Anyone have any special needs kids?

[ChrisnSteph]

Just curious if anyone else is raising a child with special needs. My 5 month old has trisomy 14, non mosaic. It's usually not compatible with life, and we were told he wouldn't survive birth, but here he is, and we love him to pieces! He also has dandy walker syndrome, which means he's missing a large portion of his brain. We don't know how long he'll be with us, could be months or years, but we will cherish him every second. He's our second child to be affected with a chromosome problem. Our first angel passed away 4 years ago, wo we aren't new to this. I find it hard sometimes when I have to explain to everyone that Ryan's "not a preemie....". I feel like I'm going to sock the eye of the next person who asks what's wrong with him or if he was premature! AGGH! Anyhow, just a rant. I was just wondering if anyone else out there is going through a similar experience.

 

[Rowena]

My situation isn't simialr to yours. Yet, I do have a special needs, disabled child. My 7 year ol daughter has autism. You'd never know it by looking at her, but I don't think she comprehends oral language. My Dh once said she has auditory dislexia and it's the best explanation I've heard. She's a bright kid, but the way her brain filters language....she's Tarzan. She relies on visual cues to seek what's expected of her and has found alternate methods of communication at home.

I don't know your pain, but I do in some respect. We always want so much for our kids....But, them just being our kids is enough. Love knows no limitations and surprises us in ways we never knew dreamed possible.

 

[HugsForEeyore]

It is wonderful to hear that Ryan is doing so well!!

My nephew Ben was born with a very rare syndrome, a autosomal recessive trait. He has a varient of the syndrome known as Acrocephalosyndactyly, and is very similar to Apert's Syndrome. It involves severe skull deformities, fused/webbed fingers and toes, potential mental retardation and learning disabilities, and other abnormalities. Only a handful of people in the whole USA has his varient of the syndome.

We had no idea what to expect when he was born, as so little is known about his type of syndrome. But, now at 9 years old, he is very much a normal boy! He is one grade behind where he should be, and has alot of trouble in math, but we can live with that! He had numerous surgeries as an infant, but his skull is stable for now, so no new surgeries are scheduled, which is great! He has tough moments to deal with, since he gets teased often, and he will never look "normal". Must say, though, Disney is the most wonderful place to take him, as the CM's (especially the characters) are just wonderful with the special kids! Ben is in the link in my signature, as he loves his autographs and characters!

Continue to cherish your wonderful Ryan!

 

[eeyore45]

Hope you check out the Disability thread here - - there was an intro thread, it may be buried, but its a great read! Lots have posted their experiences with Give Kids the World!

I have 2 sons that are Hard of Hearing (as well as my dh)... and I'm a teacher, that loves working with special needs kids, right now I sub, I sub as a one on one aide for kids with autism that are mainstreamed, and I work with the kids that are mainstreamed that are deaf, or hard of hearing.

I also helped my friend who's dd was born without a brain. I cant remember the long name, it took 6 months and a bout with almost kidney failure to diagnose her dd... her dd has a frontal lobe, and her brain stem in tack, she is now 3, and at the time, my friend was told most dont survive birth, etc...
she is on feeding tubes, and has to give sodium shots, etc...

{{hugs}}

 

[julia & nicks mom]

Hard of Hearing (as well as my dh)

you mean they all aren't?!?!?!?!

Actually my DH is too and was born with facial birth defects - he has had 10 surgeries - some of them are very interesting and he was chronicled in medical journals (they replaced his jaw with a rib - did you know ribs grow back?)
and
My niece has had difficulties her whole life - nothing MAJOR but a lot of things that can't be connected -
she has had every test known to man done to her - there is a syndrome she MIGHT have that would cause tumors in her stomach but it can't be diagnosed so she has to have an U/S every month - one month they discoverd she has two spleens ; she had a significant speech delay and has had speech and physical therapy since age 2 (they moved when she was 18 m so it took a while to fully recognize everything)

she takes so much of my sister's energy and in the end - nothing is really wrong with her - she just seems to get bad breaks - i.e. broke her collar bone in delivery and my sister didn't know for two weeks; cracked her head falling off my dad's shoulders, broke her leg falling off a scooter - the list goes on - my sister cries so hard when things happen to her - sometimes she says - just once can something happen to one of my other kids!

Watching my sister with her and what they go through gives me such respect and admiration for those who go through bigger things with their children - and I want to send you all hugs!!

okay - I just realized the univisible word in my sig says not - I am moving it b/c it looks like I said - not to giving you hugs - if you read this before I moved it - please accept my apologies!)

 

[ChrisnSteph]

I didn't realize there was a disability thread here, thanks for the info!

Thanks for sharing your children's stories. I'm just sitting here tonight, keeping an eye on Ryan as he lay in his bassinet next to me, torn between the love I have for him and the daily stress of taking care of him. My neighbor had her baby a few weeks after I had Ryan, and I saw her today with her baby. She's so much bigger than Ryan, and it made me sad. I know you shouldn't compare but I'm only human! I'm still trying to adjust to our new life with Ryan, our new "normal", which really isn't normal at all! Meds, medical equipment, weekly trips to doctors and specialists, none of who really have the answers I'm looking for. Life can be so unfair sometimes, but I know this already. I'm so scared to say that because the last time I whined "how come my life can't be normal", I lost my son a week later. I could really go on a long rant tonight, but I'm tired and I think I'll save it for later. Thanks for letting me vent.

 

[eeyore45]

Your post just reminded me of the Holland Poem -

dont know if you've read this, or if you want to read it now...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

[Rowena]

Your post just reminded me of the Holland Poem -

dont know if you've read this, or if you want to read it now...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Wow, I have seen this before. Used most often on the net trying to describe autism. As far as I can tell it's credited to Emily Perl Kingsley, and the autism community has embraced this basic idea. I hope other families who find comfort in it's words and ideas do as well. I and my daughter's teacher's have found comfort and sense in these words.

 

[s&k'smom]

Yes definately check out the disability thread. There is tons of support there and you'll find so many of us raising children with such varying issues. My son has been diagnosed as autistic and an anxiety disorder. My niece was born profoundly ******** with lots of other issues. She was with us for almost seven years and died about 4 1/2 weeks after my son was born and she is most definately his guardian angel. Not it's not an easy life but I always think these kids are sent to us for a reason. What are we supposed to learn from this experience in life. Yeah we are tired, broke, stressed, anxious and scared. But you know he has done more than anyone thought and has taught me about myself I would never had known without him. I have long gotten over the what ifs, it takes to much time. Always come here to the Dis if you need support there are so many of us here on this site and we would love to be here for you. Your son is very lucky to have you, you are just what he needs.

 

[DisneyMomx7]

My 21 year old son has Asperger's syndrome. I totally agree about the "Holland" poem. If I had spent a lifetime being sad I didn't get to Italy I wouldn't have had a chance to see what Holland had to offer. That's not to say that given the chance I wouldn't change it if I could. Another ds was diagnosed with Ewings Sarcoma (bone cancer) when he was three. He had his right leg amputated and underwent a year of chemotherapy. He's done wonderfully and is now 20. Most people look at him and think he's the handicapped one, asperger's is more of an invisible disability.