My heart goes out to all of you folks. My oldest son doesn't have any real "special needs", but he has been diagnosed with Tourette's Syndrome. He has a "mild" version so far so it's quite easy to handle. My wife just did a presentation to his 4'th grade class on it. Everyone was great. My daughter was at a high risk for multiple complications when we chose to carry out the pregnancy. I thank God that she is a beautiful, healthy little girl. - Now my eyes are tearing up -

Peace....
Bob

quote Originally posted by RCR: My heart goes out to all of you folks. My oldest son doesn't have any real "special needs", but he has been diagnosed with Tourette's Syndrome. He has a "mild" version so far so it's quite easy to handle. My wife just did a presentation to his 4'th grade class on it. Everyone was great. My daughter was at a high risk for multiple complications when we chose to carry out the pregnancy. I thank God that she is a beautiful, healthy little girl. - Now my eyes are tearing up - Peace.... Bob

with tourette's when a child or adult will lash out showing there tourette's is it only in the form of curse words or can it be saying anything ?

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Actually, Tourette's is misunderstood. I thought swearing was a part of it too. Most people have uncontrollable actions, such as twitching. That's what my son does. His face will start to twitch when he is stressed. Once, I thought he was starting to have a seizure, but it turned out to be a bad tick. (My wife has had seizures before - not fun). Other's may swear or say a combination of words. It's really strange how it affects people differently.

Bob

A heads up to those out there, Al Roker of the Today Show (instermental in the firing of Don Imus for his "Comedy" slurs) made his own comments in a "Comedy" gesture last thursday making fun of people who have epilepic seizures, basicly the london 2012 Olympic logo is possibly causing problems with people with epilepsy:

and the Today show had a Poll, and this is what Al Roker said: "Well, we asked you to weigh in on our Web site in an informal poll; those of you who could get up off the floor after shaking around were able to actually log in . . . " ( link to site: http://www.nypost.com/seven...tv_michael_starr.htm )

This is what this Hypocrite said about Imus: ( link to site: http://allday.msnbc.msn.com...07/04/10/116906.aspx )
I, for one, am really tired of the diatribes, the “humor” at others’ expense, the cruelty that passes for “funny”. Don Imus isn’t the only one doing this, but today he’s the one in the hot seat.

I didnt search for the audio, but there was laughter on it from some of the other staff. I never liked Imus myself, but im sick of the double standards the media is doing. If you have any comments email today@msnbc.com

[This message has been edited by Back On Holiday (edited 06-11-2007).]

quote Originally posted by Back On Holiday: A heads up to those out there, Al Roker of the Today Show (instermental in the firing of Don Imus for his "Comedy" slurs) made his own comments in a "Comedy" gesture last thursday making fun of people who have epilepic seizures, basicly the london 2012 Olympic logo is possibly causing problems with people with epilepsy: and the Today show had a Poll, and this is what Al Roker said: "Well, we asked you to weigh in on our Web site in an informal poll; those of you who could get up off the floor after shaking around were able to actually log in . . . " ( link to site: http://www.nypost.com/seven...tv_michael_starr.htm ) This is what this Hypocrite said about Imus: ( link to site: http://allday.msnbc.msn.com...07/04/10/116906.aspx ) I, for one, am really tired of the diatribes, the “humor” at others’ expense, the cruelty that passes for “funny”. Don Imus isn’t the only one doing this, but today he’s the one in the hot seat. I didnt search for the audio, but there was laughter on it from some of the other staff. I never liked Imus myself, but im sick of the double standards the media is doing. If you have any comments email today@msnbc.com

Most people just don't get it - until they are on the other end of the barrel.

I have patience for those ignorant of our kids' differences. I have to be. I used to be one of them before we had Kale.

The best thing to do is to educate. Once people realize how hurtful these things are, most will change. Unfortunately, most never realize it - or even give it a second thought. I bet things would change if they got to be a part of our special peoples' lives for even one day.

My wife actually wants to adopt a kid with Down syndrome. That's how much little Kale has changed our lives for the better. I think that says a lot!

Thanks for keeping this thread alive-

Bump to keep this one alive

August bump

Bump

And thanks to AusFiero for hosting the local Down syndrome website in time for our annual fund raiser. He helped us make $13k! He's da man!

www.angelsforeverup.org

New to the PFF. Glad I joined. Looks like alot of good people. We have been lucky with our 3 year old, she has mild CP & mild PMD. (rare) She has no mental incapasities just physical and speech disabilities. She is taking all the usual therapies and they are helping. The seizures in the beginning where a bit of a shock. It was no treat coming home from a fun day out and finding her in the middle of a seizure when i went to take her out of the car. Your first thought is "another thing this little one has to deal with!"
Good news though - Caits has been seizure free for over a year now, which seems to coincide with the digestive enzymes and "real' active cultures she gets from her organic yogurt. It was suggested to me by a customer. She is walking with the help of leg braces and even finished a race for special needs kid -- she finished 1/4 of a mile in 40 minutes. She now prefers to walk on her own. We only had a few "curious" looks from strangers, but the worst was at BabiesRUs, another customer,with a baby of her own! I just looked at her and than her baby and slowly shook my head - she looked to ground. My other 2 daughters are fine. Well thats enough bable from me.....back to my search for a Fiero replacement. (replacing the one i sold over 15 years ago>>>idiot!!
D-----

My daughter is autistic, she is the lovingest child . We have always told her she can do anything. She has always been in special ed classes, but she is a learner and she is a manager for the girls volleyball team at high school, she also works in the school store. She loves to work with her hands and play computer games. I have had her helping me out on the reloading table when I have been reloading many times. She is very popular in school and has been nominated for Home Coming Queen her junior year.

My daughter has high level autism (she is 4) and my son is on anti-psychotics for the rest of his life (he is 15). I don't look at them as problems though as my daughter is so sweet, and since her special ed classes (our local community hospital has her enrolled in an extremely hands-on pre-K school so that they can observe and help her... kind of a mutually beneficial thing) she has been advancing very well. Still very frustrating at times I will admit. My son, since he has been on his meds, and loves taking them I might add, has been very successful both in school and at home. We noticed his problem when he was about 9 and started freaking out on us because we did not believe that he was an alien. I know that may sound funny, and was to begin with... sort of... but as it progressed, he became very violent and started planning Colombine style revenge tactics for his school because everyone there hated him for being so different. The school he attended was horrible too, because they permitted the bullies to do what they did, and did not care too much for my son because he was so rebellious... well duh! Anyways, after a while and many trips to many doctors, one of them finally figured it out and started him on medication. After a few adjustments, he was absolutely fantastic. He changed schools and went from a 2.1gpa to a 4.0. He will be graduating with honors at the end of the next school year as a Junior. All in all, I must admit that we have been extremely fortunate with the help we have received and I hope that the rest of you with children with disabilities have the same fortune.

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Phil
Always trying to create something new!
Philero ~ Phil and his Fiero, melding into one (soon to be my license plate too!)

Hi everyone I am 35 years old and my girl is a healthy 2 1/2 year old. But I have a disability call Progressive spastic paraperises. A bunch of laten words that mean my legs don't work very well. I am wheel chair assested and walk short distences with a cane life for me has bin great my parents have bin the most supportive parents ever. So all that love you'r kids through and through thumbs way up hi. More than likely once they stop being hyper normal (trying really hard to be normal) and except that thay are differant like everybody else hehe. So keep up the great work perants thay will be great kids. Love the post keep them coming.

P.S. I spell thing the way thay sound always have always will sorry for the pore spelling

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Happiness is a choice

Hey guys just now found this thread. I have a dad that has epilepsy. In the past 16 years its been pretty controlled but for a while when I was younger, around 13, his seizures were very bad. It wasnt anything for him to have a seizure (grand mal-worst you can have). the first time I saw him have one was when I was about 7 years old. We were at home getting ready for dinner and he just collapsed and starting shaking severely. I was so scacred that I ran out of my house in only my underwear in the snow to the next house up the hill. Even to this day, my dad (who is now 64) has a hard time with his equalibrium. He stumbles sometimes and gets very dizzy. He's still a very hard working man to this day and is in good health other than the epilepsy. His epilepsy started in 1969 when he was hit 2 times in the head with a bumper jack handle while living in Cleveland, Ohio. Yes at the time, my dad was kind of a hoodlum but held a very good job as a millwright at a J and L Steel when he was injured. Im now 29 and have a 9 year old of my own and Im just lucky that my son is fine. My hat goes off to you guys and girls that have the children with special needs. Im sure its very physical and mentally straining to take care of them but its woth it.

i am to young to have kids. but i have ADHD. i will amit when i was was younger 10 or so i use to make fun of those kids. (try to fit in with the crowds) but once i hit middle school i would stick up for those kids and help them out. i nearly got into a few fights with kids that would be picking on the special needs kid. i know what i did helping out those kid don't make up for the pain of the kids that i teased when i was little but i know the kids i did help were a lot happier. i also have a cousin that has muscular distrafi (sp way off i know). to this day if i see that some one with special needs need help i will go out of my way to help them.

HeavyRfoot,

Thank you.

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Phil
Always trying to create something new!
Philero ~ Phil and his Fiero, melding into one (soon to be my license plate too!)

Thanks for the posts. I guess it's obvious that parents make a big difference in their kids' lives. Keep up the great work!

To update my boy, Kale: his speech therapist told us that she has never seen a kid with Down syndrome as smart as him. At 2 1/2, he understands most of what we say to him and he can repeat most small words. So, as all his other therapists say, he is very high cognitively.

They say that kids with Ds are either high cognitively or physically, but rarely both. His physical skills are great except walking, which puts him in the low motor skill category. Funny thing is that he is able to support his own weight just fine, and can stand up as long as he wants to as long as he has something to hang on to. I think the problem is that he is too smart to walk. He personally likes the security of having all four on the ground. He's pretty darn fast that way - so why waste time walking when he would go slower than he does now (initially)? Walking will come - and I am in no hurry as long as he can say "Daddy."

Anyway, keep supporting those that need a little - or a lot of help. The benefits are something that people with average kids usually don't understand.

hello everyone im 36 yrs old and i hv 2 kids that are fine 9yr son and a 5yr daughter but i do understand where you all are comming from see i hv epilepsy i can no longer do long distance driving.im a mech and it getts tricky some times but you gotta enjoy life to the fullest hv fun .oh and keep the fieros alive

claudio

quote Originally posted by Philero: but as it progressed, he became very violent and started planning Colombine style revenge tactics for his school because everyone there hated him for being so different. The school he attended was horrible too, because they permitted the bullies to do what they did, and did not care too much for my son because he was so rebellious... well duh! Anyways, after a while and many trips to many doctors, one of them finally figured it out and started him on medication. After a few adjustments, he was absolutely fantastic. He changed schools and went from a 2.1gpa to a 4.0. He will be graduating with honors at the end of the next school year as a Junior.

Glad to hear your son is doing great !

Thank you FlyingD... I really appreciate it!

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Phil
Always trying to create something new!
Philero ~ Phil and his Fiero, melding into one (soon to be my license plate too!)

God bless you all, the world is a better place because of our hearts.

I don't have a kid with special needs but recently lost my only uncle Leonard Harry Day, II (or Budgie as the family called him). He had Down's Syndrome and absolutely LOVED my obsession with cars. He and I spent part of the past summer working on the Fiero together and although his ability to comprehend what I was doing was extremely limited, it would thrill him no end when I asked him to hand me something or for his opinion. If there is such a thing as loving unconditionally, Budgie did it. But if he didn't like you, my advice was to "CYA." He had no problem hugging you and holding you until his arms got weak but he could also look someone directly in the eye and tell them in no uncertain terms to find a different place to haunt!

His death at age 61 in August was a testament to the care and love he'd received throughout his life. I've been told that the average lifespan of a DS kid is 35-40. As he was several years older than me, I've never lived in a world without him. In September, the family took Budgie's ashes and spread them under a sapling we planted. Since I'm the only family member living on our land full time, I have the honor of caring for the Budgie Bush, as we call it.

I don't think a day goes by that I don't think of him. My eyes are welling up just writing this. To those families out there caring for special loved ones, God Bless you.

Sincerely.

I had to wait until I got home to post my favorite picture of "Unka Budge" , circa 1965. As you can tell, he worshipped Cassius Clay (he NEVER would call him Ali! )

[This message has been edited by Doni Hagan (edited 11-02-2007).]

After reading this thread for the second and third time, I'm posting for the second time.After this,I will never look at the people posting here in the same way.I can't type anymore because the keyboard is getting hard to see.

Doni, I am sorry to hear of your loss and I thank you for sharing your thoughts and memories.

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Phil
Always trying to create something new!
Philero ~ Phil and his Fiero, melding into one (soon to be my license plate too!)

Thanks, Doni! The average life-span of those with Ds is much higher these days - thankfully.

My biggest worry is that my wife and I will live longer than him. My other biggest worry is that we won't live longer than him...

quote Originally posted by Saxman: Thanks, Doni! The average life-span of those with Ds is much higher these days - thankfully. My biggest worry is that my wife and I will live longer than him. My other biggest worry is that we won't live longer than him...

He'll be just fine...he's got great parents.

I agree love goes a long way.


"Kindnees is a hard thing to give away because it keeps coming back to you"

Bump!

Kiwanis Intrernational suports Aktion club.
Handicaped and disabled are welcomed to join, with others, in service to the community.
As a Kiwanis advisor to our local Aktion Club, I've never seen a group of people, so willing to help others as 'my' 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, unlike owner

God bless all those in need and all those helping them.

Christine and I don't have any children yet, but if any of them end up having special needs we're ready to drop everything else to attend to them. As I was reading this she just asked me if we should adopt a child with down syndrome. I think I wouldn't mind at all, providing we could financially manage, though I'd still like to make our own children as well.

Blessed are the poor in spirit: for theirs is the kingdom of heaven.
Blessed are the meek: for they shall posses the land.
Blessed are they who mourn: for they shall be comforted.
Blessed are they that hunger and thirst after justice: for they shall have their fill.
Blessed are the merciful: for they shall obtain mercy.
Blessed are the clean of heart: for they shall see God.
Blessed are the peacemakers: for they shall be called the children of God.
Blessed are they that suffer persecution for justice' sake, for theirs is the kingdom of heaven.

My wife is dying to adopt a kid with Down syndrome. She would tell you to go for it, ALLTRBO. She gets the emails (only one or two a year) with Ds kids looking for a home. She would get two more if it were up to her!

A couple months ago, a Chinese family came over here to get medical help for their baby - and left him here for adoption when it was done. We came really close to making a phone call on that one, but I got selfish and decided to focus even more on Kale and the Down syndrome non-profit (and the garage, of course). Let me know if you want me to forward any of the emails to you as they come in.

My advice is to have one of your own (since you want one of your own eventually), then adopt. That way, the older kid is an inspiration to the adopted one - and you have some help entertaining/educating him. Just my though on that one. Kale is the last of 3 kids for us and the older ones really make a difference to him.

Cheers!

Our heart goes out to all the parents and especially the children with special needs. Without the parent's intervention these kids would not have a hope in hell. The parents through their love for the children and efforts is what makes the differences in the quality of life for the kids.

As mentioned eariler, the school system becomes a love hate relationship. Without the parents constant participation the school system would rather not deal with the problem. But the school system makes the difference also and the teachers involved with the special ed departments of a particular school system. In our case, fighting the school system became a constant routine in order to ensure that our daughter received those services that are guarrenteed under both federal and state laws. Whether it be, providing the required services, interpetetors, equipment, etc. Again, as mentioned eariler then there is one teacher that makes the difference in both the quality of services and the love for the children under her or his care.

The other sad part is the indifference and shunting by the kids peer group. Those kids who are fortunate not to be in the same position as the special needs kids either mock the kids, make fun of them or simply have nothing to do with them. When all the kids with special needs only want is to be treated fairly, as an equal and to be seen a loving individual. For the kids of special needs see the world differently from us. For the most part they see no evil in the world. Are trusting in others, have a very positive attitude about their situation. I might add, a far more positive attitude than I would have considering all the situations they are placed in day to day.

For an up date on our daughter: she graduated from high school earlier this year. With honors I might add. Now the real battle begins, getting her to fit in a world that is totally indifferent to individual needs, particularly those with special needs.

Again, my hat off to those parents with special needs children for you guys are truely their hope to succeed in this world.

Mike

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....

Just to keep this thread going:

Here's a little vid of Kale from a few months ago. All is well. He can pretty much name the entire alphabet when he sees each letter. He is doing GREAT!



Sorry about the crappy quality of the video phone...

I'm suprised I didn't see this thread earlier. My son, Chris, age 9, has been diagnosed with Asperher's Syndrom and/or High Functioning Autism/PDDNOS. It's difficult for me to believe that he really has a problem. He functions well and communicates well, and is very perceptive of how people are feeeling. He lacks focus and determination and is overly sensitive to the physical world. He also acts like a spaz - he get's overly excited.

I've been very concerned about how kids will interact with him at school. However, I've been very suprised at how receptive people are to him. Maybe times have changed since I was in school; maybe people are more sensitive? Today his basketball team won thier playoff game. Chris played the entire 1st quarter. He's not a significant asset to the team, but he does play good defense - he's good at being in the way! lol!

Chris is a very sweet and very intelligent little boy. If we can get him to take care of the little things in his life, he will be fine. I'm grateful that his limitations aren't any greater.

Bump to keep this one alive.

[This message has been edited by Saxman (edited 03-18-2008).]

the pic is gone. did not try to offend.

Those of us with special needs kids should be happy with being blessed with the gift of life. Sure they were not dealt a perfect hand but hey, who among us are perfect. It's just that their imperfections are more notificable than with others.

Our daughter just turned 19. It has been a struggle all these years. First, trying to understand the condition, specially when most doctors were not aware of the condition or ever heard of it. Only about 2500 in the world. Then the battles with the schools and our social system. Was it all worth it, absolutely. No regrets there. As most of you know these kids have an affection for life. The see it with a totally different perspective than we do. They for the most part see no wrong in the world.

If we had it to do over again what would we change.......not a thing. With God's blessing she will be a survivor and has learned how to manage.

God bless the kids for they are truely miracles.

Mike

I am new hear and just reading the concern you all have for one another here is amazing.....kudos to you all.

I have a son with ADHD. My wife and I didn't think we could have kids and seven years later we had our son. I have never felt so frustrated in my life, my son hated me to no end because I was always having to correct him. After 5 trips to the principle's office in Kindergarten we knew we had a problem. It was hard for us to put him on medicine but we tried it.....oh my son is such a good boy now. He still has problems but it is much better and he can concetrate instead of just acting on impulse.


My hat is off to everyone that has a special needs family member, it is hard work but they are such a blessing.

God has a special place in heaven for all you guys and girls that take care of those who aren't as lucky(?) as you are!