well I don't have kids yet, but i was born in the spectrum of autism and have over come it in the years naturally and through the help of my mom. what you say and do will truely effect your children more then you can imagine. If you ever get angry I ask of you to take a minute or two to calm down...as odd as that sounds i know parents who get angry at their disabled etc children and take it out on them at times.

Well, I'm not sure how I missed this one in my cruising PFF. I guess it never occured to me that you guys might have special kids as well. Some of the stories here have sounded so familiar that its scary. From the fighting the fact that my son was different to the spinning wheels and the potentially fatal food alergies! So, lets start by introducing you to my family. My name is Vince and I am 35 and the proud father of 4 wonderful boys and a beutiful 11 year old girl. Now, my daughter is fairly typical for an 11 year old girl, trying my patience at every turn. Her biggest issue is that she cme form a previous relationship and the fact that her real mom doesn't want to make an effort to see her. She lives 35 minutes away and can't come because her truck broke down. My oldest son is 9 and has ADHD. We are still learning about this and the mood swings are a killer. My recently turned 5 year old son is Autistic, hence the name of my Fiero in progress, the Missing Piece. It took me a long time to accept this fact and a lot of crying to accept it. He did the wheel spinning and rocking. In fact he spun everything he could and still has a facination with the fan in the living room. His verbal communication is still low, but improving. No luck potty training yet, but we are working on it. And when he doesn't want to do something he just lays down and he's a good size kid! His younger brother, 4, has no issues accept a SERIOUS attitude. They are the same age for 4 days! Almost like having twins since Emmett also had Global developmental delays to the tune of about 18 months. The youngest of my four sons seemed to be normal for a long time except for this uncontrolable rash that he kept getting and wouldn't get rid of. After pushing on his dr. we finally got him allergy tested and he turns out to be allergic to almost everything. Litterally. Eggs, wheat, flour, peanuts, nuts in general. milk. The list goes on, but thats what I can remember of the top of my head. A couple of which could cause anaphalactic shock, so we have to carry an Epi=Pen with us at all times, just in case.

I would just like to say, God bless to all of you who have these children, and to those of you that don't that think your lucky, you are, but not as lucky as we are with them. Not one of us who has posted in this thread, and I'm guessing even the ones who have lost children, would have changed what has happened. We have been blessed with special kids.

I would not change anything. Not one of my kids. There are the days where I don't think that I can take anymore, but if I don't, who will? There was a reason that God gave me these children, and a reason He gave them to me how they are. It's not for me to figure out, it's for me to have the faith it takes to get it done. I will post some pics of my special guys here after a bit and I would sure like to see some of everybody elses, too.

Our youngest is doing great now, but he was born with gastroscisis, which is the intestines on the outside of the body. He had his first surgery @ 3 hours, then had 2 more over the course of 9 weeks. He was also on a bradychardia machine for 2 months after he got home. He is now a healthy 10 month old. The doctors tell us the only real lasting effects are he could develop chrones desease and there is a possability that his intestines could twist, but so far everything is good. All children are special and unique, and they all need our love and support. Special needs just means special people with unique gifts in my book.

quote Originally posted by cjgable: My daughter Samantha just turned 20 months old and is about 21 lbs. She has had issues since birth with acid reflux, milk and soy intolerance. She has to have special formula that her body can process and digest. In the midst of the digestional issues, we found out she had neuroblastoma (sp?) cancer near her spine. Since we found out it has been removed. We were lucky and found it early (stage 1) and she has not had to have chemo. She does go in for regular ct's. About 2 months after the removal, she had a special surgery to her stomach that helps to keep her from refluxing acids into her esophagus and lungs. The short word for it is Fundo. She is now fed primarily through a Mic-Key button that is placed in her stomach. We attach a tube to a pump and pump her food in every 3-4 hours, 45 minutes at a time. We have to, to make sure she gets her calories. She can eat regular food, she just doesn't get enough out of it. So far it seems to be helping, but she still has digestional issues. Tomorrow we go back to Plano so the surgeon can do a checkup on her Mic-Key.

Our daughter also had a fundo when she was much younger,she has CP with all the good things that go along with it. Her reflux is pretty severe we can't even use feeding tubes as it is too much food at any one time.
We found it easier to use an Enteral IV setup as she is non ambulatory and in bed or a chair most of the time.
She also uses a Mic-Key,I will warn you to either always keep a spare feeding tube in correct size (ours is 14 french) or a spare Mic-Key button.
We keep a spare tube and always have two Mic-Key kits at any time,one for a spare and one for changing out old for new.
The hole will begin closing up immediately,and after a couple minutes the right size won't always fit back in.

Brittany is 9 now,she started out an adventure.
We knew we had problems at the hospital,and she crashed overnight and had to be put on life support.
The next day she was to be flown to the childrens hospital in Tulsa,but 9/11 happened at the exact same time and she was caught in the initial shutdown of all air traffic.
So they decided to drive her,which was risky.
We made it (after paying over $150 to fill a $30 tank of gas,thanks to nutjobs jacking prices) but after about a week we were told we need to think about keeping her on the machines or off. She got well enough to come off them anyway though.
After a few months we began to notice things wrong,like startled by noises very easily and she cried 24/7 for the first couple years.
We found out she was blind,and really didn't like daddies surprises.
Anyway,since then we've been through multiple surgeries and hospital stays. She has seizures pretty often also,but we keep valium syringes around and they are very manageable most times without a trip to the hospital.
She's awesome though,and has lived wayy past the possible 5 years limit the doctors gave her initially.
Here's a couple news story about us,our daughters brain injury actually came from the doctor's slow response and we won a lawsuit.
http://sequoyahcountytimes....ion-By-Federal-Jury?
http://www.medlaws.com/press1.htm

Our son Benjamen (4) was also born with a slight disability,severe clubfoot and syndactyl complicated by amniotic band syndrome.
Basically he doesn't have any toes,his leg's were bent and his fingers were squished together.
He had his first surgery at 3mos old,and pretty much had surgery on one of his hands or feet every 3 months since. He has one more I think then he'll be done till he's older and they go in to relieve scars due to his growth.
He is awesome though,and smart as hell-not smart like most people bragg their kids are smart,he is like a little genius almost.
He has the mentality and knowledge of about a 9 year old in a compact 4yo body,it's weird sometimes what comes out of his mouth.

My wife and I also have ailments I guess,she has scoliosis and suffers sometimes from back pain due to some rods and pins in her back.
She spent the time between her 13th and 14th birthdays in bed and going through back surgeries.
I am severly Bipolar,which doesn't really sound like a real ailment but I have type I with psychosis at times.
So I'm pretty hard to deal with at times and can be irrational and have memory problems. It screws with me pretty hard,but when i'm manic i'm close to a genius(167IQ) though when i'm down I forget to take a shower,eat,scared of phone contact-it's strange.
If you met me you would never know,I would seem normal or slightly weird. I generally tend to push people away when they come close to figuring it out or being affected by it. As I get older it has gotten to be "rapid-cycling" so much that I can switch back and forth in the same day almost schizophrenic-like.

We might be pretty dysfunctional,but we hold our own without any help from anyone. I have no family worth mentioning really,her family is great but nobody is keen on watching kids that have IV's.
Anyway,that's our story-glad I found this thread. We don't really know anybody with special needs kids,especially not as extreme as our kids.
Here's a couple pics.

[This message has been edited by DefEddie (edited 05-09-2010).]

My son Tyler has binders syndrome It is a genetic disorter that has caused what is calld an atavism within the genetic code. Basically my lil guy is a bit of a caveman in his facial looks he has no bridge or septum of his nose he only has alittle bump of cartalidge under the skin of were his nose should be plus his heart is under developed, his mother and I have to take him to childrens in milwaukee twice a year as they figure out how to fix his face so far they are planning on growing him tissue in the lab and taking bone from his rib and hip to make him a bridge he is a health boy besides that and binders syndrome is extreamly rare less than a handfull of cases world wide have been doccumented since it was discoverd. Next november they start his surgerys he is 4 years old right now but the size of a young 3 year old so they have to wait till he grows alittle more luckly their is a research grant for him to pay for all this. here is a pic of him from the front it is not so prominent but from the side it is clear his nose isnt right behind that cute face is a bunch of missing bone.

quote Originally posted by DefEddie: but nobody is keen on watching kids that have IV's.

Eddie,
If we lived closer, you could bring em over anytime. Beautiful kids, man. You are a lucky daddy.

Jetsnvettes,
Is there anything else associated with that? Developmental delays or anything? You've got a real cutie there to!

We are truly blessed to have the kids that we do, and as I said before, I, for one, wouldn't change anything. I have learned more from them than I'll ever be able to teach.

Vince

[This message has been edited by vrossiter (edited 05-09-2010).]

he is verry smart far as development he is extreamly behind on growth but they think that it is due to his heart also he dosent say much but he is also verry high strung in the past year he has had stiches in his face three times due to being a dare devil, my guess is if he had a nose he would have broken it a few times by now instead he bounces off his lips and forhead. we go for a catscan next month again to map out his skull for the surgery team in milwaukee, his doc is John N Jensen MD assistant professor of the department of plastic surgery and his team of research students at childrens, its a overwhelming visit having a bunch of people in the room to observe.

quote Originally posted by jetsnvettes2000: , its a overwhelming visit having a bunch of people in the room to observe.

I can definately relate to that. We have never had Emmett in for an appt. that there were less than 2 people sitting in on. Usually its more like 5 or 6. We are very lucky to have the doctor that we do for him. Dr. Blake, it is my understanding, is one of the best at working with special needs kids, autistic kids in general. He is one of the only doctors Emmett has been to that he is comfortable with and not looking for the door. That to me means alot. How my son reacts to people tells me alot about them. In fact, i generally trust his judgement better than my own.

Here's my little guy. He likes to run around with as few clothes on as possible all the time!

[This message has been edited by vrossiter (edited 05-10-2010).]

aw lol, ya my little guy is the total oppisite he has to be dressed or he wont do a thing!!

Just ran into a thread in O/T that got me thinking about this one.
.
.
.
And me thinks its time for updates!
How bout anyone new?
Vince

quote Originally posted by vrossiter: Just ran into a thread in O/T that got me thinking about this one. . . . And me thinks its time for updates! How bout anyone new? Vince

Not new, but I can update. Our son has had a few of his evaluations done. We are still waiting on the school to do theirs and then a speech evaluation. As it sits now we are looking at Asperger Syndrome/Borderline Autism with SPD (Sensory Processing Disorder) which regularly accompanies Autism. He's started therapy for the SPD and will be starting occupational therapy in 2 weeks.

This is our little guy, You can see one of the bumps on his head where he bangs his head on the wall.



In the background you can see a bit of our big girl who has Hypothyroidism and Cerebral Palsy.

[This message has been edited by Khw (edited 06-10-2010).]

Emmett's occupational therapist, fancy way for sayin she helps him develop social skills, has said that they are working on doing away with typical classifications of Autism and are trying to go to simply Autism spectrum disorder. More uniform.
I suppose there are to many variations popping up, and more all the time. It seems like this just mutates when they get close to pinning something down.
Makes sense, as those that have it are all on the spectrum somewhere anyway.

Hopefully you school is a little more with it than Emmett's. It took us over 2 years to get them to put an Autism classification in his file. And that was only after 2 of the top Dr.'s in the field in this area gave him the diagnosis. What capped it was the 2nd one was THEIR Dr. They couldn't really give us much more of a hard time after that. We still couldn't get him the resources that the docs said he needed. The school district here is for the birds. It's actually had us considering moving just to be rid of it, but that may be as hard as putting up with it. I don't like moving the kids if we don't have to, and we've had to enough, lately.

Good luck with it Khw, keep at it!

Vince

quote Originally posted by vrossiter: Good luck with it Khw, keep at it! Vince

I can't do anything else. I love my kids to much.

The one thing is... My mind always wanders into thought.

Like I look back at my school papers when I was in grade school Instructions like circle the correct answer and I'm drawing boxes, stars or irregular polygons around them. My teachers always saying things like "Earth to David, come in David" because they thought I wasn't paying attention. When I'd respond they'd ask me to answer the question they just asked. I could, or I'd say something like "Which one, you asked two".

My parents just came out for a visit and my Father was telling me a story from when I was in gradeschool. At one time they had a parent teacher confrence because I was being disruptive in class. The teacher said that he'd like to have my parents permission to try something. Apparantly he had tried it before and with great success. He asked if the next time I was disruptive, if he could have me sit at a desk in a closed closet by myself and do my work in there. The teacher told my parents, he had done this before and never had to do it more then a couple of times before the student stopped being disruptive. So, my parents gave their concent. The teacher scheduled another confrence and told my parents we've got a problem. When my parents asked "What?", the teacher responded "He likes it in there.".

I've always been very analytical and I'd find ways to solve a problem, correctly, that wasn't the way I was taught. Finding questions the teacher asked that didn't give enough information to conclude one correct answer. Like a clear stone placed with a glass slide. The question "Is it glass, quartz or diamond?". I chose quartz and was marked wrong as it was a piece of diamond. I pointed out to the teacher when he handed the test papers back that any stone of a hardness of 7 or higher would scratch glass. Quartz being a hardness of 7 would easily scratch glass just like a diamond. Therefore you left us 2 answers which could be correct and no way to exclude one or the other. Everyone who had chosen quartz got credit for a correct answer after that.

I've always as far back as I can remember, shook my leg repeatidly without even realizing I was doing it.

It just makes me wonder if the way I think is the same way others think. Not what I think but how. Like when I see blue, does my brain process it and conclude it's blue the same way other peoples brains do?

I know my genetics aren't perfect. I had veins growing in my spine where they wern't supposed to be.

I just wonder if maybe it's me that's wrong with my kids. If maybe I had these kinds of problems to, but I learned to become functional with them.

I know it's probably a stupid thing to think, but still my mind wanders.

quote Originally posted by Khw: I can't do anything else. I love my kids to much. I just wonder if maybe it's me that's wrong with my kids. If maybe I had these kinds of problems to, but I learned to become functional with them. I know it's probably a stupid thing to think, but still my mind wanders.

This is as far from stupid as you can get, Dave.

The fact that you may have had some of these same issues as a child, and yet still have become a functional and productive member of sodiety.......
This gives me hope that my kids and everyone's can someday be included into society, and not have THOSE people staring at them like they don't belong in the same places as everybody else.

I bumped this the other day cause I saw a thread in OT. This thread in OT had nothing to do with SN kids, but I had just been in a situation with a person like this earlier.
We loaded up all of our kids on Wednesday to go to Jordan's, that's our oldest sons, little league game. As soon as we got there, Emmett wanted to go 'play' with the big kids, and didnt understand when we wouldn't let him. He just tried getting out there, I wouldn't let him go, and a meltdown ensued. I'm glad that there was only a few people there, that way there was less of them to look at me like I was a bad dad for holding him to my chest and not letting him run away and trying to talk to him. It's people like these people at this game, that I cannot stand, and I have had run-ins with them in the past, and probably will in the future, and have found, that it doesn't matter what I say to them, they still think that I have the worst kid in the world and I am the worst parent because I can't control my son. And yet these people really have NO idea.
Now, I have not been in a fight in a very long time, but every time this happens, it makes me want to 'fight' everyone i see and come into contact with.
One of the best things that we have ever done with Emmett was last year. We went to Sioux Falls and participated in the Autism Walk. It was pure joy to not have to worry about what everyone else thought if Emmett had a bad time, cause they all KNEW! Why can't everbody be as understanding? Patient? Tolerant?
I wish people were different, cause then my son could be the same.
Sorry about the rant, but this still has me very sad and hurt.

But as I said, the fact that you, thinking you may have had issues, and Hockaday from the top of the page, have been able to join society, gives me hope.
Reading this thread gives me hope.
Talking to others who have had my issues gives me hope!
In short, you guys give me hope.
Thanks,
Vince

khw said:
"I've always as far back as I can remember, shook my leg repeatidly without even realizing I was doing it. "

Welcome to normality. I leg shake all the darn time.. no idea why. I think it is an involuntary reaction to waiting for something. It sure LOOKS like I am being impatient when I do it. My sister leg shakes all the time too.. can't be genetic, she was adopted.

khw also said: "It just makes me wonder if the way I think is the same way others think. Not what I think but how. Like when I see blue, does my brain process it and conclude it's blue the same way other peoples brains do?"

I get this all the time. If I hear the word 'frog' is that what was really said? Or did my mind make it into frog and someone else heard 'toad'? Or does my mind filter color differently, and even though I am seeing blue, does everyone else see red? When fogarty sings "There's a bad moon on the rise" I can definitely see where "There's a bathroom on the right" came from.

I grew up being a little different. I believed in Santa Claus until I was 12. (Actually, if you really wanna know, I STILL believe in Santa Claus, but not the same way I used to..) While my classmates began chasing girls, I kept playing with my Transformers. Its a phenom I liken to autopilot. I was not really thinking about much more than what I liked, and my body reacted basically on its own toward what i liked. I "woke up" about 8th grade.. until then, I am pretty sure I was not a 'normal kid'. I was heavy, oversensitive, artistically inclined, and prone to becoming somewhat violent with other kids who would verbally target me or, more often, my family. I grew up with a fat mom.. boy, you end up getting into a lot of fights when your mom is fat and the other kids know it. I sent a kid to the hospital in 6th grade because of what he was saying about her. I actually can't count the fights I had been in growing up, but they were many. Around 8th grade, the kids who thought they could fight would start some crap with me to see how they would fare. The only fight I ever lost was the only one I started, and that kid knew karate!

By 10th grade, nobody messed with me. Not only was I a fairly normal kid by that time, but I also had removed anyone's doubt that if you messed with this bull, you would get the horns.
Once they started leaving me alone, I started concentrating on finally growing up. Now, I am a fairly normal dude. Have not knocked anyone out since 2000. I am married and have an acre and a few dogs. Not really sure if I am ready to bring a child in this world... if anyone wants any reasons, look at the middle east, the gulf of mexico... our world is seriously not getting any friendlier to child rearing, and I am just not sure if I want to bring a life into this world that may not see its full potential because of our current environmental and political conditions. I know the 'consummate parents' out there will be the first to say 'you cant let that stop you.' But I can and I did... financially speaking, there is no way I could afford a child and all that goes with it, anyhow. That is getting harder all the time..

You know, there were no 'special needs' kids when I grew up. We had some kids that were hyper, some kids that were a little slow, some kids that talked funny (like me, I had a speech impediment growing up) some kids looked funny, but we all felt we were all normal old kids. We were all in class together, and nobody made a big deal out of five word conditions or special needs.. Not saying there is anything wrong with knowing your child's condition that makes them different, but why label and shelf them that way for life? My nephew is autistic, and thats exactly how he is seen. I prefer to think of him as a little chubby and immature. Otherwise he is a normal kid and a heck of an art talent, but the rest of the world insists on labeling him , and now he will never be treated normally. He's a heck of a sweet guy, and I believe one day his switch will turn on just like me. I have no idea if I was autistic growing up.. i certainly acted funny.. but I tell you this, I think I finally snapped out of autopilot precisely because a big deal wasn't being made out of any condition I might have had. I was just labeled: Kid, and I was eventually able to just be one.

Of course, there are some conditions that just don't allow for normalcy, and I truly sympathize. I think everyone does. When you see a kid acting up in public, 'bad parenting' is not the first thing that comes to my mind. That comes to mind when the parents dont try to control the situation.. then that is definitely bad parenting. (How do you ignore your child in public just because you want to have agood time too? Never understood how someone's misbehaving child became everyone's problem because their parent can't be bothered to care.) No, when I see a child acting out, I generally wait and see what the parenting situation is before making any judgements based on the behavior. It very well could be autism or some other condition that is making them difficult currently, not parenting. However, those with kids who are acting up should not be surprised when someone looks in their direction, after all, their kid IS making a scene, regardless of why. Of course, if their kid is just being a brat and the parents could care less, then I give dirty stares as good as anyone.

My cousin's child has down's, and she does very well. You can see her get frustrated about something, and two seconds later, its not even an issue.. just smiling and good natured. I wish I could turn it around that fast without stewing over something.

[This message has been edited by tbone42 (edited 06-12-2010).]

Well, today we saw the Behavioral Pediatrition. Our son has now officially been diagnosed with Autism Spectrum Disorder. He will see a Neurological Psycologist in the near future and they will decide where he falls on the spectrum. They ruled out Aspergers Syndrome so it will most likely be High Functioning Autism. The good news is that his social interaction leads the Behavioral Pediatrition to beleive that with therapy he will likely lead a normal life .

[This message has been edited by Khw (edited 06-30-2010).]

quote Originally posted by 85-GT: Now THAT'S an inspiring story. I have a younger brother, Bryan, 15, who has a short list of learning-related disabilities, including some hint of Asperger's. He's a bright kid and can memorize just about anything... that he wants to. He can tell you when just about any major or local city in New Hampshire or Massachusettes was founded, and sometimes by whom. He can tell you the price of paper towels at Hannford versus the price at Wal*Mart and how the latest Filene's-Macy's merger is going; but I'll be darned if he can solve a word problem in math class. It hasn't slowed him up at all, he manages to stay an honor student with only a little help in math along the way. You probably wouldn't want him to balance your check book, but he'd be the best darn museum curator ever. I bring him up because his disabilities put him in a specific class of kids. He sits in the same classroom as eveyrone else at his public middle school (now high school), but can't keep a friend. Everytime he makes a friend, another kid reminds that friend that "Bryan's wierd." Which I suppose is true from a teenage perspective. He doesn't like "Yugioh" or "pokemon" or whatever [forgive me] crap kids are into these days. He'd rather read a book about life int he 1800s or go to a local dollar store than even think about learning how to play a video game. Maybe it's brotherly bias, but a kid that would rather have a Barnes & Noble gift card and a trip to Amish Country instead of an XBox 360 is just fine in my book. His great failing is the Asperger's. He can't read a facial expression to save his life. He's learned to deal with it in his own way. He knows that sometimes he can't tell how someone is feeling, so he just asks; which is much more endearing than it sounds. Instead of avoiding someone who is frustrated about something, he'll ask: "As you angry because your computer doesn't work?" Which immediately begins a stress relieving discussion And in most cases, even if he knows he doesn't have the faintest idea about what you're doing, he'll offer to help, or ask if there's something he can get you. Now put him against the kids in his class calling him wierd, and refusing to be his friend because he doesn't know that Charazard beats Jigglypuff with his fire breath if you have the ord of Infinity card and I'd say Bryan stacks up pretty well. Sure, sometimes I wish I had a "typical brother;" one that wants to play video games, sneak out... a brother that I can make fun of when he brings a girlfriend home... but I definately didn't get the short end of the "brotherly stick." Right now, Bryan is with Dad, some 30 miles away, checking out a new dollar store that just opened. Speaking of Dads, my dad might not be the "hero" of that last article, but I'd say any dad that works late nights and long weeks to take his son to Amish country (a place my dad would probably rather not be) is a hero in his own right. The same goes for the mother who gives up her career to make sure that her son gets that extra dose of attention he needs to grow up just right. I say "nuts" to people who say "I can't imagine living with a brother/son/child that has _______________." Because I wouldn't trade it for anything in the world.

post is older than dirt i know... but thanks for posting it. i often wonder what and how my kids feel about their brother... (5 years old and has autism). i hope and pray they feel like you do...

So glad to see this one is still going strong!

Great stories and experiences - everyone! Sorry I have been away for a while. I'm back in a Fiero for a while. Gotta live the dream of a 3800SC some time.

Keep 'em coming!

Update: My son went to NUAP (Northern Utah Autism Program) today and saw their psychologist. He observed my son and was talking with my wife after. He said that when diagnosing Autism they look for 12 markers (behaviors). He observed at least 6 which places him out of PDD-NOS which is basically high functioning from my understanding and right into Autistic. He will be starting at their school on October 11th. This is really a shock to us as when we called the waiting list was atleast a year and we got a call within a couple of months. So now we've had 2 Doctors diagnose him with ASD and we've been told by the local school psychologist that neither of those 2 just pass out diagnosis's. Were releived, as oddly as that might sound, because now he and us are going to be getting the help we need so we can learn what to do. It's going to be difficult, having only the one car since the Fiero isn't registered yet, but we will manage. I don't care what we have to do, we will make it work.

[This message has been edited by Khw (edited 09-30-2010).]

I midas well give a update on tyler too, we had another meeting and they want to put of surgery again! ugh this is horrible we have discoverd a major problem we forsee in the near future he has no nose and he may need glasses how in the h-ll will he keep them on his face without getting picked on? this is such a headache! and I fear with all the goverment bs going on we will loose the grants ugh kinda tough to even think about it but we make due everyday! Tyler has started to get a real attitude too lately, to the point of having to take him to behavior doc, Ithink he is relizing he is diffrent now being in pre k I hope this is just a phase.

I haven't stumbled upon this thread before but glad I did. Just when you think PFF is all about motors, grease, parts, speed, mods, etc etc then you guys jump out and surprise me once again. Let me tell you what you parents are who have kids with special needs - you are heroes. You may not feel like it but you are. Reading about these parents behind the scenes doing everyday things everyday over and over, doing what needs to be done, not giving up took my breath away tonight. Until my son Tyler got cancer I was always fortunate enough to have healthy kids, no problems. I know I have thought myself more than once that I am so lucky. When something the world calls "abnormal" happens, everyone wants to run and hide or pretend its not happening. Its the elephant in the room. But us parents don't have that luxury. We heard so many times that "God doesn't give you what you can't handle." Well.... God and I are still discussing this issue but I do believe that children who are ill or who have challenges other children don't face are here to help us become better than what we would have without them.

------------------
Nellie - forever Tyler's mommy

Agreed 100% I was pretty wreckless in my younger years until I had kids it changed me for the better, then my tyler came along and it really changed me I have learned alot about things I would have never cared about before its a humbling experience for shure.

Our daughter is now almost 22 years old. Because of her, we have become better people. I'm pretty sure I'm speaking for all of you who have special needs children. We appreciate the smaller things in life. As far as that goes place a much higher value on life itself and understanding what quality time with family really means. Time spent with our children is priceless.

God bless all of you.

quote Originally posted by NY_FIERO: you guys rock. god bless.

Amen!

I, too, somehow missed this. I have 4 children, My 14 year old daughter(step, but shes mine ) and my 5 year old daughter are healthy. I have a new 1 week old son, and my son Payton will be 3 at the end of the month. He has a terrible terminal disease called Hunter Syndrome, or MPS II. This is a very rare disease, called a storage disease. He is missing an enzyme that breaks down a certain sugar waste in our cells. So basically every cell in his body is poisoning itself. His life expectancy is 8-12 years. No parent should ever have to out live their children...

He was born a healthy baby with a huge appetite. At 5 months, we notice one vertebrae sticking out a little more than the others. We we told it was Kyphosis, which is similar to scoliosis, only curved forward. He was to wear a back brace for a few years and be fine. At 14 months he had had a runny nose for 3 months, not normal. My wife took him to our local clinic and the doctor wanted to rule out something. She took an X-ray of his hand and back. Then (as a mom herself) the Doc came back into the room bawling. She told my wife that my son was going to die. I was at work an hour away. It was just a runny nose appointment...

Hunter Syndrome has no cure, and comes in as many severities as there are cases. No two are identical, yet all alike. Mentally my son will be slow, right know he knows a dozen words and a few signs. He will regress in a few years. Physically now he is very big (65lbs), but will stop growing and end up being short for his age. Like most down syndrome kids, most MPS kids all look similar to each other. Large head, wide, flat nose, prominent eye brows, almost no neck, etc. He has enlarged organs and a very high chance of future heart disease. His bones do not grow straight, so he has trouble running, and has more "forehead to pavement" encounters that I'd like to remember. He has had tonsils and adenoids out, as they have airway troubles. He has had more surgeries than anyone I know. He is 70% deaf and has hearing aids.

The best doctor in the WORLD for this rare disease happens to practice at the University of MN hospital, which is 30 min from our house. It is the biggest blessing. People literally come from all over the world to see him. He actually discovered a cure 20 years ago for another MPS disease called Hurlers Syndrome. He install a port in my sons chest, and once a week (for life) he receives a 5 hour I.V. infusion of a new drug that was approved 3 years ago. It is a synthetic enzyme of what Payton is missing, so it slows down the physical damage. Our bodies have a barrier that keeps medicine in our blood out of our brain, so it doesn't help him mentally. Imagine a 2 year old sitting still for 5 hours. It's heart breaking every week. He starts crying hard every time he sees someone in scrubs.

So far our insurance is covering the drug, which is amazing, as it costs about $20,000.00 PER WEEK!!!!!!! but our new health care reform is pushing to call this drug not necessary.

quote Originally posted by Khw: My wife looked at me after the Doctor appointment and said "Can't I give you one normal child?". My reply, "They are normal. They are just the way God wanted them to be, and I wouldn't have them any other way.".

I agree 100% My wife said the same thing about our son. Hunters is a "mother to son" only disease. She immediately blamed herself. I never would think like that. Either my son was a bad egg, or my wife is a carrier, which means my girls could be carriers. We have had lots of testing done to find Payton's DNA mutation, with no luck. Until then, we can't test the girls. It's very frustrating.

Lastly, Back to my one week old son Logan. He was an "Opps" as we wanted to see if my wife was a carrier first before we had our last child. If she is, there is a 50/50 chance of this disease with my new son. I have to believe that whatever happens, it was meant to be. So far he is happy and healthy, and we will get the test results in about 2 months. Either way, I love them all to death.

From a great country song, the line "If you want to hear God laugh, tell him your plan" As those of us who believe, there are no accidents, and he won't give us more than we can handle. But as the famous saying goes, sometimes I wish he wouldn't trust me with so much.

I too have read about how a child's death causes a lot of divorces. So far we are doing great, but we definitely handle it differently. My wife cried herself to sleep for months, and still focuses on how it isn't fair. She has found some help by talking to other mothers online. I cry much less often, and try to concentrate on the accomplishments he makes. But I will be a terrible mess when he is gone. He is Dad's little boy. He LOVES the movie CARS. He watches it multiple times per week! He still gets sooo excited every time it comes on. He sits in the Fiero and makes engine noises. priceless. We have lots of pics, but I need to start making more home movies.

Here are the three, tired, and patiently waiting in the middle of the night for their new brother. Payton's in the middle of his loving sisters.



And their new brother!


Thanks for listening.
Chad

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Intercooled SC3800 II/III mated to a Getrag. 19's with 13" Brakes on all 4 corners. 5 years Avionics & 15 years Car Electronics.

quote Originally posted by MOBILE: He sits in the Fiero and makes engine noises. priceless.

How in the world is that possible ??? It's been sitting on a lift for 5 years !!!!!

quote Originally posted by PURPLE REIGN: How in the world is that possible ??? It's been sitting on a lift for 5 years !!!!!

wow... um, At the Frazee show, and at the shop...

quote Originally posted by MOBILE: wow... um, At the Frazee show, and at the shop...

Ooooohhhh.......twice in 5 years...... your on a roll !!!!!

quote Originally posted by MOBILE: So far our insurance is covering the drug, which is amazing, as it costs about $20,000.00 PER WEEK!!!!!!! but our new health care reform is pushing to call this drug not necessary.

I mentioned this to my wife, she was as disgusted by it as me. If they tell you they will no longer cover it, personally, I would get a lawyer and inform them that I will be contacting every news agency I can find. Amaizing what a little bad press can reverse.

I'd like to say I sympathize with the pain you will feel. I can to a extent but I can't imagine how much greater that pain will be after the 8 to 12 years. We lost our son after 22 hours and that is something I wouldn't wish on anyone.

Keep your head up, be strong for your wife and I pray you can buck the odds. It can be done but neither of you can blame each other. It's in Gods hands.

God Bless.
David

quote Originally posted by Khw: I mentioned this to my wife, she was as disgusted by it as me........................It's in Gods hands. God Bless. David

Thanks David. Years or hours, It doesn't matter, a child is a child. After being around my new son this last week, I don't consider yours 22 hours. More like 9 months, 22 hours. Everyone has there own different beliefs, but I've always been taught that kids like ours in this thread that are special, and your little one that didn't make it, get a free pass to sit upstairs right next to the Lord. It's a long wait, but we'll see them again!

Thanks again

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Intercooled SC3800 II/III mated to a Getrag. 19's with 13" Brakes on all 4 corners. 5 years Avionics & 15 years Car Electronics.

My youngest has Type one Diabetes and is 8 years old. Compared to many other problems some children have this is minor but still deadly. I wish everyone who has to care for their children the best and a Happy enjoyable and comfortable life ahead for their children. It can be heart breaking at times and only those in this situation can fully under stand the sleepless nights and crying spells just like the one I am having now thinking about this. Rick B

This thread has been going for so long, that I thought I would update. My heart goes out to all the families living with the extra load they have to carry. I know it is not easy, if I could take me kids diabetes away I would gladly carry the load for them.

My girls are now 12 and 9, still wearing insulin pumps and a minimum of 6 blood sugar checks a day. A little over a year ago my oldest was diagnosed with Hypothyroidism, common for people with Type 1 to get. She takes a pill everyday, it is not easy, she hates taking it and fights it everyday. This causes a lot of stress on the family. If she does not take it, she will have complications. She dose not like to visit the Dr and this causes every trip to be stressful for us also. I keep praying that she changes her thinking and will take care of herself when she is older.

I try and keep them busy, both are in 4H and into showing and training our dogs. Kimberly ( oldest ) also does photography and won a best in show at a recent 4H show. My sister has horses so if she is doing good she can go ride the horses, if she is having a hard time with her meds, we won't go. It is not easy but I will keep trying and do my best.

Haven't been onsite for quite awhile,been having a rough time the past several months.
Thought I would update on my daughter.

We normally don't know when she outgrows her siezure meds till she has a siezure,lately her siezures have been coming more frequently though.
We keep about 4 10mg syringes of valium at home for them,and generally treat there.
Last week she had one though and we couldn't pull her out of it with valium.
After an ER visit and too much atavan and dilantin she finally pulled out of it.
Spent a night in the hospital and sent home with a new prescription.
She is now on 3 different seizure medications,dilantin,trileptal and something I can't pronounce.
I used to be an EMT,so I know the ramifications of this unfortunately.
I've seen 10mg of valium knock a 200lb woman in a grand mal into a near coma,but the 7.5 we give her barely fazes her anymore.

I've always secretly worried about her feeding,as she was first medicated for it-when that failed she was given surgery.
After surgery she had to go back on medicine,and now she has the surgical,medicine and feeding pump almost continuosly.
She's at the limit of what can be done with her gastro issues also,and barely maintains enough nutrition to live.
Now i'm afraid of her being at the limit of what medication can do for her seizures.
All those medications can be dangerous at certain levels,and she is at high levels and triple threat.
Not sure where we go from here or what to do.
It feels like neither one of us want to talk about what needs to be discussed.
How do you talk about something like that or even bring it up?
I've started to wonder if we are perpetuating her misery,as the good days are less often than the bad anymore.

This past wensday till today we had a big scare with Tyler, he developed pnemonia and due to his heart problem it got pretty bad, he spent last few days in the childrens hospital but today we were able to bring him home, his body for some reason is having trouble regulating its temp and he was getting so hot he was halucinating(<---spelling? dont care at moment) anyway they had three diffrent iv's in him and were giving him a coctail of antibiotics. Turns out that was a bad thing in the begining we found out like me he is alergic to eurithromisin luckly the got it in time and fixed him up so far but we are not totally out of woods yet.

Wow - lots of interesting stories of strong kids and strong families. Great to see.

Little Kale is turning 6 in a couple weeks. He is doing great in school despite the Downs syndrome. He started pre-shool at age 3 instead of the normal 4 so that he could experience it twice. Well, at three, he was teaching the 4-year olds the names of letters and counting to 10 for them. Now he is in kindergarten and his teachers say they have not worked with a kid who comprehends so much before. His speech teacher called yesterday to tell me about him reading out 6-word sentences with the help of photos. She was quite pleased.

I'll post a few pics soon. He's been singing his little butt off, so we caught some good shots of him looking like he is auditioning for American Idol!

Thanks for all the stories, PFFers. Keep them coming. Talking about these things and learning that you are not going at it alone really make a difference.

Also, my wife's Down syndrome support non-profit has a new site. It's still at www.angelsforeverup.org, but it has a new look. Our last fundraiser brought in over $25k to help educate parents before they decide to abort these wonderful children.

Cheers to you all!

Andrew

I, too, have special needs kids. Both of my boys. My oldest son Hayden(11) has aspergers syndrome and my younger boy Hunter (6) is autistic. I have two daughters who are off the charts in the smarts, so you can imagine the chaos at my home daily. My wife is a saint and is home quite a bit alone as my job has me traveling many days a month. It is really hard to find the time, let alone resources to bring my '88 notchback to life. I try to involve my boys as much as possible when I do get the chance to work on my project. It is cold and snowy in Utah these days, but in the spring we'll all be outside pulling parts from my donor car in the sun. Hunter, my autistic boy especially enjoys getting in the passenger compartment and pretending to drive. He is a real challenge, but a true joy. Unfortunately, with both my boys' issues, insurance covers nothing related to their treatment and it seems like someone around here anyways has turned the misfortune of these disorders into a cash cow! Seems like you can only get the help you need if you are dirt poor or filty rich. Being neither, we do the best we can and sacrifice to get the job done. I'm glad to see fiero finatics are also a part of my family's challenges. Let's all support each other to make our love for these old cars help our special ones live their lives to their fullest abilities!

Bump for the new guys...

I guess I'll add myself to this list.

I have twins 13 years old, both born at 26 weeks and as a result they also developed CP with Autism. My son walks, talks and can do alot of simple chores etc. My Daughter is a little worse off, she can't talk but she can sure get across what she wants.

My Son is one of the reasons I got back into Fiero's. He developed a Pontiac fetish a couple of years ago. When I decided I was wanting to get back into cars he kept telling me " get a Pontiac dad " I thought about that and how I missed my old Fiero's so the hunt was on.

I finally found my project this summer and made sure I brought him along for the once over of the car. We pulled up and I asked him if he could tell what kind of car it was. He didn't know Fiero but he saw Pontiac on the back and got a bit excited. We had a look and he sat behind the wheel, I asked him if we should take this car home and the kid just beamed, we did take it home and now it sits waiting for it's turn in the shop.

Every day he walks past the car on the way to the school bus he will reach out and touch it, and I'll be damned if that look in his eye isn't love for the car. He will never be able to legaly drive but I'll make damn sure he gets to drive this one at some point in time.

I've read this thread many times and posted a few times.I've not read one complaint about having a special needs child even though,you know,some may go before you.I have 5 children,13 grandchildren,and 2.5 great grandchildren and they are all ( for want of a better word) normal,active people and I love them very much.All I had to do was the easy stuff like,teaching them to drive,helping with homework,like I said,easy stuff.It takes a special person to raise a special needs child.If there was a parents Hall Of Fame,you would all be in it ! I admire you all.God bless you. Hugh