the loud side.
The movie itself we know she will like since she does like Winnie the Pooh.
Now, hopefully we'll make it out this afternoon. Baby girl has been a bit under the weather. Perhaps her tooth. Which is why she's going in next week. Let's hope she feels up for her grand adventure today!

When It All Began......

2011-07-06T14:27:00.000-07:00

Upon the eve of my daughter's birth, her little left clavicle broke in the process of her arrival. Not only hours old, she received her first x-ray. Her first of many. That day, would be the start of a very long journey of up's and down's, of many tests, cat scans, needle pokes, and many tears. Tears of sadness as well as tears of joy.
There she laid in the little glass bassinet in the hospital room beside my bed. The soft glow of the amber ceiling light showered over her like an angel's warm embrace. She looked up and studied it. I looked upon her tiny chubby face, and smiled. My girl was here. I felt so much joy in my heart. God had truely blessed me with a precious baby girl!!

Hoping For Better Days.....

2011-07-02T08:11:00.000-07:00

I am overwhelmed, heartbroken, and angry all at the same time. Is that even possible? I don't know if it is, but Im surely feeling various emotions at this time.
School has gotten on my last nerve! And we've taken the next step to deal with that too. I cannot say much about it at this time. But changes are going to happen.
On top of school, Im still fretting over the neighbors behind us who have no respect for anyone else's right. They are illegals so why would they care anyway. They have been out of work for a month and so their rent is due today. Im hoping they get evicted. The last three years of this rental behind us has been a total nightmare. From tenants with flea infested dogs, to beer parties, to illegals.
Our goal now is to get out of here and perhaps moving to Florida, the land of palm trees and sunshine!! So now we are doing our homework and searching out the best schools for special needs children, housing, job for hubby as well as all the doctors we'll need to find as well as other services available.
Here's hoping for better days.....

Waiting For The Next Step....

2011-06-16T12:06:00.000-07:00

Have filed the formal complaint with school a week ago today. I am now feeling overwhelmed not knowing what the next step is going to be. Have been thinking of what to do, in case they don't go the route I feel is best.

Still pouring over options between two different type of bath systems. The bath transfer or the bath lift. So many pro's and con's to each one. On top of daily to do things to deal with.

Just need to get some things accomplished. Sorry for such the short post. Got to call our nurse case manager.

Feeling Betrayed.....

2011-06-12T10:00:00.000-07:00

After six years of being with the same teacher I wonder how much has transpired that we don't even know of? On our way out yesterday my husband and I had this conversation and how much I felt betrayed. He said the same thing. In fact, yesterday morning I noticed two t-shirts that hubby had gotten from our daughter's school PTO laying on the floor for the trash. He said that he no longer felt comfortable wearing shirts sporting the schools name now that we know what had transpired.
There were people in the office we really liked. Even the janitor as well we liked alot as well. I know these people had nothing to do with what happened. But now thinking of the place leaves a bitter taste in my mouth.
After all the IEPs and the time I told the principal that I wished Ms F could be baby girl's teacher fovever, it sickens me. I did not realize then what was happening.

A Matter of Speaking.....

2011-06-07T12:18:00.000-07:00

Imagine your world where you cannot speak. You cannot say a word except for perhaps three or four words. But imagine if you will not having the ability to speak at all. Be able to speak when your hungry, thirsty, feeling sick, tired or just be able to tell someone how your day was.
This is how it is for my daughter. She is non-verbal except for a few words that she has learned in the last 13 years of her life. "Mom", "moo", "no" and more recently, "mom home....." Those last two years recently have brought be alot of anguish because I didn't realize the true message behind them when my daughter kept speaking them.
Everyday when I went to school to pick her up, her teacher would say how that is all she would say, "mom home." As she would be wheeled out of school in her bright pink wheelchair, she would moan and groan, "mom home.....mom home......" All the way until we got to the van where her grandpa was waiting and where he would get her and her chair inside the van and secured. As soon as I would leave the parking lot of school, often she would quiet down. Put her favorite Tigger doll in her mouth, chew and coo a sign of contentment.
It wasn't after I started putting incidents in order that I realized that the "mom home...." wasn't just a kid who hated school. But a kid who had a good reason for not wanting to go to school.
In the year earlier there was an incident to which I thought was an isolated one. I had gone to pick her up early only to discover the classroom in darkness and all the kids taking naps. All but one. I asked the aide where my daughter was and she pointed to the door leading into a storage room. At first I thought she was in the bathroom for a diaper change as one had to go through this small room to get to the bathroom. But when I opened the door to a room of darkness, I found my sweet girl sitting in her wheelchair shoved to the corner facing the storage shelves.
My daugher is autistic, and non-verbal. Her only way of communication is to vocalize out. She basically got punished for trying to tell them something.
I spoke with the teacher about this who seemed rather lost as to why I was so upset over it. "What should I have done?" was her response. She knows. She damn well better know!! I told her that this would not be a REPEAT or else!!
I thought alot about the teacher, and thought it was an isolated incident. A lack of better judgement most definitly. But then it wasn't until a month ago when another parent told me of their child also in the same class having his arms tied down to his wheelchair because he was hitting himself. Another child who is non-verbal.
We must understand that the non-verbal child doesn't lash out or scream because they are angry. They do so because they are frustrated that they cannot tell us what they need or want. Punishing them compounds the problem.
When my daughter cries out, there is a reason she is doing so. Her dad and I look down a list of things, wet diaper perhaps? bellyache? perhaps something as simple as she doens't like the show she is watching.
Afterall these children are human like the rest of us. They too have thoughts and feelings. Just because they cannot speak doesn't make them deserve to be treated badly, or like inmates in prison.

My Olympian.....

2011-05-05T07:29:00.000-07:00

Last week after all the storms and tornados we had, Special Olympics still managed to go on. Two days later of course, but it still went on.
My baby girl did very well coming home with two gold medals. I am very proud of her!
But what was the best part was her in the 10m assisted walk. She managed to go the whole distance in her walker all by herself!! Woot woot!!
Cleaning up the yard since warmer weather is starting to come in.

25 January.....

2011-01-25T04:44:00.000-08:00

Well, looks like another storm is going to be rolling in. Our plan for the day is to keep baby girl home from school. Foul weather is just not so agreeable with us!! Since it often takes a good ten minutes to lower the wheelchair lift on the van and then put it back up, often there is no coverage for us when the weather is bad. I'm kind of reluctant to take her out in such weather since she seems to catch things so easily. So why mess with Mother Nature?
The Dynavox Maestro came!! What an incredible device! Have not completley gotten familiar with it. So much to learn with it. But I can see already the great options for its use. I found some nice teaching tools on it. Like a "How My School Day Was" page where we can preset some icons and then have her hit the speak button. And then she gets to tell us how her day was. The manual itself is a good inch thick, and I have been slowly making my way through that.
New leg braces have come in as well. May need some adjusting on them as them seem a little tight at the foot for her. But overall things are falling into place.
Anway, the snow will be soon be falling here and I do think it will be a good day to practice and play with the Maestro.

New Year New Starts....

2011-01-19T02:58:00.000-08:00

Been a busy beaver. Which is pretty much the norm for me as well as most parents of a special needs child.
We had a awesome Christmas, although my baby girl did miss alot of school between appointments and being sick and the weather!! We've had an unusual cold and snowy winter so far for the South.
Well our good news is that yesterday we got the new AFOs (leg braces) that my baby girl has been needing. She outgrew her other ones just around the beginning of December which meant no walker time and that is not good. Fortunatly we use a local place that does an awesome job in getting leg braces in rather quickly. I think our longest wait was three weeks. This time we went with cute bumblebees on the cloth straps. And as usual, with new leg braces comes new sneakers to fit with them. Which can always be a tricky thing, cause you never know how the leg brace will fit them until you get them. Most often we end up pulling out the foam sole inside just to give the foot orthotic a wee more space.
I was also amazed to find that childrens shoes now go up to size 6. Before it seemed like they only went to size 5 before having them move into an adult shoe. And yet little kids shoes go up to size 13 before they move into the bigger kids shoes.
Anyway, when searching for a shoe to fit a leg orthtic keep in mind a few things. Get a sneaker that ties. Makes for easier on and off. Also look for a sneaker that the tongue and laces go closer to the toes. So you can loosen up the laces more and pull the tongue out more. This also helps in getting leg braces on and off with more ease. And then try to find a sneaker with a bit wider toe. Something like a basketball sneaker. This gives the toes more room and more room to fit the end of the leg orthtic in as well. When baby girl was little I found that StrideRite shoes worked VERY WELL with leg orthtics!!
Our other good news is that the new Dynavox Maestro that baby girl was so captured with is coming!! We got approval from insurance and we should have it as early as in two days!! My hope is that is comes friday morning before we leave for speech therapy so that we can bring it with us!!
One of our new goals this year is to try to get baby girl to transfer from the sport bottles to a sippy cup with a hard spout. Part of Phelan-McDermid Syndrome is chewing and baby girl has proceeded to keep chewing the plastic spouts off the sport bottles. Not only is it frustrating, and a small fortune being spent each month just on sport bottles, but its unsafe. She has already once chewed, and started to choke on one she bit off. Fortunatly she swallowed it and cleared her airway on her own rather quickly. But it was a very SCARY ordeal!!
Well, that is about it so far. My New Years resolution was to spend more time writing! Let's see if I can stick to it.

~Kat

Pumpkins, Sniffles and Coughs Oh My.....

2010-11-17T03:28:00.001-08:00

Oh that time of year is upon us now. One thing about living down South is that our temps stay warmer much longer than they do up North. It also means extending of the allergy season which is not good for me. But I do like the idea of having warmer temps longer. I am not a cold person.
Halloween came and went and this year my Baby Girl went as Tinkerbell. We had lovely weather for it too. In the mid 70's which is awesome. Growing up I remember having to wear a winter coat over my costume while trick-or-treating, and it seemed fruitless to wear a costume really. Since it got all covered up by the winter coat, hat and mittens.
So this year she went as Tinkerbell, and she looked absolutely cute!! The only problem with her costume was the wings kept hooking on the back of her neck rest of her wheelchair. But her costume was cute. I made it out of poly/satin in a mint green shade sewing up a loose fitted tunic style top and baggie pants to match. I like to make costume so they can be duel purpose, and these I figured she could use afterwards as fancy pj's.
Well, we went to a friends neighborhood for trick-or-treating since our neighborhood is rural and we have mostly cows around us. Baby girl loves trick-or-treating. Even though with all her food allergies she cannot eat any of the candy. Except for perhaps the dum dum pops. We still bring her for inclusion and that is what its all about. Making her feel as normal as any other kid would. And at the end of the night she "trades" her candy in for something special,a new toy or movie.
My goal next year is to incorporate her wheelchair into her costume. Not quite sure how to do this. But I know I'll come up with something. I've seen people dressed as mice, and a block of cheese made from foam or cardboard was made to surround the wheelchair. I thought that was a cute idea! I also thought of making her wheechair a carriage with her in it as Cinderella. My current thought is to make her a medivel princess costume and make her wheelchair the "horse". I suppose its good Im starting to think of this now. It may take me all year to come up with something!!
Needless to say, Halloween has come and gone and now we near Thanksgiving. And with it the colder temps are finally starting to come in. Although Im more of the warm temp person, honestly this time of year its rather nice having more colder weather. There is something about it that gets you in the mood for the holidays. Doesn't it?
And with cold season you tend to run into another form of cold season. The kind we dread. And now, my poor Baby Girl has started with the sniffles and coughs oh my!!
Nothing is more heartbreaking for a parent then to see their child sick and not feeling well.
So sunday morning came around and she just wasn't herself. Not drinking as much and not wanting to eat as much as well. Usually the first signs of her not feeling well. To top that off, she hasn't done much in chewing kitty. And that is a major deal since she loves to chew kitty, all the time.
Monday morning came and she was pretty much just the same. Not as many wet diapers as we would like. So I knew we would have to take it up a notch a bit to get fluids into her. Of course, it meant her staying home from school. Monday night she was feeling better and actually ate her dinner and drank up two bottles of her Peptamin Junior. This is good!! But I know she still wasn't 100% herself.
Now its wednesday morning, and I seriously thought today would be the day she went back to school. But as hubby got her out of bed, I could hear her coughing up a storm and the gurgling of snot in her nose. Yes, she has got a cold!! My poor baby!! Without her speech she cannot tell us how she feels. What she wants. And that can be so frustrating!!
Tomorrow, I am not sure if she'll go to school or not. Friday she has speech with Ms Bobbi. And we will have to wait and see how she feels for that. Next week she has only one day of school before Thanksgiving break. I am hoping she will be feeling better by then. Often she tends to get sick on holidays. So let's keep our fingers crossed that she passes over this cold quickly.

We Need A Ride..................

2010-10-20T03:30:00.000-07:00

http://www.applemobility.com/wheelchair-vans/wheelchair-accessible-full-size-vans.php

Raising a handicapped child is expensive. People who are not faced with the challenges of a family member who is handicapped don't have the slightest clue as to what is involved.
Financially you need to be a millionaire to raise a child with a severe disability. The reality of that, is that majority of parents with a severly handicapped child are not millionaires. So most often we either go without or have to figure out ways to get the things we need just to have a so called "normal" life.
Wheelchairs are expensive. $6000 to $20,000 for one. Augmentive communication devices can run in the thousands. Yearly casting for leg braces run several hundred dollars. And we are not even near what needs to be accounted for when it comes to home modifications and transportation!!
Have you remodeled a bathroom lately? Expensive isn't? Well, try to figure out how to remodel your house to accomodate the handicapped and do it when the person only gets social security. Most often you will find the disabled living in poverty.
And as the mother of a handicapped child I know all of this too well.

We need a new ride. Our current van is a 1999 Ford Econoline with 122,000 miles. It is equipped with a Braun Vangater lift. Installed in 2008. The lift was $5500 and fortunatly I found two agencies who were willing to pay for it. The van, was $24,000 and I had to fundraise the monies to buy that. Why? Because again, Im the mother of a handicapped child with is not only a wheelchair user, but medically fragile. And getting a job working full time to support my child and be at home ALL THE TIME to care for her is not a physical possibility.
My van has been good to us. It has brought us many places. It is our freedom of the house and its a means of getting my daughter to school, her many doctors appointments, therapies, and places for her to enjoy.
But my poor van is now 11 years old and we all know that they can't last forever. My van now has warped rotors and needs new brakes. The ABS light is on as well as the airbag light is on. My SERVICE ENGINE SOON light comes on and off. The poor van has never had a transmission service, because simply I did not have the cash to have it done. I have broken down on the highway with my daughter in route to school and have been stuck on the side of the road for help. Fortunatly we have some very nice Sheriff's Deputies who came to our rescue and made sure our van got to the shop, and we got home safely.

Needless to say, we can use a new or newer van. One that I will not be worried of breaking down with. So, I will need to do what I did with our current van, and start the process of fundraising monies for a new van. I've included the above link to a full size van. I prefer a full size over a mini van mainly for the safety concerns. Full size vans offer more protection in the event someone hits you. Although mini vans may be better on gas, I would rather choose safety over gas mileage. Furthermore, the full size vans offer alot of room to manuver a wheelchair around to hook up to the tie downs that hold the wheelchair in place during transit.

Well, that is it. Please feel free to comment or email me at fiddlekat@juno.com if you have any suggestions or comments to help us in fundraising for a ride!!

My October Musings.....

2010-10-12T03:41:00.000-07:00

Well, I told myself that I was going to write more. But I guess that didn't happen! Just keeping up with daily stuff can get a little overwhelming for me at times!! Its part of being a special needs parent. Sometimes your to do list is much longer than that of a "neuro typical" parent.
So let's see, what is new that has been going on?
We are currently remodeling our family room which in part is my work space or studio. Since working outside the home is difficult for me and most parents of handicapped children, I need to relie on what I can do. And that is for the most part art, doll making, and doll clothes. On top of trying to get back into writing and illustrating.
One of the things about having a family member who is a wheelchair user is that you will find carpet is not friendly. Yes, I know its toasty warm on your toes in the midst of cold winter mornings. But heck its the most pain in the neck thing to clean when it gets dirty!! I have had people tell me that carpet hides the dirt! Yes, it hides it. But the dirt is still there. And for me that is not good enough. I've become somewhat a germ-a-phobe. It happens when you have a child with a comprimised immune system. Can you imagine wearing a piece of clothing and not ever washing it? I think carpet in the same manner. Vaccuming just sucks SOME of the dirt out, but doesn't clean it. And furthermore, with a child in a wheelchair every time we have bad weather am I going to keep her stuck in the house? Wheels on wheelchairs bring in dirt and I don't need to be constantly shampooing a carpet cause it has mud tracks across it. Needless to say, we have rid our home of nasty carpet and replaced the flooring with either floating wood laminate and ceramic tile. I love it!! With the family room being the last room to finish up!! YAY!
Two weeks ago we met with the Dynavox rep during one of our visits with the speech pathologist and we are now getting the Maestro for Baby Girl. Awesome device!! With an autistic child sometimes there is not much that grabs thier attention. But this device held her attention for a full hour and a half!! If your a parent of a child who is non-verbal Dynavox may be something you want to check out! We are quite excited that Baby Girl is getting one and we hope that it opens up a great deal of opportunity for her!
Lastly, my book Stephanie's Story: Love Knows No Handicaps will temporarily be unavailable. My contract with my publisher is expiring and I did not renew my contract. I am however, planning on republishing the book myself and will be bringing it back!!

Pet Peeve #2: Treating a Handicapped Door Like a Toy

2010-08-18T10:47:00.000-07:00

Here's my pet peeve number two. Number one is people who park in handicapped spaces when they shouldn't. But my number two pet peeve, is people who think its fine to allow thier small children to play with the door switch that operates the accessible door. Or adults who are too lazy to open the door manually.
There is a reason there is a handicapped accessible door there. It's to allow those who are wheelchair users, or perhaps use a walker, to easily open the door and wheel themselves in.
What's the big deal? you ask!! For one, it wears the door out and yes, there are even times when it causes the door to break. Do you know what happens when the door is broken? It means those who are wheelchair users, now will have a difficult time in getting in and out. All because of someone else's stupidity. Yes, I'm the parent who will yell at you when you allow your toddler to keep hitting the automatic button. Because 9 times out of 10, when the door breaks, its parents like me who have to utilize that door for our child who uses a wheelchair. Have you ever tried wheeling a 70 pound kid in a 60 pound wheelchair through a door with one hand, cause your other hand has to open the door?
I don't know how many times the accessible door on my daughter's elementary school is broken. All because of stupid people who allow thier kids to play with it. Even adults who think its okay to play with it. The custodian of her school has fixed the door countless number of times. And as of late, the door is now so screwed up he said that its going to take a technician to come out and fix it. All at the exspense of the school dept. Whose budget is already strapped for cash. Yet the same parents who allowed thier kids to play with the door, would be the same ones who bitch and complain about the county costing them so much money!!
Okay, my rant is over!!

My Daughter Has Autism, What's Your Excuse?

2010-08-02T04:01:00.000-07:00

I think of myself as being thick-skinned. Most people can say something to me, and I'll either fluff it off or say something sarcastic back at them. I was never like this. Growing up I was meek and quiet. And everyone knew me as someone who didn't speak up that much.
Now having a child with multi-handicaps, and including Autism, I have become an entirely different person. And for the better. I thank my daughter for that. She has taught me to be a much stronger person with a can-do attitude!!
So we were on our way home from the conference when we broke down with our van. I have mentioned this in my last post. About making it to a McDonald's and sitting their for three hours waiting for help. My hubby trying his best to fix the van and make phone calls. While I and our Sweetpea stayed inside the restaurant trying to keep cool. It was well over 100 degrees outside. And since she suffers seizures, staying out there was not an option.
Not only did the staff not respond to us and offer any assistance in the least bit, but I had to deal with them gawking at my daughter who displayed some of her Autistic behavior since hanging out in a McDonald's for three hours is not part of her routine.
I made phone calls to the corporate office of McDonald's who promptly apologized and sent us two coupons for free value meals. Big deal!! Who gives a rat's patootie about your stinking coupons McDonald's!! I certainly don't!! How about this? How about making sure your staff has some sensitivity training! Which is what I suggested to the Corporate Officer I spoke with. Or how about this? Making the handicapped door actually accessible with a automatic door! Instead of just slapping a handicapped symbol on the door! That doesn't automatically make it accessible you know. Taking a BMW emblem and sticking it to the front end of a Chevy is not going to make than Chevy a BMW now is it? So why sticking a handicapped symbol on the door is going to make it accessible!!
Anyway, my point being is that my daughter is Autistic. Her behavior is normal, for her. Just like any other child with Autism, thier behavior is normal for them. They are not bad children. They see thier world differently than what others see it. But that does not make them bad. Spanking is not a cure for Autism, nor is thier a pill for it either. So people, keep your stupid remarks to yourself and your stupid gawking and looks. Instead open yourself up and understand and learn about Autism.You may actually learn something!!
I think I would like to make a t-shirt that says, "My Child Has Autism, What's Your Excuse?"

It's My Breakdown and I'll Cry If I Want To!!

2010-07-26T03:55:00.001-07:00

I am the type of person when things get so overwhelmed and stressed out for me, I do one of two things. Sometimes both. And that is to have myself a good cry and I get very testy at others. I admit that.
Now, as a parent of a special needs child we face much more challenges than the neuro-typical parent. Our stress levels are higher. And I don't care what any neuro-typical parents would say in disagreement with that. It's the truth!! Any of you with special needs children will agree wholeheartedly with me! Although in many ways we are still "normal" our challenges are definitly different, but they are also more overwhelming and stressfull!
On our way back home from the 2010 PMSF Conference we broke down with our 17 year old van. You may wonder why we drive such an older van. But again, those of you with severely handicapped children understand that one of the biggest issues in raising a child with so many needs is the financail burden. Neuro-typical parents don't understand and/or underestimate the cost involve such as leg braces, wheelchairs, ramps to get them in and out of the house, vans with LIFTS!! Majority of this does not come cheap! And I've been asked WHY? can't I afford a $40,000 van and a $5500 lift to put into that van? On top of everyday bills, such as mortgage (yes, we need a place to live too you know!) utilities, car insurance, house insurance etc etc. Not to mention the fact that most often families with a special needs child with so many needs demands that one parent stay home to care for that child.
Believe me, I've had people think that my husband and I should have one of us home to take care of our daughter, which I agree with. But don't understand why we can't pay for all of this with just one income? How many families neuro-typical or not do you know live today on just one income? Compound it with a family member requiring lots of medical attention.
So, there we were driving home from the Conference. When our van decided to start to overheat and sputter! On the highway, in the mountains of North Carolina. Oh my!! I prayed and prayed! Hoping that we would make the trip home. We only had to cross the mountains into Tennessee, and we would be on the homestretch!!
After pulling over twice and hubby adding coolant we finally ended up off an exit, at a McDonalds in Strawberry Plains. Long story short we spent 3 hours there!! And I hope to never step foot in another McDonalds again. At least that one anyway!! Talk about horrible. The people were rude!! Hubby dealt with the van, making phone calls to whomever we could think or remember thier phone number. While I took Baby Girl inside to keep her cool. The temps outside were around a humid 100 degrees, and both of us do not do well in heat.
We sat inside the McDonalds trying to cool down. But she kept fussing, and fussing. Afterall hanging out in a McDonalds for 3 hours is not part of an Autistic childs routine. And I was at the point of stress and feeling so overwhelmed that I broke down and cried. Yes, all the while in the restaurant and not one person bothered to come over and see if we were at least "okay."
Hubby finally got a hold of friends of ours,who drove up to help us. Fortunatly we were only an hour or so away from home. And after adding coolant to the system, followed us back home to make sure we didn't have any more problems. The downside is that our old van is going to have to go into the shop. But the upside is that we got home after 3 hours wait, and we know who are greatest friends are!
And if ever you have a moment you feel like you need a good cry, go ahead and do it! It will do you good and after all, we all are entitled to a good cry every so often.

PMSF Conference....

2010-07-26T03:46:00.000-07:00

Well, it was a fantastic weekend with attending the Phelan-McDermid Syndrome Foundation conference. It was held in Greenville, SC and what a pretty place it was!!
This year was our fourth conference, and as usual there is always new things to learn and discover, as well as new friends to meet! The best part is meeting other families whose children have the same syndrome and UNDERSTAND what your going through!!
We arrived thursday afternoon, with Baby Girl having a major meltdown requiring her to basically stay in the hotel room, to chill. We've discovered that after an hour and a half traveling, she is usually pretty much over the travel part of any trip we go on. Despite our efforts of trying to comfort her with her favorite shows on dvd and the portable dvd player, and her well-loved stuffed kitty.
Some of the sessions we attended that were fairly new for us was Seizures, Legal and Financial, as well as some ones that they had before. Like the Moms Session and the Dads Session.
There were two families from Brazil, one family from Costa Rica, and another new family from Australia. As well, other families from the UK and Ireland. In all I believe there were well over 400 attendees of the conference.
Saturday night we spent the evening outside on the ground of the hotel playing baseball with the kids. Who throughly enjoyed it!!
Sunday came with much bittersweet. As much as I enjoyed ourselves, and the time spent with friends, we didn't want to leave, but also was looking forward to getting back home. And being able to sleep in our own beds!!

Phelan-McDermid Syndrome 2010 Conference

2010-07-21T17:16:00.000-07:00

Well, another conference is apon us. We leave tomorrow and head out to South Carolina for it. Looking forward to seeing families that we saw two years ago, as well as meet new ones. Last year's conference brought in just over a hundred families from all over the globe.
One of the key things about the conference is that we parents get to learn something new. Whether it be communication, trusts, caregiving, and the opportunity to connect with other like families whose children who have Phelan-McDermid Syndrome.

We've spent the day getting ready for our trip. Since taking trips is not the norm for us. We have to pack more so than the average family. Making sure we have all of Baby Girl's foods since she can't eat from other places due to her severe food allergies. Making sure we have packed her dvd library, and of course, the portable dvd player. By far that has been a great investment!! Since she is on the autism spectrum her attention span is very limited. Unless of course its one of her favorite videos, she'll give it all her attention. Even at dinner time, the player will sit on the table going. I know some parents may frown apon that. But with a child like her, its either that or have her be frustrated. And with frustration comes alot of her cranking.

Well, its off to pack some more!!

Please People Staring is Rude....

2010-06-23T10:11:00.000-07:00

I will be honest and tell you that one of my pet peeves is being stared at. Afterall, who likes to be stared at? No one. So why do people do it? And why do parents allow there children to do it?
We went out as a family on sunday to a nearby amuzement park. One of the things we wanted to do was look at some of the little shops inside to see if we could get a replacement kitty for baby girl. Kitty is a stuffed tiger kitty with a very long trunk of a body on it.The one she currently has, she has been really loving on it. Poor thing looks like its ready to fall apart, and I can't tell you how many times I've repaired it. But she loves it!! Kitty goes everywhere with her. Kitty sleeps with her at night. Kitty goes to her therapies. Kitty goes to the doctors. Kitty even goes to school. Everyone that knows how, know all about kitty and how important it is the kitty is not left behind. Anywhere!!
So, we went into one little shop only to discover that they no longer carried kitty to our dismay. We ended up buying another cat stuffed animal with long lanky arms and legs hoping that at some point, she will be willing to make that one a replacement for kitty. We made our purchase and started to head out.
Just as we started to go through two displays, my hubby pushing baby girl in her wheelchair ahead of the two of us. Some kid walks up and stands right in front of us. Blocking the way. Since there is a display on either side of us, we couldn't move right or left. But this kid just stands there staring at us, and blocking our way. So we couldn't even move out the door to leave. The entire time mom is at the check out too busy flapping her gums to notice that her kid is being rude.
So, I do what the kid does and stare back at her. Hoping that maybe, perhaps it would teach her a thing or two about staring and how uncomfortable it makes someone when you stare at them. Usually my common response is this, "take a picture it'll will last longer!"
I don't mean to be rude. But sometimes you just have to do it. And it wasn't like it was a small child who didn't understand. But a kid who was old enough who would know some manners!!
Often it happens we get stares from people. And I've gotten to the point of either being rude back to them, or giving them the stare. I stare them down and then they realize they are being stared at right back. Yeah, makes you feel creeped out doesn't it when your being stared at.
My daughter isn't going anywhere people. She's going to be a part of her world just as much as everyone else is. I'm not locking her up somewhere out of view of the public, who for the most part are idiots and don't know how to conduct themselves around other fellow human beings. I'm seriously thinking of doing up some type of t-shirt with some snappy comback comment on it for people like that. Just haven't thought of a good one yet. But if you think of one, please let me know!!

Oh Philly Swirl I Love You!!

2010-06-13T15:38:00.000-07:00

Its not often that I can say that I LOVE a company. But after discovering Philly Swirl quite by accident, I have to say that I really love em'. Why? You may ask. Simply because of the fact that manufacture ice cream, italian ice, and popsicle products for those who have slews of food allergies!!
As a parent of a child with severe and umpteen number of food allergies, finding stuff for them to eat seems to be an impossible quest. Even finding simple things that most parents take for granted.
For instance, the birthday cake. Imagine trying to hold a birthday party for your child, knowing full well that cake you ordered cannot be consumed by your own child? Yes, imagine that birthday child not being able to share in thier own birthday cake!!
This is the case for my baby girl. Having a food allergy to peanuts, soybean, eggs, wheat, whey, casien, orange and tomatoes finding stuff for her to eat is an impossible quest!! So its quite no wonder how excited I get when I do find something that she can eat. Even something fun!!
For awhile we were getting her Breyer's All Natural Vanilla ice cream. It seemed like the only ice cream that she could eat. Until I went food shopping last week and discovered to my dismay that it now contains egg. UGH!! Fortunatly Im such a stickler for looking at ingredients now, that not an item gets overlooked. Even if I have bought it twenty thousand times already. I still look at the ingredients. Cause you know, you never know when the company will change them.
So there I was going through the ice cream isle, opening doors and pulling out items, and reading labels. I must have spent a good half hour to fourty five minutes in there. Opening, pulling, and reading. My baby's birthday was coming up, and I so wanted to be able to find her something fun that she could actually eat while everyone else was eating HER birthday cake.
By the way, I've gotten inventive. You tend to do that with a child with food allergies. I made a Jello pudding cake, by making a layer of Jello pudding, a layer of Redi Whip, another layer of pudding and a final layer of Redi Whip. Redi Whip is strictly dairy, whereas Cool Whip has soybean oil in it. Froze the entire thing, and she had basically a frozen pudding cake.
Anyway, there I was scoping out the ice cream isle at Walmart and I see a box of italian ice. On it says Philly Swirl, and it says Peanut/Tree Nut free, soybean free, dairy free, and gluten free. HOLY COW! I bought a box of six which came in a variety of fun and yummy flavors. Like cotton candy, which she absolutly loved!! I went online to www.phillyswirl.com and discovered that thier goal is to make thier products as allergy free as possible!! This does not happen often, and when it does it excites me. My baby can have something fun to eat!! And this makes me one happy mom!!

Intense Therapy Sometimes Isn't Always Good....

2010-06-10T13:03:00.000-07:00

That is what I was thinking originally. That my baby girl would benefit from having an intense therapy program over the summer.
Like most summers the last few years, we decided not to put her into the summer program. Some parents do this to help maintain their childs therapies and also keep them on a schedule. Since most children with special needs thrive on consistency. However, our first year here, we went into the summer program with a new teacher and new kids. This would have meant Steph getting use to a new teacher, and new kids in a very short period of time. The other reason we backed out was because the teacher and aides were oblivious to her seizures and her severe food allergies. The kicker here, was when we told the teacher about the peanut allergy. Her response,"well I won't bring any peanut product into the classroom, but I can't stop parents from bringing it in with thier kids." WHAT?! So, basically what she was telling me, even though she knows darn well my child has a peanut allergy, she would not stop another person from bringing that allergen into the classroom. First off, it would be illegal for her not to do anything about it. And secondly, I would not leave my child there knowing that she was going to be so lack about it.
So, with that, we decided not to bring her to summer program.
Instead, we booked to have medical based therapies over the summer. Along with us bringing her to school just for speech services, and staying with her and taking her home when the speech session was done. We've done this every summer now for four years and it has worked out well! In fact, she always seemed to go back to school for the regular school year, refreshed and a step ahead.
This year we decided to add more therapy, and at first I thought it was a great idea. Since most often by the end of the school year, she's souring a bit and getting frustrated.
So, this year we scheduled her for pool therapy on monday, land therapy and speech on tuesday, wednesdays off, speech again on thursday and friday, one more day of land therapy. Well, I have to tell you that after a week we were quite busted of that routine, and ended up dropping her tuesday land therapy. It's working out a little better.
It's important to keep the therapies going over the summer. But in my opinion, its also important to allow the child to have some downtime as well.

Going Botox.....

2010-05-28T07:23:00.000-07:00

Visted the pysio doctor yesterday. Can't really say what a pysio doctor does exactly, but they are usually the ones who coordinate therapies, and medical equipment needed. As well asses for which therapies and equipment would work best.
As usual, Steff gave her pysio Dr. W a workout. Dr. W is a little woman, and probably the same height and weight as my baby girl. So often Dr. W is pretty worn out after our visit.
She had suggested Botox injections. And today we had physical therapy with Martha. Martha is an awesome therapist!! Works baby girl's behind off, but it is what she needs! She agreed that the botox would work well for her. Since her hamstring and quads are tight.
Today she worked on sit and stand for transfers and then we got her into her Rifton Walker. We had taken off the trunk support for awhile since she seemed like she was doing well. But decided to put it back on. For now she's been leaning too far forward and not walking. With the trunk support on today, she did very well. Stood more upright and did more walking.
Martha explained that since her hamstring is so tight that it tends to pull her into a more squatting position, thus making it harder for her to stand more upright. Overall she has low muscle tone. Except for her hamstring and quads.
Now, we've never done the Botox route. But from what we are hearing that they do a great benefit to those with the muscle tone issues and loosening up muscles. Enough so that stretching is done less effortless and without as much pain.
I think we are going to try it. We hope that it loosens her muscles in her quads up enough and her hamstring to allow her to work on more sit to stand, and walking with much less effort!!

Bob and Larry.....Two Veggies you just got to love!!

2010-05-24T15:32:00.000-07:00

If your familiar with VeggieTales, then your familier with those two loveable little vegetables known as Bob and Larry. If your not, then I suggest watching them. They are great!! Even for us adults!! Most of thier tales are bible based, something I like, and prove that a show can have a good dry sense of humor without being vulgar and gross.
My baby girl loves them! I think she has every episode, show and movie on dvd. Every night after supper, she has her after dinner VeggieTales. A ritual which we have done, so many times that I've lost count.
Moe and the Big Exit is a spin off of the Lone Ranger, except Larry is called the Lone Stranger. There is a scene where they are running off, and since they are Vegetables (no legs you see) they hope instead of actually walking. But its here that sends my baby girl off in a belly roll of laughter.
There songs, are addictive. "I Got No Bellybutton" being my favorite, and there's the cheeseburger song. Another favorite is the Yodeling Veterinarian. And whenever the songs are playing, baby girl can be found sitting in the middle of the floor doing her little wiggle butt dance. Even though she can't walk she can still dance!!
She's got a few books and coloring books with VeggieTales. But her dvd's are a blessing, not only to her, but to us as well. She enjoys them! I don't love VeggieTales just because there VeggieTales, but because they do bring my baby girl so much joy!!

A Second Book to the Story......

2010-05-23T08:33:00.000-07:00

I have been debating over the last few months about wanting to write a sequeal to Stephanie's Story: Love Knows No Handicaps. Since Stephanie's Story is one that is always changing and growing just as she is, that I thought sharing that with my readers would be a worthwhile venture.
So, five years ago I began working on a manuscript titled Long Journey Home. A story of our lives moving from the state of Massachusetts to Tennessee. I know at first it doens't sound like much of a story. But the details behind it, and what brought us to it, and how we faced it was not of the norm. You see, most people have a reason for moving to another state: family, job. But we had nothing. No reason in the world to move to Tennessee, except that we loved it there. We had no friends there, no family, no roots, no job. So when we decided to pack up and leave and head to Tennessee, most of our family and friends basically thought we were nuts!! We envisioned ourselves like modern day pioneers. Heading out to the unknown and only hoping that things would work out.
Well, I can tell you that here it is five years later and we are still here in Tennessee. Things have changed!! And along the way we've had our ups and downs.
Now, Stephanie is now becoming a young lady. Much has transpired over the years for her as well. It has been a whirlwind of emotions, and journey's, and adventures to say the least. But I think its time for me, to cut myself some time to write again. I had a manuscript called The Road Apple Diaries, just about finished. Except for the illustrations. A small book of short stories about the horses in my life that inspired me as a horse artist. That will come in time as well. But I am going to start writing again. I just need to find the time!!

Our Summer Program.....

2010-05-22T08:05:00.000-07:00

Summer break has just started for us. For many parents its a time of year where the stress is a little more. Since its when most parents have to figure out placement for thier kids during the day while they go to work.
For us, summer is a period of medical based therapy that we try to utilize as a booster for our daughter. During the school year she recieves physical therapy twice a week, occupational therapy once a week, and speech twice a week. When she first started out in a private school for handicapped children all services were three times a week. And the school had in-house therapists who did a tremendous job!! Now that she is in public school, quite honestly the therapies she gets is not nearly as good. Therapies as school are not medically based. In that the therapist don't do the same as they would in a medical setting. Like stretching and exercising of the muscles. Most often at school its a matter of placing her in her Rifton walker and bringing her for a walk. We can do this at home! What she needs is some intense therapy. So since moving here five years ago, we have eliminated summer school and did "our own thing." So to speak. And honestly, it has worked well for us thus far. The down side is that she does not have the same amount of interaction with kids her age. But that is a simplified thing to fix.
During summer, and using this year as an example, we have scheduled her for pool therapy once a week, and then two more days of medical based land therapy. So in fact, she'll get three days of pt. No occupational therapy. Which is okay. We can work on the hand over hand skills with her at home. Since we do that on a daily basis anyway. Her therapist does more sit to stand transfers with her, as well as the stretching what is important. And the pool therapy is awesome as well. A benefit of having a pool at home as well!
Two days a week she'll attend speech therapy. Which will be held at her school, and although we bring her and stay with her the time she is there. It's brief moments were she does get to interact with other kids.
Being an artist, I'm constantly wanting to do artwork with her. And this is also where the occupational therapy comes in at home. I plan out projects to do with her on the off time while we are home. Either painting, or doing cut and paste projects that entail some type of sensory involved in the art project.
We found that is schedule works best for us, and most often she goes back to school refreshed. Being able to have time off from school yet she doesn't regress. Since we do keep up with the medical based therapy over the summer. However, by the time school gets out, since they don't do as much with her. She does seem to regress a bit near the school's end. But going into medical based therapy over the summer seems to help her regain what she did lose, as well as gain a bit more.

My Trip to Holland......

2010-05-21T03:08:00.000-07:00

Becoming a mother, especially for the first time, has to be one of the most exciting moments in a woman’s life. We spend countless hours before the birth, preparing our “nest” so to speak. Gathering much needed items, layettes, bottle warmers, and the such. Redesigning a nursery. And of course, trying to pick out the best suited name we can think of. But there is nothing that can ever prepare the mother to be, whose child is born with a disability. There is a story called “Going to Holland” whose author escapes me at the moment. But one can google it and find it. The story line compares expecting parenthood with taking a trip to Italy. You learn all about Italy, get books on it, and read up on the culture, the foods, etc. So that when the day comes, you know a lot about Italy and are prepared for Italy. However, the plane lands and you get off only to discover your not in Italy, but Holland. Much like expecting a normal healthy baby, only to find after the birth, something is not right. Now you must learn about Holland. What Holland is like, and what their culture is like.
As a mother to a special needs child who was born with a rare genetic birth defect. One that has left my daughter in a wheelchair, developmentally delayed, non-verbal and with several medical conditions. I was not prepared for Holland. What kind of challenges were ahead for me and my husband. She was our first child, and so, I did not even have a clue as to raising a child period!! I had plenty of resources between my own mother and mother-in-law. Both of whom are great mothers themselves. And I could ask them anything I wanted or needed to know. But even them, did not know Holland so could not tell me anything about it.
My husband and I spent months in worry, anticipation, fear, and basically on a roller coaster of emotions for 18 months. When finally our daughter was diagnosed with Phelan-McDermid Syndrome. Also known as 22q13 Deletion (www.22q13.com). All those months of wondering why she wasn’t making milestones, the sitting, the crawling, the feeding issues, the constant respiratory issues, the tests, all that finally came to head with a diagnose. Some say its not important to know what the disability is. But it is. For you see, a parent of a child born with a disability, you go through several stages. First is the denial stage. You deny the fact that your child is disabled and that everything will be fine. The second stage is a mourning stage. For you mourn that so called “perfect” child, who may never run, play, sing, say “I Love You”. Verbally anyway. The child who will never get married, and bring you grandchildren. Then there is the angry stage, and you ask why?
And finally, the final stage which is acceptance. And this is the stage where you, the parent realize that although you have your weak moments, you feel strong, and take on the world! This is the stage that you realize that although your child has a disability, they are still perfect in every way. You learn that they have their own personality traits, likes and dislikes and parenting the special needs child is no different than parenting the so called “neuro typical” child. It’s just that your challenges are a little different. This is the stage where you advocate, and advocate as good and much as you can. You want to teach the world that having a disability is nothing to be ashamed of. The stage that you thank God for blessing you with such a child. Who not only has brought you a wealth of experience, knowledge, but patience, love, joy, and the fact that if you had to do it all over again, that Holland in deed is a wonderful place to be. Yes, its different. But its not a bad place to be.
Our daughter will be turning 12 years old this June. She’s heading into her pre-teen years. And like a typical pre-teen she tries to test her parents patience. She’s becoming a beautiful young lady, from an adorable little peapod of a baby with a mop of curly hair. Her food allergies, much of which caused a lot of her gastrointestinal issues is under control. Her seizures are under control with medications. She’s been learning to walk with a walker. She competes in Special Olympics and thus far, as won 12 medals. She was a Girl Scout. She loves to bowl. Especially in her bare feet. She likes to sleep in on school days, and she’s gotten good as saying NO! One of the few words she has learned to say. And even though she enjoys most veggies, peas she still refuses to eat! She has her good days and her bad days. She loves watching videos. She likes the swimming pool. She in reality is no different than any other kid. Except that she see’s her world not only differently, but from a wheelchair. And parenting a child with a disability in reality is no different than parenting a child without a disability.

Note: My cousin Pinky whose blog is: www.pinkyrn.blogspot.com asked me the other day if I would be a guest blogger on her blog. Since she's one of my most favorite of cousins, I said yes!!
She also has an Etsy and Zibbet shop, like myself, since she's very artistic as well!! Check her out, you'll enjoy her writings as well as her stuff that she makes!!

It's Okay To Ask........

2010-04-19T16:38:00.001-07:00

It is quite obvious that our daughter has a disability. Her bright pink wheelchair is often the first give away of her being disabled. And then you see her contently chewing away on one of her favorite stuffed toys. Or vocalizing words that no one else can understand but us.
We see the aprehension on people's faces, as they start to approach us. You can see them wanting to ask but are somewhat hesitant. They are not sure of how we, the parents will react. "It's okay to ask," I tell them. For them inquiring tells me that they are interested in learning, and knowing about her syndrome. And to want to know more about it, they want to learn about her, the person.
Sometimes my tears fall quite easily and quickly. Sometimes its because my day has been hard. Because her day has been hard. For whatever reason it may be, sometimes she just has off days like the rest of us. Afterall, she's a person like all of us and experiences they same things that everyone else experiences. She thinks, feels, cries, laughs, has joy, has fear, has anger. Just like the rest of us. Why wouldn't she? She's human. She's a living human being. Not a disability. Even though she is disabled, she is a person with a disability. She is not the disability.
It's okay to ask, because you see I am not one who is ashamed of my daughter. In fact, I am proud of her. And I want the world to know, to understand, that my daughter is the greatest gift that God could have ever bestowed upon myself and my husband. In His eyes, she is perfect!
What brings me to tears is the "I'm sorry....", the "oh what a shame!". Shame?! Why is being disabled shameful? Someone who commits a crime is shameful. Someone who commits a sin is shameful. Someone who steals is shameful, or lies is shameful, or commits adultery is shameful. But saying "what a shame!" to someone who has a disability, is like saying they're horrible for being who they are.
Stick her in an institution. Adopt another child. Have a normal life. This is what brings me to tears. It rips my heart apart to hear such suggestions. Even if they were innocently said. They are still words that hurt.
I am not ashamed of my daughter. The brown haired, brown eyed beauty that she is. Her quirky little crooked and toothless smile she bears when something funny crosses her mind. The joyful noises she makes when she has her favorite stuffed cat by her side, and in her mouth chewing. When she sits on the floor watching her favorite VeggieTales, and the tune begins she starts the little wiggle butt dance she does. And even though her vocabulary is limited to four words at the time, I love to hear them each time she says them. And every animal she sees, she say's "moo." Or how sometimes she likes to take her sippy bottle and try to feed her stuffed kitty fruit punch. Or try to drink her sippy bottle at the same time she's chewing kitty.
You see, she's a person. Not a disability. A disability doesn't experience, or not experience life. It can't. But a person who does has a disability, can experience life. And as full as anyone else can.
In God's eyes she is perfect. And so, she is also perfect to us too!

Do They Ever Listen??

2010-03-26T08:20:00.000-07:00

To us parents, do they ever listen? Or even therapists? I'm talking about equipment companies. Do they think we have a lack of knowledge of what the heck we're doing?
Don't get me wrong, for the most part they can be great. Afterall they supply us with pieces of equipment that we wouldn't know what we would do without. Providing they get us the right equipment in the first place.
Two weeks ago we recieved our new Hoyer lift. The girl is getting hefty. And as hard as I try, I'm not getting younger. She's now 71 pounds and 4' 11". I'm only 5' 2" so you can see where this is leading. She's a long legged squirmy kid, and I have to tell you it amazes me how she can bend and twist her body into positions that only I could say "ouch" to. lol
So, the equipment company brings the Hoyer lift in and promptly tells us that for liability reasons cannot pick her up and place her in it. I fully understand that. So hubby and I ask the guy who delivered it, to stay and watch us try it out. Just to make sure we are using it correctly as the way he told us to. So we wheel it into her bedroom and hubby puts the snookum's in her bed. Where she gives us that "look." "No sweetie," I said, "don't worry it ain't bedtime."
We get the sling seat, which looks like it could fit a 500 pound man instead of a skinny little kid, beneath her, cross the front straps and hook it up to the lift. Just as the delivery guy told us to. And by the way, also the way it says in the directions. Hubby starts to pump the lift up and she starts to come off the matteress. Only to have her very little tushie come swooshing out the hole in the bottom. I understand that the hole serves a purpose. For those who can actually use the tiolet. But even with a kid who still wears bulky diapers, her tush clearly came out and through the hole. Something tells me this isn't going to work.
"Oh no,"said the delivery guy, "looks like she needs a small." Small? Looks like she needs an extra small. So two days later we get a shipment and it is the small sling seat. We promptly take it out of the box and try it out again. Only to find that it does the same exact thing that the so called "medium" sling seat did. So I call the equipment company. Tell them the issue and what do I get? An attitude that apparently thinks that we are doing it all wrong!! Of course! We're parents. What do WE know?!
"You need to be professionally trained on the lift!!,"she replied, "so we'll send you out an instructional video." Huh? What? A video constitutes being professionally trained?
After receiving said video, and watching it, only to find that it informed us of exactly what we already knew, I threw in the towel. On our next visit to see our therapist, we brought the small sling seat for them to try it out. And amazingly enough, she agreed with us that the seat was not going to work! No matter how much "professional training" anyone got. It just wasn't going to work.
The end result, the therapist called the equipment company and supposedly a new seat is being ordered. Hopefully it will get here today!!

Going Comando in the Sugar Department...

2010-03-07T07:52:00.000-08:00

Well, you probably have figured that I don't post as often as I should. But I guess that comes with the territory of being a mother of a special needs child. There is often not enough breaks in the day to allow me to do everything. So I must take those in priority and do those first, and work my way down the line from there.
With that said, let me update you on our current experience. My sweet baby girl just came home yesterday from the hospital after an overnight stay at the hospital. A place to which is not foreign to us at all.
We had to be in by 10:30 so that she could be prepped for day surgery. Which was for her dentist to do x-ray's, cleaning and any dental work that she needed done. And we expected it to be alot since her teeth where in such bad shape.
Eosinophilic Espogitus creates alot of food allergies. Which in turn, food allergies can cause other problems. Since my baby girl has food allergies to soybean, peanuts, eggs, wheat, whey, casien, orange and tomatoe there is not a whole lot of things she can eat. Most of her diet is carbs and the ones that seem to produce alot of sugar. A lot of sugar, for anyone, is not a good thing. Im also learning this in my own diet needs as well. Ah, yes sugar is delightful but in the same sense its a sweet evil.
Peptamin Junior, the formula to which baby girl needs unfortunatly has a lot of sugar content. So basically we are in a Catch 22 situation here.
Please note that Eosinophilic Espogitus is not part of Phelan-McDermid Syndrome. In fact, EE is a completely seperate syndrome in itself. So if you have a child with PMS, they don't also have EE.
Anyway, Baby Girl just got home yesterday after a overnight stay for dental work. The end result to which was four front teeth being removed. Adult teeth at that. And eight caps. We were not happy about it. But it needed to be done.
So, our ultimate goal now in our household is to go commando in the sugar department. I know, its sweet and tasty, and who doesn't love sugar? But overall sugar I'm realizing is an evil thing. Sugar in a small amount of it is okay. But WOW, look at all those ingredients labels and see how much sugar is in stuff and it makes one head spin!!
The problem for us, is that the sugar along with some of her seizure and steriod meds have done a number on her teeth. Poor child. Even brushing alone didn't seem to prevent it. So what does one do? Eliminate the sugar in the diet as it can wreak havoc on one's teeth. Overall, you will be happy and your dentist will be happy.
Hopefully I can post more on this subject!

Where Has the Time Gone?

2010-01-18T10:18:00.000-08:00

Well, I haven't been very good about posting. With all things considered, I can understand why. We've had a very hetic last month or two. One with an unexpected trip back up to Boston for a family death. And my sweet little doodlebug and I have been going back and forth with sickness. The most recent one being a week before Christmas she spiked a fever of 103. Fevers make us nervous here. Since she suffers seizures, fevers tend to bring them out.
After the high fevers subdued after about three days, she began coughing and getting all congested. So Christmas Day although she was doing much better than the week before, was feeling better enough to open up some of her presents.
Back to school after three weeks out. Yes, they get two weeks Christmas break, and she only had one day of school. Which she never made it because we now were experiencing unusually frigid temps. And I didn't want to bring her out in such weather after just being sick. Then the rest of the week was set for doctors appointments. Only to have that following friday and monday school cancelled because of the ice and snow.
So, now it is here half way through January, and I think she's only gone to school four days now? Not sure. And the other night she began with a low grade fever and dry heaves. Fortunatly the fever has subdued. But her crankiness is up there.
I suppose I should get back to getting things done.

Christmas Tidings......

2010-01-03T08:58:00.000-08:00

Well, another Christmas has come and gone. And like most of them, it was an enjoyable one! Despite my sweet baby girl as well as myself being sick.
A week before Christmas break, she started in with a horrible cough and stuffed up. Since she does not have the ability to blow her own nose. We have to help her with the aide of a suction machine. Which honestly is a great help!! She doesn't like it of course! But it does help bring her relief when she is quite congested. We were able to obtain the suction machine after a scary bout of four different ailements all at once. Which put her into the hospital for a good five days. An upper respiratory infection, sinusitus, Strep throat, and a UTI.
After a week and a half of constant coughing and feeling punky for the both of us, some relief did come. Thank goodness!! We had to cancel our appointment with the orthotist for her casting because she was so miserable with being sick. And the amount of things that had to be done for Christmas wasn't going to get done as long as we were feeling icky. And the idea of my baby girl feeling horrible on Christmas day was a sad thought!!
Anyway, Christmas for us is a fun holiday. One of our traditions is to drive down to the tree farm just a few miles down the road. Where one can pick out fresh White Pine's and have it cut right there and then. Believe me, the tree lasts for almost forever! Last year we took the tree down the beginning of February. No kidding!
My dad asked if getting a tree was really worth it. "Does she get anything out of it," he asked. I promptly said YES! One of her favorite things to do is play "Christmas present." Where she scoots herself under the tree and looks up and babbles. Often she extends her hands out and likes to grab the pine boughs and then some. And as always, she will at some point pull half the lights and icicle garland off the tree. Sometimes she'll get an ornament and hold it in her hand and study it. It's not a matter will she do this, but when she'll do this and how often. One afternoon last week I must of "reassembled" the lower half of the tree at least fifteen times. But it brings me and her dad great joy to see her interact with her world and do normal kid stuff. So we let her do it so long as she doesn't hurt herself.
Now, for a child who is developmentally delayed she doesn't really play with the kind of toys most 11 yr olds would want. At this age, normally she would probably be into Barbie's or something. But making out her list for Santa can be a bit of a challenge at her age. What do we do get her?
Well, one thing for sure is more DVD's. Since her Autism she loves watching videos. The problem there is she can sit and watch them all day long, over and over, and even backwards. And there is only so many that a parent can watch that many times without going goonie. Fortunatly, her most favorite is VeggieTales. And VeggieTales has a cornicopia of wonderful stories. As well as puns and jokes that even grown ups can laugh at!! So Santa this year brought her a pile of VeggieTales that she did not even have yet.
The other things Santa brought this year was a four sets of nice knee high stockings! Sometimes they can be hard to come across. But they are the best for AFO's (leg orthotics) and if you can get the one's without any seams, even better. I highly recommend all cotton as well, as the AFO's tend to get warm. Really warm in summer, and the cotton socks help asorb the moisture. Since most AFO's are made with a heavy plastic. Keeping the feet and legs dry are less likely to cause problems like Athlete's Feet. And other icky fungi to grow.
As for toys, that is where we often hit a road block. Since she doesn't have fine motor skills in her hands holding small objects can be a problem. So getting her toys like Barbie's and things that have small components is not going to work for her. Furthermore, she doens't really understand that kind of "play."
So, she will end up getting toys that are still in the nursery or preschool stage. Or lots of stuffed animals, soft dolls etc etc. We also get her a toy that is battery operated. Like Elmo, or this year we got her LuLu the FurReal cat. One that can be adapted to a jellybean switch for her to easily operate herself.

Making Wishes Come True...................

2009-10-23T09:13:00.000-07:00

Some people don't believe in fairy godmothers and all. But after our trip to Disney World, I can tell you I BELIEVE!
Some months back we were contacted by an amazing organization called Dream Connection (www.dreamconnection.org). Since my baby girl has two rare disorders, that make her medically fragile and a failure to thrive, she in fact was chosen to be a Wish child.
During the first week of October a spectacular, wonderful and magical event took place for us. The opportunity to go to Disney World in Orlando, FL. I never thought that we would ever see the Magic Kingdom, and experience what many had told us was an amazing trip. Afterall, most who have gone will tell you how expensive it is. And since raising a child with so many needs, finding the extra cash to store away to pay for such a trip was just not in reach. Not to mention how involved it is planning a trip like that to make it exciting for them as well as you. A child with complex needs do not travel the same way as other children. There is so much more to consider when planning a trip with a handicapped child, and with a list of medications and food allergies to consider.
So Dream Connection had it all arranged for us to go six days and to stay at a resort in Kissimee called Give Kids the World Village (www.gktw.com). A special resort just for Wish children and thier families. Never in the world did I ever imagine such a wonderful place as the Village!!
We arrived on a saturday night and were greeted by friendly staff. Who also had waiting for my girl, a Mickey Mouse doll. We were exhausted, but at the same time excited in anticipation of the forthcoming week. The young man who greeted us, checked us in and promptly brought us to our villa. The entire Village was built with small villa's throughout and it had a feel of living in a fantasy land. The villa itself was a two bedroom two bath handicapped accesible home. I say home, because it had a full kitchen and laundry in it, and it felt like a home to us. Rather than a hotel room.
The next day we decided to stay in the resort and check out what was there. Since we all were all well worn out from the drive down. It was a twelve hour drive from Tennessee. We had decided not to fly since Baby Girl has seizures, we didn't know how she would handle the flight.
The Village was beautiful!! With a small train depot with a train for the families to ride. Along with miniature golf, arcade, a large model train village, and remote controlled boats. There was also the handicapped accessible playground as well. Which we ventured over to, and it was the first time in our daughter's life that she was able to play on a playground that she could easily play on. Swings that she could sit in without fear of her falling out. A jungle gym with a large wheelchair ramp so that she could access the top of the jungle gym. It was a joy seeing her enjoy something that most parents take for granted. Being able to see thier children play on a playground.

Special Olympics....

2009-09-17T16:45:00.000-07:00

Yesterday was the bowling competition for Special Olympics. My daughter has been an athlete now for three years. It has been amazing to say the least, to see her do things that otherwise she and others like her wouldn't be able to.
She also competes in track and field, but I have to say she really loves the bowling!! Yesterday marked her fourth bowling competition, since its only held once a year.
Like all the events, the pair up athletes according to their abilities and score ranges. But always limited six athletes to each game as they give out six awards. This is so that no athlete goes home empty handed.
Now, I have to admit that I do get a bit competitive myself. I don't know if this comes from years of showing horses or what. But the anticipation of the game excites me, and I can't help but get all excited when I see my daughter taking the lead.
Since she's in a wheelchair, she has to use a special ramp that holds the bowling ball for her. She also lacks the strength to be able to hold the ball as well. And the other athletes, although some were non-wheelchair also lacked the strength to be able to hold the ball either.
So, yesterday we get in and register, and her teacher comes over and hands us her number. Which we pinned to the front of her headrest. She's a chewer, and otherwise would have done a number on it. She's in lane 17. Which is the house number of the house I grew up in, and so 17 is a bit of a lucky number for me. There are four other kids beside her. There was six, but one got scratched from the competition due to not showing up.
After the opening ceremony of a short speech of the lady who organizes the local Special Olympics, a round of cheer and applause. Not to mention the reciting of the Special Olympics motto. The games began.
They were to play one game. In the past it was two, but now they have moved it to one since most often the kids can't make it through a second game. My girl was third in the turns and by the second frame she was already in the lead. But not by far. As each kid bowled after her until her next turn, I'd find myself almost chomping at the bit. One of the other kids we knew, and are friends with her parents. And although we cheered the other kids on when they bowled, honestly I hoped that they wouldn't score as well. To help keep my baby girl's score on top. I know some may think that's terrible, but hey what parent wouldn't want their own kid to win?
Another frame came, and it was my girl's turn again. Hubby wheeled her up to the ramp, where I placed the 16 pounder ball in hot pink on the ramp. I didn't even know they made bowling balls in hot pink? Hmmm........
She cranked a moment or two, because for the most parent the whole ordeal was overstimulating for her. But as soon as she was wheeled up to the ramp and the ball placed in front of her, she perked up, and gave one of her cute crooked smiles. As if to say, "yeah baby I'm bowling!"
She'd stick her delicate little hand out, and ever so gently push on it. As if the ball were fragile and she did not want to harm it. But it would proceed to roll forward slowly, as if it were in slow motion until finally it hit the edge of the ramp and rolled down the curved slope of it. We would wait and watch the ball make its way down the lane and hoped for that it didn't vear off to either side into the gutter.
Sometimes she got a half the pins down, most times it was nine's, and even a few gutter balls. Although minimal. It wasn't until near the last frame when she was the top score of 99, and the little girl in second bowled a 96. It was close. But finally the last frame came, and our girl bowled a strike on the first ball!! WOO HOO!! And she had another two balls, and after she bowled those she ended up with a score of 118. Which ultimately placed her in first place, and she took a gold medal.

A Thing On Hospital Stays....

2009-08-22T17:15:00.000-07:00

Hospital stays are no stranger to us. Ive lost count for the number of times we've stayed in the hospital. Some just over-nighters, others longer. I think our longest stay was six days. And that was long enough for me.
But one thing is for sure, staying in the hospital is not the most comfortable venture. Your in an unfamiliar surroundings and your not accustomed to thier routine. Thier routine being the nurses and doctors routine. And believe me, their routine is as busy as ever. So, one thing I found being the mother of a veteran patient, is to make yourself useful. No, you don't have to run behind the nurse helping her empty every bedpan. But keep in mind that you or your child is not that nurse's only patient to care for. Although this has happened to us on a few occasions, where my daughter was the only patient for that nurse. And I think in one case, my daughter was the only patient on the floor!! Talk about undivided attention!! It was wonderful! But anyway, for the most part nurses are great and they try to make your stay as comfortable as possible. For they know that the hospital environment is not the choice place for either you or your child wanting to be. But for whatever the reason, you are there!
So, recently we had another hospital stay for a scope and ph probe. A scope is the device they use to view your espohgus and down with a tiny teeny camera. Usually your sedated for this, and since we've gone through this numerous times its no big deal for us. The ph probe is a wire that is inserted into your nose and down your throat and into your stomach. The wire is then attached to a handheld computer device which resembles somewhat of a walkman radio. This measures the acid in your stomach, and when it comes up and how severe.
Anyway, like most times we have to stay overnight, we end up with a double room. Although most often its just us in the double room, so it feels much like having a private room. If you've never had to stay overnight in the hospital, first off count your blessings. Second, dont' expect to get a private room. Afterall, its a hospital and not a hotel.
We settle into the room after surgery. Since you have to be sedated for the scope, its considered surgery. But again, we've been through it so many times it doesn't seem like surgery to us. My sweetie pie was wide awake when they brought her back up to the room. Which is something else I've noticed. Times when she comes back from the scope sleepy, she's pretty much somber the rest of the day. And other times she's comes back wired and she ends up being that way and pulling an all nighter without any sleep. Kids.....
Anyway, we settled into the room when a nurse brought another mom and her two year old son into the room. Apparently they were getting ready to go to surgery themselves. The mother asked the nurse, "is this the room where going to stay in?" "Yes," replied the nurse and left the room. Shortly thereafter the husband walks into the room. And the nurse comes back in. The husband askes the nurse, "is this the room where going to stay in?" "Yes," replied the nurse. To which the wife responded with, "well, we've never stayed in the hospital before and we are not use to this." So the nurse said she would have to speak to the charge nurse and see if its possible they could get them a private room. Sheesh!!
An hour goes by and "they" are moved out, and housekeeping comes in to clean that half of the room. Since technically its been occupied. Lady from housekeeping didn't look thrilled about it. She commented how she just finished cleaning this room earlier in the morning. I told her about the parents "not being use to this", you know sharing a room with someone strange. And she said, they just needed to get over it!! I couldn't have agreed more.
Several hours later, the nurse comes back in with parents who are waiting for their child to return from surgery. And sure enough, first thing out of dad's mouth, "can't we have a private room?!"
Okay, now Im wondering if its us or not. Does the sight of a wheelchair and a bed covered in seizure padding scare the crap out of parents or what? In any rate, I wish I could have said to them, exactly what the lady in housekeeping said, "they need to get over it!"
The nurse by the way, told them that the floor was getting full and couldn't spare a private room.

Keeping a Watchful Eye........................

2009-08-12T13:48:00.000-07:00

Raising a special needs child can be daunting at times. Not to mention overwhelming. But on top of things already needed to be taken care of, the parent of a special needs child also needs to keep a watchful eye on the world around them. For instance, yesterday at school.
I had gone in early to pick my girl up as a severe thunderstorm was rolling in. The sky began to darken, wind picked up, and as of late our area of the south has been hit with torential downpours and flooding. So I wanted to get her from school and home. Since with the winds its not unusual to get tornado watches and warnings.
I got into the school and headed down to her classroom. Upon arrival I discoverd the room in darkness, and quiet. Majority of the children, which are nine in the room, were taking naps on cots on the floor. One aide was in the rocking chair quietly rocking one of the smaller children to sleep. I asked her where baby girl was and she responded "in there." And pointing to the door leading to the storage room which contains the washer and dryer and is also access to the bathroom. I thought perhaps someone had her in there changing her diaper. Only to discover upon opening the door, my daughter in her wheelchair in the corner facing the shelves of stuff. In the dark, alone.
I asked the aide why she was in there. Her response was that the other children were trying to nap, and she was cranking. As of late, she's been very fussy. We don't know if its gi issues, hormonal since she's hit puberty or just behavior. But needless to say, I was pissed to find my child put into a small area, in darkness and worse alone!!
I stewed over it all night long. I didn't say a word to the teacher for fear of blowing my top off at her. Perhaps I should. But it would have been ugly needless to say. But I suppose for the best, I did the right thing by letting it sit and allowing myself to calm down emotionally and re-evaluate the situation so that I could speak to the teacher calmly about it.
So, today after our visit to the hospital for her upper gi and the small bowel follow through, we got home and I made a call to the teacher. I told her that I wasn't happy with what transpired, and didn't want it to happen. I told her as well, it would have only been a matter of taking her outside the room and bringing her for a walk. That would have made her happy and thus the fussying would have stopped. Putting her in a seculded room alone in the dark was not the answer.
She's had this teacher four years. Overall she's a good teacher. I like her. I know it was done without malice or intent, but obviously very very poor judgement was used.
Keep a watchful eye. I know I will be more so now than I ever was.

Our Northern Adventure...................

2009-07-23T08:39:00.000-07:00

Last week we returned home after spending ten days traveling up north to Boston. The place we orginated from. We still have family and friends up there, and since it had been four years since moving down South. We felt it was time to make the journey.
It was great seeing everyone, or almost everyone. But I have to say that traveling with a child like my daughter sometimes can be a bit daunting.
Since the trip is about one thousand miles, just one way. It was not feasible for us to do a straight drive through. In all I think its about a nineteen hour drive. Too long of a time for her to be confined to her car seat. Given the fact that she is still in diapers. So we broke the trip into two days, with an overnight stay in Hagerstown, MD. We also made stops in route, for bathroom breaks, snacks, and of course lunch.
We had packed a cooler full of things for Baby Girl. Since she has the severe food allergies, getting her something in route is nearly difficult to do. So we had her yogurts, juice, and special formula packed in the cooler with ice. We did find out that McDonald's milkshakes, are fine for her. And so we were able to treat her to those.
The other thing we have to contend with is entertaining her. And since she's on the Autism spectrum, seeing her videos is what she loves. Even if its the same one over and over and over. Since we have a full size conversion van, which is equipped with its on video system and tv, this works out very well. However,all of her VeggieTales come on DVD only. So we obtained a case that straps on the back of the drivers seat to hold the portable DVD player, and were able to plug it into a Power Point. WOO HOO! To the person who invented portable DVD players, THANK YOU!
The other thing we packed was a queen size air bed. Since Baby Girl needs to sleep in a bed where she wont fall out. Our plan was to inflate the air bed, place it against the wall and have her sleep in the side closest to the wall. And I on the other side.
We left on a sunny and hot tuesday morning, and arrived on a chilly and dark wednesday night. Yes, up in Boston it was about 50 degrees at night. I couldn't believe it! Summer and it was 50 degrees. My blood has definitly thinned out!
We had a total of six days stay and in that time had many people to visit. On friday we went to Gloucester to visit friends there.And as soon as we got downtown, near the water we opened windows. I wanted to smell that salt air, and listen to the cawing of seagulls. Gosh it brought back so many memories. It seemed much busier and conjested than when we lived there though. Although Im sure it was just that way as well when we lived there, but I was so more accustomed to it.
On saturday we went to Nantasket Beach, and visited family there. It was good getting back to the place I grew up. And that too, had changed somewhat from what I remember. On sunday we made rounds in and around the South Shore visiting.Twice we traveled through Boston, and I have to admit that I don't know how I handled driving through Boston so many times when we lived there. Unfortunatly, Massachusetts drivers are still as crazy as they were. And don't get me started on those tolls!! Monday we stayed back up the North Shore where we were staying with my in laws. It was good to see them, and I know they enjoyed seeing us too. Tuesday we made the trip out to western Massachusetts, to visit hubby's cousin Tony. We hadn't seen them in a good six years and it was great seeing them as well. We stayed overnight there, and on wednesday morning we left for our trip back home.
That day was perhaps one of the longest, because for whatever reason, Baby Girl decided she was going to be in one of her grumpy moods. She moaned and groaned for six hours. Yes, six hours of her whining in an inclosed vehicle was enough to make one goonie. I passed the time by looking out the window and looking for critters along the highway. Hoping that when we arrived back in Hagerstown, MD for another over night stay, she would be happy. Afterall, it was a long drive and I think that for a child who is on the Autism spectrum. Such a drive is difficult for them to bear with.
Once we arrived, we all settled into the room. With no desire to leave it until the next morning. So we ordered out for pizza, and spent the evening relaxing and watching tv. Baby Girl got a nice relaxing bubble bath, and she enjoyed in immensly. To which she fell asleep sooner than later.
The next morning, thursday we packed our stuff up and loaded the van. Since we were so close to Antietam Battlefield in Sharpsburg, we decided to make the journey over there and play tourist for awhile. We are big into States War history (ya'll yankess call it Civil War) and toured a portion of the Battlefield. It was a beautiful day, but extremely hot. Which I noti ced as soon as we crossed the Mason-Dixon line, the weather improved when we got South.
We arrived home at 9:30 at night. Quite tired. But we did enjoy ourselves.

A few things I would recommend when traveling with a handicapped child:
Portable DVD player
Pack extra clothes
Make sure all medications are filled and you have enough for your trip
Pack some of thier favorite toys
Check ahead with a hotel for the accomodations. We usually get a room with a king size bed, and baby girl sleeps in the middle.

Where Has Summer Gone?

2009-06-24T11:17:00.000-07:00

Im still getting use to the idea of kids getting out of school in May, and going back the first week of August. After spending thirty some years North, it was always the end of June they got out and back the first week of September. So, here I am seeing most family whose still occupy Northernland, talking about school being finally out. And we here down South have already been on vacation a month.
So, this morning we brought Stephanie to speech and physical therapy. Which is at her school. Because of the pediatric rehab center being overwhelmed with patients this summer, we had to make fast pace on getting her into the school program for pt over summer. I believe I already discussed this in a past post.
Anyway, today was the last day for physical therapy until school starts the first week of August. So my goal for today was to call the rehab center and see if there was yet an opening for an evaluation for Stephanie. Since she is on the waiting list.
Shortly after we got home, sure enough its the rehab center to make an appointment for us. Perfect!! We figured out a few dates that we could do pt and ot evaluation on the same day at the same day. But no good. So we decided that since physical therapy is more important at this point than the occupational, to stick with an appointment for pt. We got one this friday. Perhaps by the time they actually get her in for physical therapy school will have already started.

The Birth of Stephanie.....

2009-06-22T14:01:00.000-07:00

There is only one time that I told the story of Stephanie's birth, and that was in my book Stephanie's Story: Love Knows No Handicaps. Which can be ordered through my publisher, Publish America. So, recently my sweet Couz, who happens to be a labor and delivery nurse asked me to post about my birth. So here goes....

I wonder if parents think that birthing a child with a disability somehow the mother may have encountered anything different from what most "normal" pregnancies encounter. In some way, yes, the pregnancy is a bit different. For me however, there was nothing much different. Or at least that I could tell. Stephanie was and is my only child, so I had no other pregnancies to compare her to. But one thing I did notice was that I did not experience alot of movement. There were only a few occasions that I actually could feel her move. And once I could actually say I saw her foot stretch out and move across my belly!

I was twelve days overdue, and at that point quite large in the belly. I even had a people ask me if I wasn't carrying twins. To which I reassured them that I wasn't. I was also convinced at twelve days overdue, that I was going to give birth to a toddler!

Several days before delivery, my doctor said that they were going to give me a medication that was suppose to help dilate me and go into labor. And if I didn't go on my own, that they would induce me. It was at this point they had figured out that the baby was going to be around somewhere of eight pounds. Eight pounds! Oh my! But on the eleventh day I joyfully went to the hospital for a scheduled visit for the medication. Which my midwife called it the "magic gel." Apparently it had worked wonders for many other expectant mothers. I don't know. But this is what she told me.
I remember it was about five in the evening, and as my dear hubby sat beside me and held my hand, the midwife administered the gel and told me of the "plan." I say "plan" because it really never does go according to the "plan" nor schedule of events. Then sent me home, and told me to get a good nights sleep and to come back in the morning. For I was scheduled to be induced.
We got home and we sat for awhile trying to relax. But within several hours I had severe contractions. I can't quite remember how far apart they were, but I remember calling the doctor's office and them telling me to take a warm bath. Which I did, but I don't ever recall it soothing away the pain. So finally at eleven o'clock my dearest hubby called the doctors office, and informed them that the contractions were consistent and frequent as every five minutes.
Needless to say, we were back at the hospital just before midnight. I waddled in through the emergency rooms door with hubby as calm as a cucumber. Which really isn't anything unusual anyway. He's pretty much calm by nature.
It wasn't long before they had me in a birthing room and giving me morphine. Why? I don't know why, except that they said they wanted to make sure I got some sleep because by morning they were going to induce labor.
By eight a.m. I was awaken, and the midwife was already there. They broke my water, and I felt that within a short period of time our baby girl would have arrived. Boy, was I wrong!! By four in the afternoon I was still in labor and no baby. And I felt like I couldn't bear it anymore. That's when they brought in the doctor for the epidural. At first I didn't want one. I thought I could tough it out and do it. But I wimped out and agreed to it. Honestly, it gave me a whole new perspective of the birthing thing after the epidural kicked in!
An hour later I only had dilated about two centimeters, and the staff had reassured hubby that it would still be awhile before I delivered. So he went home for awhile to check on things there, feed the cat, get fresh clothes, snacks, and check the mail. By the time he got back at seven, I was up to 7 centimeters dilated. At this point they started having me push. And I feel like I was pushing forever!!
Finally, by 9:30 pm I still had not delivered. I was the first expectant mother in Labor and Delivery that morning and still the only mother not to deliver. The doctor and midwife at that point brought me to an operating room, and said that they would probably have to do an emergency C-section. I didn't really want to go that route, but if it needed to be, then so be it.
At this point in time, the epidural also had worn off. And just after they got me into the operating room, Stephanie decided to come out. Head and feet at the same time!! The doctor now had to push her feet back in. Then preceded to use forceps to deliver her.
Stephanie was born at 9:59 at night, weighing in at 7 pounds 15 ounces, and 20 inches long. At that point, I was too excited to sleep even though I was exhausted. Our sweet daughter had finally arrived!!

Taking Strides.............

2009-06-13T14:28:00.000-07:00

Well, summer is now in session for us. Which means no school for Baby Girl, but intense medical based therapies. Except this year unfortunatly its not going to happen.
Every year before school gets out, I've scheduled a evaluation with a pediatric rehab clinic. The place is awesome and the therapist Baby Girl usually has is Tom. Tom is a great therapist, and although Baby Girl usually grunts when she him, she knows he's going to make her work. It's worth it. Every year she progress' and its his dedication that helps her move forward. Especially with her walking.
Needless to say, cutbacks have effected us all. But for us it has come down to Baby Girl losing therapy. Not because insurance won't pay for it, but because the number of clinics accepting Medicade patients seem to be dwindling. Clinics that still accept, are now getting overloaded with patients and can't keep up with the demand. How sad is that!! So this year when we called, they had to start a waiting list. Currently Baby Girl will not get an evaluation and therapy until July.
A whole month with no physical therapy?! No way!! It can't be done.
So this year we signed her up for summer school. Normally medical based she gets therapy twice a week. Since school is paying for it, only once. So we opted for that route, since one day a week is better than nothing.
The other thing is that she is now missing out on pool therapy. An activity not only she benefits from, but she enjoys!
So, for the month of June we are doing school based physical therapy, and still have speech twice a week. We are now getting her into her Rifton gait trainer as much as possible and getting her into our own pool here at home as much as possible as well.

My Rant of Bubble Blowers....................

2009-06-05T17:54:00.000-07:00

So, Baby Girl has several bubble blowers that she has acquired over the years. She got one some years back from one of her teachers, that actually was pretty cool. It was made by Fisher Price and had a pull down handle that caused bubbles to blow up and out the top of it. Honestly, it worked fine at first but over time it the bubbles got less and less. I don't think it was one she really played with as much. But when she did, it was rather nice bubble blower for a child who did not have a lot of control of thier hands. So it was rather nice.
We've had it stored on the shelf, since winter time doesn't really permit bubble blower usage. Now that's summer is just about here, I decided to pull it out along with her hand held bubble blower. It's one that you dip in a saucer of bubble soap, press the button, and a whirl of bubbles start blowing. It works really well, but again, for a child who doesn't have alot of hand control it was difficult. But it was one we kept anyway.
Yesterday was a good 90 degrees here in the South, and I took the bubble blower and poured some bubble soap in it. In hopes that Baby Girl would once again get the feel for it and be able to make her own bubbles. Since this blower she didn't really need assistance with. Apparently it finally decided its time was near its end, because we got a pitaful shot of bubbles and then it quit. Bubble soap began seeping out the bottom of the unit, making a mess indeed!! Being the frugale type, I opened it up to see what was wrong. Secondly, I needed to see if I could fix it. Yeah, I fix a door knob, now Im on a quest to fix anything. Well, maybe not anything.
Hmmm, I couldn't find a thing except to find that everything inside it was covered in bubble soap. Including the battery pack. So I decided that taking the batteries out would be a good idea. Which it was, only problem is that the wires going to the battery pack obviously got too soaked with bubble soap and the wires broke off. Well, I guess that was a simple fix. I ended up throwing the thing out.
I had to head out to Walmart to pick up a few things this morning, and one item on my list was a new bubble blower. I was looking for one that could be easily operated by Baby Girl with one hand. Since again, she doesn't have alot of hand control. She actually can grasp very well, but to push a small button and hold something at the same time is difficult. She also doesn't have the ability to blow bubbles since she doens't understand the concept.
I found a cute bubble blower in the shape of a tiger. They also had lions, pups and hippos. Made by Fisher Price I believe. Long story short, it was a piece of crap and it didn't work!! So I ended up going back out to Walmart to return the piece of crap, er I mean defunct bubble blower and try to find another.
What I got was another one called Infiniate Bubbles, same price but this one has a large on and off button on the top. It would only require her to press the button. Even better!! And it blows out a trillion bubbles a minute and continusly until you press the button off. Cool!!

IEP (Individualized Education Plan)....

2009-05-22T10:17:00.000-07:00

Well, Baby Girl had her official last day of school wednesday, May 20th. Im still not used to the idea of the kids getting out so early, and going back so early. This year it will be August 2nd I believe.
On thursday her class did a field trip to a local park for a picnic. Since it didn't make any sense bringing her to school, only for us to meet up with them at the park. We decided to meet them there with Baby Girl. We had a wonderful day. However, I have a feeling that the new school year is going to bring yet another round of "battle" with the school dept.
As usual, every year it seems that we have to request an IEP (Individualized Education Plan). For you parents who are new, this is basically the written format of what your special needs child is going to get from the school. It's a very important document, and LEGAL I may add, and its in your best interest to scour it over with a fine tooth comb and make sure your child is getting everything you want them to. Here is my Do's and Don't's List for IEP's....................

DO attend all of your child's IEP meetings. It's in your best interest and especially in your childs interest.
DO request an IEP if you feel something is not being met
DON'T let the school bully you into thinking they call the shots. They don't. You the PARENT does.
DON'T let the school bully you into thinking you can only have one IEP meeting a year. That is FALSE. In fact, you have the legal right to call an IEP meeting ANYTIME you want. If you want to call one each week, you have that right to do it.
DON'T let the school bully you into thinking that once a decision is made, its done. It's not.
DO educate yourself as much as possible on your and your childs rights. A lovely website to keep in hand: www.wrightslaw.com

Now, last year both my husband and I as well as another parent had to go the route of calling in the Dept. of Education. Our issue was that a Rifton walker was not provided for our children's use in school. Schools are required by federal law to provide adapted equipment for handicapped children in order to empliment thier education plan. I have had few nimwits who thought otherwise, and gave me attitude about it. My insurance paid for my daughter's Rifton that she has for use outside of school. It's not thier responsibility to provide equipment for the school in order to educate my child. It's the same as asking your insurance company to pay for something they will need at school. Granted, its the same piece of equipment, but its in two different contexts.
So, our arguement with school is that they needed to purchase a walker to be used by both students. Our daughter and thier son. Whom are both the same age, height, roughly weight and ability. A piece of equipment that the school would then own, and be able to use for other children that once grew to fit into that size walker. Afterall, why should parents be required to bring in that kind of equipment only to fill the hallways up with much equipment, when they can get by on a few.
To my point, the school went and purchased a Rifton walker for both my child and this other child. During our field trip yesterday, the teacher had asked if they could the trunk support from our Rifton walker. I told her that whatever equipment they needed, the school had to get. Since they are required by federal law to provide adaptive equipment.
Maybe some would think I'm petty. But afterall, we donated two pieces of equipment that Baby Girl outgrew which was valued at around $4000. One being a Rifton walker that was too small for her, value $2500 and it went "missing" two years ago. With still no sign of where it went. And they wonder why I don't want to leave our equipment there?!

Insurance Drives Me Insane!!

2009-05-18T12:31:00.000-07:00

I really don't understand thier savvy. Anything that involves the government, is going to be screwed up. Penny wise and pound foolish. Of course, if they are willing to pay, what? $800 for a tiolet seat obviously they are not thinking logically.
Anyway, my gripe once again is with insurance and what they pay for and what they won't pay for. My other gripe with Medicade is that they constantly change what they will pay for and what they won't pay for, and the fact that they NEVER inform you of these changes. So its very frustrating to go to the pharmacy to pick up a prescription only to be told, "by the way, insurance isn't going to pay for this anymore. So it will be $60." What I do get frequently in the mail, is a booklet and information from them in case myself or anyone else in my family is suffering from mental issues, or any alcohol or drug addiction. They have no problem sending me not only all of that information, but send it in duplicate and in Spanish. First of all, no in our household speaks Spanish nor suffer from drug and alcohol addition, nor mental health issues. So what is with them sending me all this unneccessary paperwork that only gets dumped in the round file?? Logic.
So, today I go and pick up Baby Girl's prescription for Miralax. Prescription strength because since she has alot of GI issues, and low muscle tone, she tends to get backed up. Just go back and read up on my post about Pooh. You'll get the idea.
Anyway, as usual they tell me its over the counter now. Like they said before. And I told them before, "just because its over the counter, doens't make it affordable." Come on people!! If a doctor prescribed you something, doesn't it mean most often its medically necessary?
I end up going to Walmart, and for the same exact thing, yes Miralax is over the counter, its $20. Which leads to my next question. Why does the pharmacy need to charge $40 more than Walmart. Obviously someone is making money here, and it ain't me!! So I buy a small bottle of it to hold us over. Because the problem here is, and this is where the "logic" comes in. If she doesn't take the Miralax within a week that poor child is going to be so backed up that it will probably take a ER visit, an x-ray and probably a few good enemas to clean her out to make sure she doesn't have an obstruction of some sort in her GI tract.
What insurance saved on not covering a medication: $60
What insurance will pay for that ER visit: $3,000
Thier logic: priceless!!

Our Week in View......

2009-05-13T08:59:00.000-07:00

It seems as if things are never ever simple. And this week so far, has been the pits.........
To be honest, for once I wish things could just fall in place easily. But I guess that is the way life goes. It's not simple.
Monday started like most mondays do for people, crappy. It's monday, that's why. I can't even remember half of what transpired it was that crappy, so I guess that's a little blessing in disguise. I do know our pool pump died, and that stressed me out. Because pool pumps don't come cheap, and it meant another thing to put money we don't have into it.
I called the rehab center to book Baby Girl's eval for her medical based physical and occupational therapy and pool therapy for the summer. She's always done medical based therapy and its done her a whirl of good. Apparently clinics are dropping patients with state aid, cause it don't pay much. Afterall its all about making a buck and not about the children. Sad isn't?
They told me there is a good three week waiting list, providing the doctors send orders in first. So my action was to call the doctors office and make sure they sent orders over for therapy pronto. Which they rehab clinic got yesterday. But I had forgot to call them. Since I was busy running errands after dropping Baby Girl off at school. I had to go to the pool store. You know, the pump died. And since it looks like she won't be getting pool therapy until the end of June, I'll be wanting to make sure she gets into the pool here at home. They told us to disconnect the pool pump and bring it in. Fortunatly they fix them, so it may not be as expensive.
Now, this morning we had an early morning appointment with the gastroentrologist and we drove the fourty minutes to Childrens Hospital. Only in turn to find out, that the staff booked the appointment with the wrong specialist. Our GI is off today, and since she's seen Baby Girl for four years now, we don't want to be switching doctors mid way. Afterall, she's been on the dot on everything, and we just love her. So they reschedule us again for tomorrow morning, when OUR doctor will be in. We leave and drive back home.
By the way, hubby went to unplug the pool pump to discover that the outlet tripped. So he reset it and replugged the pump in and WHA-LA!! It's back to working! However, we still got to replace the strainer housing at $60 as that is leaking bad. But at least its not as bad.
So, we get home from our "doctor's visit" and I make a few phone calls. One to the rehab clinic to make sure they got the orders. And sure enough they did. But now they say its going to be close to the end of June before BAby Girl can get PT, OT and pool therapy. School is out next week. So this means she'll be going a whole month with no therapy. Except for what we do at home. Grrrr!! With a child like her, with so many needs, a month off is not good. I'm thinking what's the next step.I called school back, and asked her teacher if she was signed up for summer school's therapies. I knew she was for speech, but not sure for pt and ot. She said she wasn't. But had to call central office to see if she can be added. If she can, at least we can take her to school for that month for therapy, and when the rehab opens a space for her, we can do medical based for the last month of summer break.
After that I call the dentist's office. The new one. So make sure they could take wheelchair children. "Oh no, our mobile unit doesn't accomodate wheelchairs!"
Some make a dentist appointment, and that is that. But for a handicapped child its much more involved. For the longest time we had to search for a dentist that not only would accept state aid, but more importantly a child who is handicapped. You would be amazed at the number of dentists that don't accomodate a handicapped child. We went to one once, whom I told up front of her disability. Brought her into the exam room and then preceeded to ask her to open her mouth. "She doens't understand what you talking about," I said. "Make her open her mouth," he said. "You can't make her do anything. She doesn't understand," I replied.
Needless to say, we left without having anything done, and a bit teed off. I can understand if they don't have any experience working with handicapped children. But for goodness sake, they could have told me that on the phone.
So, Baby Girl missed school today for a visit we ended up not having. Tomorrow she'll miss school for the visit we will have. And friday she'll be out as well for the dentist that we already have seen before and made an appointment with.

An Excerpt on Mothering the Handicapped Child-Chapter One.....

2009-05-11T14:32:00.000-07:00

I don't know if mothers of "neuro typical" children encounter this or not, guilt. But there are times when guilt swoons in and hovers over me. Like this morning. I felt pretty guilty for not only saying this, but feeling this, "that I was going to crack" if I had to listen to anymore of Baby Girl's screaming.
Those of you with autistic children, know that in strange situations, our children will just scream. And scream at the top of thier lungs. And most often they do it in public places.
Yesterday, being Mother's Day, we went out to an amuzement park. It's one we frequent, and so Baby Girl knows the territory and its not unfamiliar ground to her. But for whatever reason be it, she decided it was going to be her day to scream. Almost nonstop. But mainly during lunch when we sat down and tried having lunch. For the first time ever, I actually felt somewhat embarrassed at her screaming in public. Perhaps because she rarely ever does it. For the most part its usually just vocalizing. But yesterday it was just downright screaming!!
I felt somewhat hopeless, as well as frustrated, as well as my husband also feeling the same way. Most often I don't care if people look. I usually can let it roll off me like water off a duck's back. But for the first time it really bothered me, and then I felt guilt. I felt like people where staring, and perhaps thought, that she was just an unruly child. Again, parents of autistic children will know that feeling. Most often they get the unasked for advice from complete strangers who don't know what thier talking about. People you wish you could just dopeslap, and say, "mind your own business!"
I know I shouldn't feel guilty for the way I felt. It is completely naturally for ANY parent to become frustrated. I know too well, that my child being non-verbal has a difficult time conveying her thoughts and feelings to us. But equally, it is frustrating for the parent who doesn't know what thier non-verbal child wants or needs. Sometimes I get the, "but she's doesn't understand" or "its the only way for her to communicate." Well DUH, we know its the only way she can communicate!! But what we need is some input as to WHAT she's trying to communicate. Not tell us she can't.
After we finally managed to finish our meal, and feed her inbetween yelps, we continued through the park. After that she was fine. Still not sure what set her off. But then at suppertime, when we were back home, she had started in again at the dinner table. Needless to say, by then my headache had gotten worse to the point of feeling sick. And I just couldn't stand hearing the screaming again. Still not sure what set her off then either.
This morning, once again, she began screaming. But this time it was during her hairbrushing, which she absolutly hates!! And she continued off and on, until we got her into the van and half way to school. Where she fell asleep. When I picked her up from school this afternoon, they told me that she had fussed off and on throughout the day. They also not sure what she was complaining about. But the ride home was quiet and content. And all afternoon she's appeared to be a happy kid.
I love her with all my heart. But like any parent, we have our moments that just frustrates us. We perhaps have more moments of frustration and stress than any neuro typical parent could ever imagine. And on top of it, we get guilt for feeling that way. When we shouldn't. It doens't make us a bad parent, it just makes us human with feelings and emotions.

Be A Fan..................

2009-04-29T18:09:00.000-07:00

At some point or another, as a parent of a handicapped child. You eventually will come to know Special Olympics. If your not aware of what Special Olympics, or SO is, its a wonderful organization that was started by Eunice Shriver Kennedy sometime in the 1960's.
Most people with disabilities don't have the same opportunities as those who don't have a disability. And that includes being able to participate in varies sports.
As a young adult, I was very actively involved in riding and showing horses. In high school I belonged to 4-H, and soon after began showing my 4-H leaders' retired showjumper. My first year I collected a number of ribbons. The year after that my first championship. And today I still have all those ribbons to remind me of the accomplishments I made in riding. I loved it. I loved riding and being around horses. So, it was only natural for me to want to see my own daughter follow that path as I did. Most girls love horses, and I imagined her being just obsessed as I was over them.
But, having a child with a disability, alot of things you once dreamed of for them, disappears. My baby would never have the opportunity to experience winning her first blue ribbon. Until of course, we discovered Special Olympics.
Now that she is ten years old, she has finished her third year doing SO. Her school participates in two events a year. In October, its bowling and in April, track and field. Her bowling, well, her dad and I know if we bowl against her in practice time, we are definitly going to get beat. She's competed in bowling for three years, and each time winning a gold medal. Track and field she's done wheelchair race, and ping pong toss. With the last two years taking a gold and a silver each time.
As for today, we rose to a sky of blue, a sun peering up over hills and crests. The forecast was for rain. But what do weathermen know?? God knew today was important. It was Special Olympics, and today my baby was going to compete. And at 8 o'clock in this morning, her grandpa and I loaded her onto the van and headed out. Twenty minutes away to a local high school.
Well, her day was a success. Two gold medals she won!! And to think that at one time I thought she would never win her first blue ribbon. No, I guess not. But instead she had won her first gold, and eventually another and another. Now she displays her 7 golds and 2 silvers upon her bedroom wall just as proudly. And her dad and I too, are proud of her!!
And its just not the athletes that win you know. It's every volunteer who spends thier day helping out with different events. Volunteers who help athletes to the stands to accept thier awards.
For more information about Special Olympics please visit: www.specialolympics.org

It's My Space, Get Over It............

2009-04-23T13:06:00.000-07:00

We have a full size van equipped with a wheelchair lift. Child weighs 65 pounds, and so does her wheelchair. Lift extends out four feet, but we need another two to three feet to manuver said child and her wheelchair off the lift when its down. Thus the reason for that yellow striped zone in between handicapped spaces. No, its not a special parking space for the nitwits who think that they are the frosting on the cake of life and who think nothing of parking there. Do it, and I catch you, well lets just say things will get ugly. I've been involved in full fledge arguements with people in the middle of a crowded parking lot and most often I get a cheering party going of others who understand what handicapped parking is for.
Okay, so we arrive at our destination and manage to find a handicapped space. Even though there seems to be forty million of them, most of them are taken and especially the ones designed specifically for wheelchair vans. If you don't have a wheelchair van, DONT PARK THERE! It's just common courtesy. Im a woman of small height, driving a big hoobie van and I know how to manuver it on a dime. If there was a NASCAR for conversion vans, I'd be their Dale Earnhart. Or whatever his name is.
So we get a parking space and now the fun begins, especially if Im alone. The side doors on the van HAVE to be fully open in order for the lift to work. If Im on any kind of slight incline that causes the left door to swing back closed, Im screwed. Just like our driveway, which is gravel, I can tell you I spent a good ten minutes scrounging for objects to prop against the door to hold it open so I could operate the lift and hold onto her wheelchair all at the same time. At some point hubby bought me a bungie cord and I hook on one S hook end to the door and bring it around and hook the other S hook end onto the bumper or back door. Anything that will hold the bungie cord to help keep the door fully open. Then I back her onto the lift and get inside and while I have one hand on her wheelchair, with the other I operate the lift buttons. Bring the lift level with the van floor, wheel her in and then proceed to hook up the four restraints from the floor onto her chair. Then pull the seat belt across her and her chair and click that in. Then operate the lift again to store it up inside the van. Fortunatly we have one of those Braun Vangater II lifts which trifold. So I can easily go back out the side door. Some of the older lift models, when the lift is up it covers the entire door area. In which case you have to crawl pass the person in the wheelchair and climb into the seat. This whole process takes about ten minutes, on a good day. If its pouring rain, again were screwed. Cause now I have to figure out how to hold an umbrella as well. It's moments like that I wish I were an octupus.
I've had moronic people make moronic statements to me about me utilizing the handicapped space. Since I can walk on my own, they think its unnecessary of me to have to park in the HP space. In fact, they have told me I should park in a regular space, and when I need to load my daughter onto the van, put her aside. Yeah, like Im going to leave my child unattended in a parking lot of all places. Then back my van out into the roadway of the parking lot, put the lift down, and load her up. Again, it takes me a good ten minutes to do this load and unload process. So all this time, if I were in fact to do this, I would be blocking traffic and leaving a child unattended in a parking lot so that I could save the HP space for someone who really needs it. "It's my space, get over it," I tell them.

Let's Talk About Pooh...................

2009-04-20T19:15:00.000-07:00

No, not Winnie the Pooh. Although he is a hot topic in our house. But I want to talk about the other pooh, you know number 2, or BM. Your probably wondering why I want to talk about bowel movements, but like Winnie the Pooh, that kind of poo is also a hot topic in our house. And your probably wondering about that too. Why is poo such a hot topic in my house? Well, ever since Steff was born, constipation has been a big issue for her. Many of the children with Phelan-McDermid Syndrome seem to have this issue, and she is no exception. Poor child would get so backed up sometimes we prayed for poo. Like some people pray for rain, we prayed for poo. Alot of it also has to do with her low muscle tone as well as I believe her acid reflux. GERD, which is for Gastro Espophagal Reflux Disorder.
Anyway, she's not your go-everyday kind of kid. But more like every other day, or every two days, sometimes every three days. Sometimes she would even go four days, but at that point she would get a little help from what we called the poo stick. Or suppository as others would call it. Since she is on Miralax which is a prescription laxative, its not often that we have to resort to the poo stick. But sometimes we do. If she's been sick and somewhat dehydrated, we usually have to get the poo stick out. As sometimes getting liquids into her can be a challenge. Especially for a child who still cannot drink from a cup on her own, and has a slew of food allergies. Which we have to monitor what she consumes.
Once she got so backed up that we worried she might have had an impaction. Since even the poo stick we gave her didn't even work. So we packed her up in the van and headed up to the emergency room at the local hospital. You don't want to fool around with an impaction, since it can cause severe issues with the digestive system. Not to mention the fact that it causes great pain and discomfort.
Now, with a child like ours, ER's are almost like a second home. Since children like ours, who are so medically fragile and have so many issues your dealing with, something is always going on. So as it seems.
So this particular time we get to the ER, and they bring us into an exam room. We go through the usual rountine of questions, temperature takings, and blood pressure takings and so on and so on. They ended up x-raying her intestine's to see if there was any poo in there. Which I had no doubt there was! It certainly didn't pack its bags and take a trip out of the country. And sure enough, the x-ray showed areas of clumped and dried poo. "We have to get that out," said the doctor. "Really, " I said sarcastically. He could tell I was a mother who was lacking sleep.
Now, the nurse I really felt bad for because she was really sweet and was given the job of applying the enema. Yes, the poor child was at the point of needing an enema.
The nurse came in, gloves on, and ready to go. What a trooper! I don't know if there is any record time for an enema working, but if there wasn't, there now was. It worked so incredibly fast that the poor nurse didn't have time to get out of the way. Poo came shooting out of that child's butt like a rocket, and landing splat across the whole lower half of that nurse's scrubs. And the floor I made add.
Fortunatly, we've had not had to make many trips to the ER for those kind of visits since we take steps everyday in assuring that she has a poo at least every other day. She takes her Miralax, a bowl of oatmeal every morning, and the occasional things of pureed prunes helps as well.
Although we have the poo situation pretty much undercontrol, my dad on the other hand has to make it his daily constitution to ask about her daily constitution. "Did she go today?" "What size of poo did she have?" "What is soft or hard?" I can understand his inquiring but on a daily basis, sometimes it gets well, too much.
Yes, when she has not gone on her own for several days and needs assistance, we worry. But then when she goes, its a major event.

Eosinophilic Esophagitis...................

2009-04-17T14:32:00.000-07:00

http://www.apfed.org/ee.htm

The information below is taken from the above listed website.

What is EE? Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults. This increase is thought to reflect an increase in diagnosis as well as a true increase in EE cases. Fortunately, the medical community is responding and new scientific information is emerging to guide management of this disorder, which often persists with ongoing or recurrent symptoms. Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines. People with EE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema. EE affects people of all ages and ethnic backgrounds. Males are more commonly affected than females. In certain families, there may be an inherited (genetic) tendency. In individuals with EE, the eosinophils cause injury to the tissue in the esophagus. EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve.		Eosinophil, Courtesy of Dr. Margaret Collins

Learn more: Eosinophilic Esophagitis.pdf
Eosinophils are not normally present in the esophagus, although they may be found in other areas of the gastrointestinal tract. Diseases other than EE can cause eosinophils in the esophagus including gastroesophageal reflux diseases (GERD), food allergy, and inflammatory bowel disease. A gastroenterologist can diagnose EE based on clinical symptoms, number of eosinophils present, and tissue inflammation Return to Table of Contents What are the Symptoms of EE? Symptoms vary from one individual to the next and may differ depending on age. Vomiting may occur more commonly in young children and difficulty swallowing in older individuals. Common symptoms include: Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach) Dysphagia (difficulty swallowing) Food impactions (food gets stuck in the esophagus) Nausea and Vomiting Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite Abdominal or chest pain Feeding refusal/intolerance or poor appetite Difficulty sleeping		Upper Gastrointestinal Tract

Since both my husband and I are still learning much about this rare disorder, I thought it was best to post the information about EE directly from the website mentioned above. I could not have written it any better.

Another Medication Headache....

2009-04-16T17:25:00.000-07:00

What is it with insurance?? They cause their own red tape half the time.
My daughter is on eight different medications. One being a Protone Pump inhibitor for her GERD and the Eosinophilic Esophagitis Disorder.
At one point in her life, she was on Propulsid, Reglan, Zantac, Prevacid, and Mylanta six times a day. Until she had the fundoplycation surgery. That made a huge difference!! Then our current GI specialist discoverd the slew of severe food allergies, and since we've been trying to keep those under control, things have been much much better!!

Anyway, we had eliminated all of those acid reflux medications except for the Prevacid. That one medication we felt will be the one she'll be on the rest of her life. But it was working and honestly just being down to one medication for her reflux after all those others so frequently, was great!

Two months ago we needed to get a refill on her Prevacid and insurance informed us that they no longer wanted to pay for the Prevacid. Yes, its an expensive drug. To the tune of $250 a month. But it worked. We complained about it since she had been on it for years already. And we all know that phrase, "you don't fix what ain't broke." And when we find a drug that works, we like to stick with it. The insurance wanted us to try a different medication, Nexium. It was a bit stronger, and the doctor recommend it being a worth a try. So we went with it, and she's seemingly okay with it. So we figure, if the insurance is willing to pay for that, we'll stick with it.

Of course, I had to call a refill in on the Nexium and when I went to pick it up at the pharmacy, they informed me insurance wasn't going to pay for it. Something about a prior authorization. I took a deep breath and sighed. They never inform the pharmacy either of these changes and it irritates them just as much as me. So after I got home, I called the GI office and spoke with the nurse. Explained it all to her, and she too took a deep breath and sighed. She's been through all of this before with us and knew the routine.

Today the nurse called back and told us what was going on. Insurance now decides that they want us to try Zantac for two weeks. WHAT?? Do they really think its acceptable to just try a medication out for two weeks, and see what happens? Needless to say, the nurse told them that we had already done the Zantac route, and it doesn't work. This frustrates the hell out of me!!

My daughter has a severe issue with GERD and EE, and they want me to try another medication that has already proven not to work for her.

A Day in the Life......................

2009-03-31T09:45:00.000-07:00

Well, first off I like to say Welcome!! This is my first post in my blog Stephanie's Story. If you come often, and find me not posting as much, well its because Im pretty busy. In fact, sometimes I feel like Im running on fumes!
Anyway, I wanted to start off by telling you about the average day in the life of a mother of a special needs child. A child who is not only multi-handicapped, but medically fragile. I wasn't sure if I even wanted to do this blog. Since I can be private at times. But then I thought the importance of educating the public about my daughter's syndrome, and the challenges that parents of handicapped children face.
My daughter was born in 1998. She is our first and only child. My pregnancy was pretty normal for the most part. Being a first time mother, I of course had no other pregnancies to compare this pregnancy to. So I guess it was pretty normal. Except for the fact, that my daughter decided to be late and not come until 12 days after my due date.
When she was born, she was a pretty normal baby. In fact, she was and still is, quite beautiful!! And Im not saying that because Im her mother, but because its the absolute truth. I've had many people tell me and her dad how much cuter she was than the Gerber baby. Anyway, she was 7 pounds 15 ounces when she was born. The only thing different what that her second and third digits on her toes were webbed. But the doctors said that there was no concern. And so we left it at that. Not realizing that that was the first indication of her particular rare genetic birth defect.
She spent the first six days of her life in the NICU unit. During labor, I had developed a fever, and that left a concern for her having some infection. On top of the fact, that she wasn't feeding well. I personally thought it was all due to the difficult birthing of her. My labor was twenty eight hours long, and she had decided to come out head and feet at the same time. Perhaps she was thinking of becoming a gymnast when she grew up then. I don't know. But basically living in the NICU unit for almost a week wasn't a fun endevor. In fact you can read more about in my book. It was exhausting, and overwhelming. But I had to say the nurses we had were wonderful and did almost anything for you to try to make your stay there as comfortable as possible.
The hardest part was when I was released from the hospital, and although most mothers got to leave with baby in arms, bubbling with joy, we didn't. Both my husband and I left empty handed, and ironically it was a damp rainy day. Perhaps the good Lord felt our sadness as well. Going home to baby things without a baby is a heartbreaking feeling. But at least we knew our baby was still with us. And each morning I got up I couldn't put myself together fast enough, get in the car and drive the half hour to the hospital to cradle my daughter in my arms.
I often had already fed her breakfast by the time daddy arrived from his morning shift of work. And then it was his turn to cuddle and cradle her. It was one of the hardest six days we had. I can't imagine any parent having to endure that for months on end.
Anyway, that was the beginning. And there are many more to share. But at the moment I can tell you them all. Im still a mother, with a daughter who is now ten and even though we've had ups and downs, overall I wouldn't want any other kid. She's awesome!! But she still requires alot of my time. And since I need to be home for her, I've had to find other ways to earn a living to help supplement my husband's income. Fortunatly the good Lord blessed me with talent to paint and draw. So I work as a freelance artist as well as a dolly dressmaker sewing up clothes for American Girl dolls. It's a living, but more importantly it allows me to be here when my daughter needs me.
So please join me. And again, I may not post often due to my schedule. But I will post and try to keep you informed!
Blessings...........