Hi all

I have been a member on this site for a couple weeks now as I have been recently diagnosed wiht thoracic outlet syndrome. I've been a real mess! Anyways, in the meantime while struggling with that I've been struglging with my daughter who is 14 years old.

She was born with multiple birth defects and has had 9 surgeries since birth. Three of them were open heart surgeries and done when she was under a year old. She was not expected to live but she was a FIGHTER!

Unfortunately over the years we came across new issues and she was diagnosed with developmental delay. She was always small and behind development wise other kids her age. She was never "on track" But that was blamed on her rought start.

Then when she was in third grade and 9 years old we knew something was wrong. She was having trouble in school and she was complaing of her legs hurting along with constant headaches. I went everywhere looking for help. We even went to a Geneticist for help. We then got the diagnosis of mild spastic cerebral palsy. Wasn't expecting that. Looking at her...she looks like a normal kid but in a way that's been the problem.

She has always had problems with social skills which nobody did anything about. She used to play with things in class (tap, play with pencils, rock, etc) She would get stuck on something and need constant reminders and attention to move on. SHe had trouble listening and following directions.

As time went on...more problems came about. She was tested for central auditory processing disorder. She was found to have that and pretty severe in some areas. Ok, well we had no idea what that was and nobody really explained it. The school did NOTHING because she was getting good grades in school. She still gets no support even though she has an IEP. This IEP has not been implemented (EVER)

Now over the last year we have been putting things together. She never makes eye contact, she has no sense of time, does not communicate well, mummbles in a monotone voice, speaks in bits nad pieces and makes no sense, she thinks she makes sense though, has no social skills, can't make friends and if she makes a friend she can't keep one. She invites someone over (well I do) and then the person is left bored and trying to figure out what to do. My daughter doesn't talk or interact. She seems to live in a fantasy world, likes art and is good at it, she also started playing guitar which shocked the heck out of us (never had a lesson) and she has hand disabilities. She will play or draw for hours on end. She also onlylikes one kind of music...that's it. She hates certain noises...they bother her. Talking bothers her she says. Also over the years she has complained about clothing. She hates socks and will only wear a certain kind. She has always hated clothes and she hates to wear a coat in the winter. She hates gloves. WE just thought she was a little "weird" Also, she has weird senses. She can eat hot peppers and not even say they are hot. She has eaten habanero peppers. She likes weird things and not typical kid food. She's even gone through the eating disorders. She has tried smoking, body piercing, tongue piercing and FELT NO PAIN! NOTHING! She takes hot showers where the paint comes off the wall and says it doesn't feel hot. She picked up a glass dish out of the oven a couple days ago without an oven mitt..felt nothing!

Now we have been seeing staring spells and confusion the last several months. She says things are weird at school. She will leave a class and then end up going back to that class. We see signs of possible seizures.

I never though Autism until someone mentioned it. I always thought autism meant kids didn't communicate at all. I had no idea what it really was. I'm mixed with emotions right now.

I have been saying for years that we've been missing something and I think I was right. Now I'm frustrated...if she is diagnosed with this (been to a neuropsych for testing and seeing the neurologist friday) ...I'm gonna feel guilty. Why didn't anyone catch this sooner!

We were in litigation with the school for the last several years and they avoid uslike the plague> They refuse to see anything or evaluate her needs. She gets no support. They fight us on everything. They even are fighting the aud processing disorder saying they dont' agree. I think I know why...they are hoping we won't look further (like autism)

I need help...I need legal help and an advocate for my daugher. She has been through so much and it's not fair! I have been giving her a hard time because I don't understand. So much has been missed and thispoor kid is struggling every day.

Can anyone out there offer help or pass this along to someone who can.

WE ARE DESPERATELY IN NEED OF HELP! I'm really afraid that she's going down hill and having trouble keeping up. If she's having seizures...oh my.

Please..if anyone can help..in any way...please please contact me. No one ever seems to want to help.

Thanks for reading this!

*hug. I'm so sorry you're going through this.

Have you seen pediatric specialists? That's enormously important. In fact, if you can, see about getting a team eval with several specialists. Then they can all observe her together and discuss their findings from their various professional perspectives. A hosp with a child developmental center would be the best facility, if you have one.


Good luck!

LIZARD

Welcome to the autism forum, I am sorry for how much trouble the school is giving you. It sounds to me like your dd is having partial seizures. My son has those too and takes medication for controlling them, but it took an EEG ordered by the ped neuro before we had proof he was having up to 300 of these a day. It was no wonder he couldn't concentrate, he was having uncontrolled seizures.

It also sound slike maybe she's got asperger's or high functioning autism, but that is something only a diagnotician can tell you for sure. I'm just like you, a concerned mom of a child affected by a devastating disorder, that has me looking for answers. The school is breaking the law by not enforcing her IEP like that I don't know who you would turn to in your area for help but this is a website that you might get some help from:

http://www.wrightslaw.com/

They have all kinds of articles and things about the law and IEP help I wish I had more to offer you but this is the only thing I can think of to maybe help you. We're here for you though, and you're not alone. Don't be so hard on yourself if they do determine she has autism/aspergers because you're not expected to catch everything, the dr's are though, they should have seen it sooner. It's not your fault though, so don't blame yourself okay?

Just wanted to send (((HUGS))) My son was not DXed until he was 8 and he is doing so much better now.

DO NOT FEEL GUILTY

you've done your best,the doctor should understand and focalize the problem not you......

I remember when my son was about 18 months and I was worried as I had the sensation there was something wrong with him...my husband,who's a doctor,told me I was too anxious and BORING,his ped told me Enrico was ok.

A few months later Enrico had his first seizure,and later (much more later)He was diagnosed PDD-NOS.

He's a malformation on his right parietal and occipital lobe.

So,do not feel guilty,sometimes the problem is just to find the right doctor in the right moment.

All my love to you
Laura