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  #1  
Old 02-02-2006, 09:26 PM
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Default Anyone else have a child with a disability?

Technically I have two, but one is more obvious than the other.

My Katie is 8 and has spina bifida. She uses a wheelchair and is in the second grade. She had three surgeries this past summer that made the total to be 18! But she is a pretty normal girl. She is in her fifth year of dance class. She takes water therapy, and therefore loves to swim, which until these past surgeries she could do like a fish. She loves pink, Barbie, and cats too. She is very funny, mostly unintentional and has never met a stranger. I like to quote what I call "Katie-isms". For instance, yesterday at therapy she was admiring a baby and called her a Cutie Patootie. As we walked out she said, "I don't know what a patootie is, but she's a cute one!"

This past summer she got rods placed in her spine to correct her scoliosis (crooked spine). Usually people don't have this done until puberty,because once it is done, you cannot grow (except for the couple of inches you get from straightening the spine). But she had to have it done, and now will always be 4 feet tall.

She has a shunt to drain fluid out of her brain due to hydrocephalus, and the rods caused her shunt to malfunction (probably got kinked) so two weeks after the rod surgery, she had to have her shunt replaced (brain surgery). Then while she was in the hospital which was different from the first (first was Children's Hospital in New Orleans and second was in Baton Rouge), they went ahead and took out the staples in her back, and discovered a deep infection, almost to the rods. After a week there, she was transferred by ambulance back to New Orleans, where they did surgery to clean out the infection. She was sent home on IV antibiotics and couldn't start school for over a month.

While she was at home, supervised by her New Orleans surgeon, a not so nice "lady" called Katrina screwed things up by causing her surgeon first to be unavailable by phone, and then to have to evacuate to Houston for about six weeks. So her regular pediatrician had to take over in overseeing her treatment. Luckily her surgeon is back in New Orleans and did not suffer any damage to his house.

She usually sees him in Baton Rouge but we did go down Thanksgiving week to see him (the whole family) and was able to do things in the French Quarter like have beignets (sort of fried pastries) without having to stand in line. The kids even got teddy bears from NY State police we met at Applebees.

Oh and my other child- Nicholas is 11 and has ADHD, Obsessive Disorder, Tourette's Syndrome and an Anxiety disorder (your little sister has had 18 surgeries in 8 years- gee what a shock to be anxious). He started middle school this year in a magnet program, and having 8 classes (4 each day) has been difficult for all of us. If anyone has ever seen the show "Monk", then except for the neatness, that is my son. He has the other problem of OCD- not wanting to throw anything away, not even the packaging for toys. But he is smart- he wouldn't be in a magnet program unless he was, so I keep hoping that one day, he will find his niche (like being an "absent minded professor") and feel comfortable in his life. I have to admit that when people at church say "You are the one who has a child with special needs," I answer "Yes, and I also have a child in a wheelchair!" Luckily I have found a Bible study run by two female neurologists for moms of kids with special needs, so I have some people in my life who can understand.

So I would love to share info with other moms of special needs kids. Also I used to be a special ed preschool teacher, so I can be a good resource if you need it.

Nancy in Baton Rouge
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  #2  
Old 02-02-2006, 09:38 PM
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WOW! You have your hands full!

My children don't have any disabilities except my son who, like I posted earlier, has a bit of OCD. He gets it from me, I think. It doesn't bother either of us really. Just people who are around us who get irritated, because I HAVE to get up to move the vase 1/4 inch to the spot where it belongs.

I am the Administrator for a group home for deaf and developmentally disabled adults that my grandmother started 18 years ago. My grandma (as well as 85% of my family) is deaf.

My little brother is 12 and he has ADHD. He hates his medication and most of the time refuses to take it (I don't blame him, as I don't take mine) because it makes him feel weird. It's difficult to drive when someone is next to you in the car turning all the knobs, flipping the visor up and down and playing with the electric windows. We've been trying to find another option for him, but we can't even keep him busy for longer than a minute.
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Old 02-02-2006, 09:55 PM
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I feel for both of you.
I don't have any special needs children either,
But I myself suffer from Panic Disorder, mild OCD and
severe depression.
I am pretty much home bound.
I quit driving about 17 years ago and I stopped going out
alone.
I only go out of my home when a friend comes by to take me.
Everyday is a struggle,But I trust the Lord will get me thru it!
I also have been divorced for 18 years so it can get pretty
lonesome at times too.
What did I ever do before I got a computer? LoL......
Whats important is that I am happy!
If anyone else suffers or just needs to talk,
Im here!glow
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Old 02-02-2006, 10:17 PM
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Quote:
Originally Posted by Smoothlady
Whats important is that I am happy!
If anyone else suffers or just needs to talk,
Im here!
That attitude will get you EVERYWHERE! Your happiness is all that matters in the end!

My mom had a social anxiety disorder where she could only go to the store at 1 or 2 am and had take someone with her, but she was happy and she had a full life despite her setbacks. (The computer was the best invention on Earth to her...she got married to a great man she met on AOL, of all places. He now cares for my siblings and my nephew.)
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Old 02-02-2006, 09:56 PM
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Default Book I want to read

I saw a book at Barnes and Nobles that I want to try and get at the library. I don't have the exact title, but it has something about the Edison Gene. I think it is about kids who are ADHD and very smart like Edison with his learning disability. The author had something about people being either Hunters or Farmers with schools being set up for Farmers. It's not that people with ADHD don't pay attention, it's that they pay attention to too many things, like the Hunters of cave men days who had to keep scanning the horizon for their prey and to be safe. My hubby is ADHD also so I can relate. And though I am not OCD, I have been told I have OCD tendencies.

Nancy who needs to get to bed.
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Old 02-02-2006, 10:27 PM
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Quote:
Originally Posted by momnick8
I saw a book at Barnes and Nobles that I want to try and get at the library. I don't have the exact title, but it has something about the Edison Gene. I think it is about kids who are ADHD and very smart like Edison with his learning disability. The author had something about people being either Hunters or Farmers with schools being set up for Farmers. It's not that people with ADHD don't pay attention, it's that they pay attention to too many things, like the Hunters of cave men days who had to keep scanning the horizon for their prey and to be safe. My hubby is ADHD also so I can relate. And though I am not OCD, I have been told I have OCD tendencies.

Nancy who needs to get to bed.
Is this it?
Edison Gene: ADHD and the Gift of the Hunter Child
If so, I'm gonna take a look at it, because it sounds like something that might help. Maybe I'll have my brother read it too, if I can keep his attention on it long enough.
Him having ADHD and turning all the knobs and touching everything really drives a person with OCD nuts.
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Old 02-03-2006, 10:05 AM
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Default That's the title

Thanks for checking on it. How about having both ADHD and OCD? Does that mean my son drives himself nuts??

Nancy in Baton Rouge
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Old 02-03-2006, 11:07 AM
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Quote:
Originally Posted by momnick8
Thanks for checking on it. How about having both ADHD and OCD? Does that mean my son drives himself nuts??

Nancy in Baton Rouge
Quite possibly! I know my brother often feels his actions are annoying, but he can't stop himself. So, he gets frustrated a lot which is hard on him, because he's very emotionally sensitive.
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Old 02-03-2006, 11:04 AM
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I have an 8 year old daughter that had spinal mentingitis at 3 weeks old. She was in the hospital for awhile Tulane (new orleans). Because of the mentingitis she developed hydrocephalus and had to get a vp shunt at 10 months old. That one failed when she was 2 and we had to have Emergency surgery and she did well with that one for awhile. She had eye muscle surgery in 2000 to straighten her eyes. In 2003 she had Guillian-Barre Syndrome and was hospitalized for about 3 weeks. Then in nov 2004, her shunt failed again and we had to have it replaced, only to go trough it again about 2 weeks later. She has been doing okay since, but she goes in on Tuesday to have a ct scan and shunt series done. She has had problems off and on (headaches, double vision, and loss of memory) and we just wanted to make sure everything is okay.

Last edited by apneujahr : 02-03-2006 at 11:09 AM.
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  #10  
Old 02-03-2006, 11:10 AM
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Quote:
Originally Posted by apneujahr
I have an 8 year old daughter...
Wow...she must be so brave after all of that! Wish her luck on this next checkup!
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