quote Originally posted by 86blackse: i have a 19 yr old son who is deaf. i wish somehow i could give him my ears. im 40 now and have seen alot and heard alot but he has only began life. he is 19 but inmaturity comes with being deaf. my wife of 19 yrs works really hard with him and he has came along way. yea kids at school make fun of him sometime and trust me high school kids are crul .. sometimes i believe GOD will remember the crul things done by other healthy kids when its their time to have their kids.. my son always says when he gets to heaven GOD will give him new ears.. i take him deer hunting with me and he just sits there never hearing a thing asking if i hear anything ever little bit,,, and thats when i break down. he has never heard a crow yelping or a fish break the water but he never lets it bother him, he always ask me what it sounded like...and thats the hard part for me, i wish somehow he could hear atleast the little things in life we take for granted.. it take a MAN to raise a child with a disability.. a real man with a heart. and a mothers love only a mother can give ... my thoughts and prayers to each one of you....

Thanks for the post. It makes me appreciate what I have even more. Explaining what things sound like to someone who can't has got to be the hardest thing.

I dont have any kids myself, but i am a special needs teacher\ firefighter. These kids have the ability to reach inside your chest, grab your heart and never let go. I work everyday with kids that have downs, autism, cp, anglemans etc. I couldnt ever see myself doing any other job. i am blessed to work with these awsome kids!

Great to hear from you!

Just another bump to keep this one alive-

Bump for the new guys

My Fiance has a niece that was born with Down Syndrome, and she is the cutest, most fun little girl I have ever seen. Contrary to popular belief, she is quite intelligent, and has learned sign language to over come her inability to speak, and helps out around the house and with her baby sister and newborn baby brother more than any other kid her age I have ever seen! Also, one of my close friends in highschool had Cerebal Palsy (I know I spelled that incorrect), and last I talked to him he is helping coach some highschool sports teams as well as working a full time job and taking night courses. It was so nice to read your OP and hear how proud you are and how much you love your child, as sometimes (and heartbreakingly) that is not always the case.

My oldest daughter has Asperger's syndrome. A high level form of Autism.

I was also diagnosed with it several years ago, and it goes a long way toward explaining how I was as a child. Things I remember feeling and doing when I was younger, I see my daughter doing now at age 8.

I've posted here for a while, I don't think I have ever said, but my real name is Lee (38 y/o).

My youngest son (Sean) has been diagnosed with Autism..... I am still fighting it though , not because I don't think there is anything wrong... I think it's "Thimiserol Poisoning". They appear the same to most doctors.

He did the thing where he would flip a car over and just spin the wheels for hours... He also used to flap his hands up and down, but both of these seemed to have decreased quite a bit.

He is highly functioning 4 year old. He doesn't talk very much, and when he does, he tends to babble a lot. Other than that he is VERY smart. We have caught him doing math on about an 8 y/o level.

Anyway , he's VERY cute, VERY photogenic, and VERY affectionate. It is his affection that throws me off, thats why I think it's mercury poison. Most autistic tend to be more anti-social, and don't really like to be touched.... He loves it, loves hugs and kisses.

I do also have an 8 year old (Ryan) who does not have autism... (I can't say he's fine, and I can't say he's normal, because that would be unfair to Sean)..... Ryan , is WICKED Smart..... And Lazy....... He scored over all in the 70th percentile on his Iowa tests, and a 96% on his vocabulary skills. Anyway , they fact that they are so different tens to be a source of frustration for everyone , especially Ryan.... I think he thinks that sometimes we pick on him, and in reality I do tend to be a little hard on him at times, but thats only to push him (a little).


Anyway , they are VERY good boys......

Thanks for sharing you stories. It sounds like everyone is past that stage I remember so well - that few months just after you find out something is different.

We didn't know Kale had Ds until he was 3 months old. He doesn't have the strong signs of it - like the single crease of the palm, the gap between the first two toes, ears lower than the eyes or even the strong almond shape of the eyes. Muscle tone is pretty darn good, too! Looking back, it was nice to go through the whole pregnancy plus 3 extra months before the news hit us. My wife thought there was something going on, but it wasn't confirmed until 3 months.

At 3, he was able to say each letter of the alphabet and count to 10 so we are extremely pleased. He can walk forever - as long as someone is holding his hand. Otherwise, he crawls. He started using sign language a year or so ago, but his speech is well enough that he can say word and repeat them for the most part.

He actually gets on the school bus and starts pre-school after the summer, so that will be interesting. All in all, things are great. I can't wait until he can walk around the garage and hand me tools! I need someone out there to help me if any of these damn Fieros ever fall off the jacks on me!

Thanks again for sharing, you guys!

Our 12 year old son has type 1 diabetes. He was diagnosed last Christmas day and had to spend the following week in the hospital He's doing great though and even gives himself his own injections now. Were hoping he'll want to try the pump soon. It seems like new break throughs are coming out every month...maybe there will be a cure soon.

p.s. My heart goes out to all of you and your children.
Marc

[This message has been edited by Gokart (edited 05-29-2008).]

Good to see all the new replies.

Hi Gokart, glad to see your son is doing good. I know diabetes can be overwhelming in the beginning and being 12 must be tough. Kimberly is now 10 and still prefers her pump to injections and Michelle,6, started pumping last summer. We, as a family, are much happier with pumps. Michelle has some hard days now that she has had diabetes for 2 years. It is not easy when they ask "How come I got diabetes" or say "I hate having diabetes" I try to let her know Dr's are working on a cure and in the mean time she can do anything she wants to do.

Here is the link to the video I made for our girls JDRF Walk to Cure Diabetes Team.
http://youtube.com/watch?v=rfgxz1fXwQU

well my kids are healthy (thank god) but I'm the special needs person, I lost both arms back in 91 from electricity. I'm a single dad raising my 4 year old son (cameron) and my 7 year old daughter (harlee) and boy has it been a battle but I'm doing it, we always get the stares and pointed at all the time but its cool people are just curious and my daughter just tells people that I have robot ams lol. both my kids love helping me on our 86 se we have a save money jar for parts and the kids get accited when we can buy a part, now were getting ready to find us a 4t60 trans and its the last driveline part (hope we find one) I get to spend everyday with them teaching them and hopefully I'll create two wounderfull adults that love and cherish their children as mush as I do them.

That' s awesome, hooks. If you are close to DC, I'd love to help out.

quote Originally posted by JenzGT2: Good to see all the new replies. Hi Gokart, glad to see your son is doing good. I know diabetes can be overwhelming in the beginning and being 12 must be tough. Kimberly is now 10 and still prefers her pump to injections and Michelle,6, started pumping last summer. We, as a family, are much happier with pumps. Michelle has some hard days now that she has had diabetes for 2 years. It is not easy when they ask "How come I got diabetes" or say "I hate having diabetes" I try to let her know Dr's are working on a cure and in the mean time she can do anything she wants to do. Here is the link to the video I made for our girls JDRF Walk to Cure Diabetes Team. http://youtube.com/watch?v=rfgxz1fXwQU

Know what you mean being diabetic for 33 years and having a daughter of 23 being diabetic since 13 months old .
By that time we didn't have all the goodies ( if you can call them so ) they have now .
Had to pee on stick to get so so blood level sugar .If they take care it's gonna be fine .
I played hockey with 30's and over until i was 57 2 games a week all year round .
Good luck
Your daughter are very nice BTW

[This message has been edited by Robert 2 (edited 05-30-2008).]

Thanks Robert. I have heard stories about the old days of living with diabetes and using the pee sticks and some said they even had to sterilize and sharpen their syringes. I am glad things have advanced so much. So, being someone who has lived with diabetes so long, do you have any advice on anything I should or should not do with my girls? Especially, helping them through those teenage years?

Stay away from the goodies , do a lot of exercise , And one trick is when i have the munchie maybe it sound hard but think of getting a leg cut by gangrene caused by bad sugar level .
Also walk a lot to keep good circulation in the legs , and get sugar and fat away .
I'm not a Doctor but diabetes is a silent killer , attack every aspect of your body .
If i think of something else i'll let you know if you agree with me .

[This message has been edited by Robert 2 (edited 05-21-2009).]

Bump for the new guys!

So, any new guys have anyone special? My little guys starts pre-school next week. Wahoo!

I hope the web site is working well for you Saxman.
By the way if the system automatically sends you out a hosting bill at some point just ignore it. The system is just set up to do that by default.

I'm one of the new guys so,

We have a daughter who at 2 weeks was diagnosed with Hypothyroidism. At 4 she was diagnosed with Spastic Depleazia (sp) it's a mild form of Cerebral Palsy that mostly effects the joints in arms and legs. She's 9 now and has had several surgeries on her legs to repair her ankles. She also takes synthetic thyroid hormones everyday.

We also had a son who had trisomy 18. We didn't know he had it, we were told worst case would be hydrocephalitus ( water on the brain ), and that he would need a shunt to releave the water pressure. Trisomy 18 is similar to Downs Syndrome, but instead of a 3rd copy of the 21st chromosone he had a 3rd copy of the 18th. It's not compatible with life and we lost him 22 hours after his birth.

Other then that we have 3 other children, 2 girls and a boy. They are all perfectly health .

[This message has been edited by Khw (edited 08-26-2008).]

quote Originally posted by AusFiero: I hope the web site is working well for you Saxman. By the way if the system automatically sends you out a hosting bill at some point just ignore it. The system is just set up to do that by default.

Yes, Aus - we are in the summer slow period for angelsforeverup.org, but things will get fired up with the site again soon. I still need to learn a lot about how to change things, but you have been a huge help! Many, many thanks!

quote Originally posted by Saxman: Hi, KHW! I haven't had a chance to welcome you to the PFF madness. I imagine your daughter's other siblings keep her motivated. Mine sure do! Thanks for sharing your story. The things you have made it through certainly make parents stronger - and teach us a new level of patience. Of course - if we work on Fieros, we have a certain level of patience already. Thanks again!

Thank you Saxman.

When we lost our son we were given a list of websites to visit by the hospital for greif support. We found out from them that the loss of a child dramatically increases the odds of divorce. The different ways men and women deal with greif puts a large strain on your relationship. My wife and I decided we wouldn't let that happen. It's been five years since then and going on 11 years for our marriage.

Our other kids don't really have to keep our daughter motivated. She is very independant and has a nothing can stop me attitude. She's a little slower learning, but she won't stop trying. She even comes out to the garage with me to help me work on the Fiero .

My son has a Fatty Acid Oxidation Disorder. If you've seen the movie "Lorenzo's Oil" it's a similar situation but my son's break is further down the chain, so his condition isn't as severe as the boy in the movie. He has a Transient Primary Carnatine Deficiency, which is a condition not known to exist until 1999. For years this disorder was misdiagnosed and the children with it rarely made it to adulthood. He is autistic as a result of the disorder, and receives all kinds of therapy and special schooling.

His disorder was not fully diagnosed and treated until he was 18 months old. At that point he still wasn't even crawling. The biggest frustration for us was doctor after doctor, specialist after specialist saw him. All with pretty much the same response after running the tests they wanted. They would just shrug and say, "Well, he looks good."

Once he started receiving the proper treatment by the time he was 23 months old he was walking and talking. Now at 3 years of age he is developmentally at the level of about an 18 month old child. He is the greatest gift my family has ever been given, and we cherish every moment.

One thing about having a special needs child, is you don't take anything for granted.

My wife and I lost a daughter about 2 years before our son was born, to "unknown" causes. We now know this same genetic disorder was the cause. We actually did the research, that lead to getting the doctors to test for this, much like the parents in Lorenzo's Oil. Except we were using the power of the internet and many hours of reading medical websites going off of our son's symptoms to guide us in the right direction, instead of days on end in libraries.

I've gotta check out Lorenzo's Oil some time. So sorry to hear about your loss. Thanks for the reply.

I just found out that McCain's running mate has a baby with Down Syndrome. Perhaps if she makes it to the white house, we will get to see little Trig Palin grow up there.

I wonder if she will help things as far as the handicapped are concerned in DC? I don't thing there are any Down Syndrome groups there - just here in MD and VA.

[This message has been edited by Saxman (edited 08-29-2008).]

just want to say GOD BLESS to all those parents taking care of handicapped children - you guys are heros IMO.

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1986 GT Fiero Owner & Enthusiast
For Fiero updates, visit my site and don't forget to click on the ads!
http://educatorstop15.we.bs/fieropage.htm

if this counts, i am recovering from a traumatic brain injury. happened oct 21 2006. i flipped my vette apparently street racing. doing 160 +. my balance is a lil messed up, it was worse. i have permanent nerve damage in parts of my left hand and left foot. slur my speach and stumble like im sht faced drunk sometimes. now have a learning disability. have lots of scars. and lost my memory for the first year and a half ive been in the navy. but they dont seem to notice or care about that. its been hard for me to go to a navy life after recovering, not knowing i was in the navy then being told to act like a sailor when i dont know how to. yea, its sucked. im sure i relate to some of everyones kids.

all in all, DO NOT STREET RACE!

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1987 Fiero GT built by my brother, merlot566jka, 3500 LX9 from 06 Malibu, WOT-TECH.com 1280 grind stage 3 cam, LS6 valve springs, 1227730 ECM conversion, Darrel Morse solid aluminum cradle mounts, Truleo headers modified to fit the 3500, 36# inectors, 70mm 4.3 throttle body adapted to 3500 intake, ported heads, upper and lower intakes, lightly polished, tcemotorsports.com crank trigger wheel, CenterForce dual friction clutch, Flowtech Afterburner muffler, 2.5" piping, cat deleted, EGR deleted, SinisterPerformance tuning, C6 Corvette exhaust tips. projected to be 35 MPG with a guesstimate of 250 hp to the wheels

My buddy had a bad accident with some brain damage. They had to fill in some missing parts of his skull. His problems sound just like yours. He was a musician but never lost his ability to play guitar. His speech was slow and he "disappeared" for a few minutes each day, but he is doing well now.

He just kept plugging away and his body eventually learned how to work around it. Best of luck to you - and thanks for all the advice you have given me.

Bump for the new guys and gals...

Here we are once again sharing stories of love, courage, hope, understanding and yes...even sadness. All of us who have been touched by that special someone are hopefully better persons for that experience. I know we are, at lease I am. It has given us a better understanding of their struggle, trails and pain. There has been several comments about how the outside world treats the kids with special needs. It's from their lack of understanding and definitly their lack of love for the fellow man.

Our daughter is almost twenty, so our journey has been long but not as long as hers. There has been good moments and bad. The struggle has been mainly with the system and not so much with the indifferences of people that do not understand or who have been touched by a special needs person.

In parting, I would like to thank those with special needs that has given me the opportunity to see their world from their eyes. It has made me a better person. It has provided me a better understanding of their needs and what they want from life. The same that each and everyone of want......... for the world to see them for who they are and not what nature has given them.

God bless you all for have taken the time and shared your life with that special individual.

Mike

My first post to start this thread on 01-16-2006:

quote Originally posted by Saxman: I'm just wondering if any of you have kids with special needs. Fiero owners are a special breed in themselves, but those of us with special kids have something doubly unique to share. My 1-year old has Down Syndrome. He is the greatest kid in the world! HIs older borther and sister keep him busy, that's for sure. I'm looking forward to having him out in the garage, helping me on my cars. Anyone else have someone special?

Up until today, the little guy has always needed someone's hand to hold as he walked - even though he walks long distances with no trouble.

Well, today he walked over 80 steps to get out to the playground at pre-school. There was much more showing off when he got home. Mom cried a lot. I was on cloud nine - until I realized that my little bud won't want to hold my hand any more

Time to teach him the difference between a phillips head and flat head screwdriver!

What's new with you guys lately?

Saxman,

Glad to see this thread is still alive. Some changes since have taken place since I last posted on the topic. For as many years, thru multiple deployments my son never asked about daddy. Even when gone for 6 months I don't think he ever even notice that I wasn't there. Once I again I am on the road deplyed to the sand box and this trip had a suprise before I left home. My autistic son knew from seeing my "A" bags piled up that I was leaving again. He was all clingy and I couldn't keep him off of me. He wanted to be with dad. Pretty cool as this is a first for him and me. Shortly after leaving the house with all my bags he asked mom to go see dad at the airplanes (work).

He has come along way in a few short years. For a long time he didn't understand that people had feelings and thoughts. He treated you just like watching a cartoon on TV. The cartoon makes him laugh and so do people. You used to be a thing, not a person. He has started to see people for who they are and not just that they are there. The wheels have started to turn in his head and I can things happening in him mind.

Keep the post alive.
Paul

My daughter has always had what was mostly labeled as a learning disability.
With help in special ed classes, she graduated from high school. Today she
is 43 and has advancing blindness from RP, already legally blind. She has
her own condo, a part-time job in a nursing facility, gets around with the
assistance of a trained guide dog. Guiding Eyes for the Blind in New York
state trained and gave her the dog, an outstanding caring organization.

Glad to hear of each step, Paul. I know that feels good - making those connections. I have a friend at work dealing with the same thing. She only has to leave for two weeks at a time, though. She is leaving Thursday, actually. I'll have to ask how her son reacts when she leaves.

In the desert now, huh? Let me know when you are in the DC area again. We need to get together.

Fiamma - those support groups and assistance organizations sure make a big difference. Glad to hear she is an independent person. That is wonderful!

Andrew

Bump!

Check with your local Kiwanis Club.
http://www.aktionclub.org/
'My Kids' have so much to give and share in the Newton Aktion Club.

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Ol' Paint, 88 Base coupe auto.
Turning white on top, like owner.
Leaks a little, like owner.
Doesn't smoke....... OK, we're trying to quit.

sorry to bump an old thread but i saw this when it was going on but my password was messed up. i myself am disabled i have spinabifida,a dislocated hip so my right leg is an inch longer give or take then my left,also have very bad back problems 3 surgerys so far went for my 4th and july but pussyed out as they were about to stick me to knock me out i am gonna hold out untill my pain meds stop workin. i feel for all the parents i know my parents went through hell between all the tests surgerys at not even a month old 6 months old and 5 years old,from 13 to 15 i had a drug problem coming from my back pain and the drs didnt wanna give me pain meds since i was 12-13 but from 15 to now(18) ive been clean and happy and they have been happy since. ive been doing very well and hope to do so the rest of my long life. yea i walk a little funny and use a chair for longer stuff(more then around the house or up and down the driveway or a little further with something to hold on to) but i gotta say im happy. ive always had friends who stood behind me,and always wanted to be treated normal and i have. ive worked my ass off to get my car and the things i want. i just wanted to say to all ya guys who have a kid with a disability but a normal mind(im sorry to those who dont . but if they do treat em as normal as ya can dont let em get depressed over it and push em to go out with friends as much as possible and theyll have a good life.
i said the hardest thing i went through when i was between 13 and 17 was findin a girl who could look past the wheelchair but as i grew up they did but when they couldnt i got so depressed. but guys they'll turn out awsome and no diffrent from anyone else

would you guys be upset if i put a fundrasier to help me get closer to gettin my hand controls?

Bump for the new guys.

Great to hear your story, Fake. Thanks!

I don't have any kids, but I do have ADHD and was diagnosed as 'possibly' having Aspergers syndrome as a kid.

The scary thing is that ADHD runs in both my parents' families, and my girlfriend's family, so if we were to have kids, there's a pretty good chance we'll have our hands full!

Looks like we are on the verge of special needs child number... I dunno, depends on what you consider special needs.

Looking back, when our son was 2, I came home from work late one night and he had already been laid down for bed. I had stopped and bought him a "Hotwheels" type car (actually the Fresh Cherries Fiero). I opened the package and went into his room. He hadn't fallen asleep yet so I sat next to his crib and gave him the car. I pet his head for a little while and leaned in to give him a kiss goodnight. The whole time he held the car in one hand while spinning one of the tires over and over with his thumb on the opposite hand. I came out of the bedroom and told my wife about it, and told her it was really odd and that something just wasn't right. In my mind I had flashbacks to the movie Mercury Rising.

Our son, since he could crawl has been a head banger, in that when laid down to go to sleep he would get up like he was crawling and rock back and forth banging his head against the crib, wall or headboard. He had bald spots on his head where he hit it. We have been able to get him to stop hitting the wall, and if someone stays with him until he falls asleep we can keep him from rocking. However, if he is laid down and left in his room alone, he will still rock.

We brought these issues up with his doctor who dismissed our worries because he was really social.

Here we are 2 years later, our son is now 4 years old. Potty training just hasn't worked and his speech is limited. We've tried to teach him to count and say his ABC's but he just doesn't seem to grasp the concept. Heck, until about 4 weeks ago he didn't even realize he had thumbs. He doesn't like being touched, unless he initiates the contact. He likes to make crashing noises, like cars crashing, but will do it with anything, even the tassels on his blanket.

We took him to the Doctor on Thursday. He refused to let the Doctor touch him. I held him down so the Doctor could check his ears and afterwards he just held his hands over his ears yelling "I'm fine" and "I'm done" over and over turning red in the process. He continued until I took him out to the waiting room after we finished speaking with the Doctor. The Doctor looked at us and said "This isn't normal". My wife and I looked at each other like... Yeah, we've told you that. His behavior along with the difficulty in teaching him to talk and such prompted our Doctor to refer him to specialists. What does she want him checked out for? Autism. The exact concern we approached her about 2 years prior.

So, here we sit waiting for the appointments with the specialists. He's not as bad as Simon portrayed in the movie Mercury Rising and if he is diagnosed as Autistic, we expect him to be high functioning, atleast we hope he will be. He can talk, dress himself, feed himself and such, but he's slow at learning. It's like he just doesn't learn the same.

So a basic breakdown.

14 year old girl, A.D.D.
10 year old girl, Hypothyroidism and Cerebral Palsy (Spastic Depleazia).
8 year old girl, A.D.H.D. with a side of O.C.D.
Mathew, passed away 22 hours after birth from Trisomy 18.
4 year old boy, Autism probable.

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 love my children, I don't care what challenges are faced for us and them, we will handle them.

[This message has been edited by Khw (edited 05-08-2010).]

My daughter just celebrated her 14th birthday on friday the 7th. Before she was born we were warned
she would be born a MONGROL, I'm not insensitive or ignorant, that is the medical term we were given.
My wife had 23 ultrasounds and each one brought a new horrifying description of how our little girl was
going to be born disfigured and handicapped. We were asked if we considered abortion because of the
stress and difficulties we would encounter raising such a child. Well we hadn't considered it and it wasn't an option.

My daughter was carried full term and besides a case of yellow jaundice (pretty common) she was born perfect.
With-in months though we realize that she had complications. Low muscle tone (she didn't sit up on her own till 14 months
didn't walk till 4 years). Facial features suggested downs( it was eventually ruled out). She spent the first 3-4 years
in various braces and such. Developmentally she was delayed, growth wise she was a peanut but personallity wise she was
an angel. She has asthma and has spent her early years in and out of the hospital. As the years went on her developmental
delays became more apparent and her low muscle tone made it difficult to run and play with other children her age.
Just about every test known to man was performed on her by age ten with no luck of a diagnoses. Until frustrated with
lack of answers her doctor performed the last 3 test (all very rare syndromes) figuring at least he covered all the bases but
not figuring any of them would be her diagnoses. Months later while sitting at the kitchen table my wife and I got the
call we had been dredding or hoping for, for 10 years, A diagnoses. GREAT now we get answers and cures and ??????
Well we didn't much of any of that but we atleast had a name for it "chromosome 22q duplication" at the time my daughter
was the 11th child in the world to be diagnosed. Though no cure and no real answers it was nice to have a reason
for my daughter having to endure what she has all her life. My wife and I feel we are blessed in that though her diagnosis is
rare we realize their are others much more challenged then our daughter (and are hearts go out to those families) My daughter
was also diagnosed 2 years ago with scholiosis that will require surgery in the coming months. There are things she will never
get to do in her life but you would never know it to meet her, she is strong and extremely excited about life. I wish I had 1/2 of her resolve.
And she loves fiero's lol

thanx Ray