Pediatric neuro appt. today...very disappointing - Autism Spectrum Message Board

NaomiR · 06-03-2005, 12:29 PM

Well, I guess this board is not where I belong anyway. I have spent the past 6 months researching autism, remedies, supplements, and therapies while waiting for our appt. My intentions were to implement the GF/CF diet (already GF), begin DMG and the Omega 3's, and start some other therapies.

Well, today we were given the diagnosis of mental retardation with autistic tendencies. He also has severe sensory integration issues. He also has a lot of low muscle tone problems.

After hearing the 'label', we were sent on our way, no hope for the future, no help... So I came home with my 3 yr old son and began searching for things to aid his brain development. I can't find ANYTHING!! I can't even find an active discussion board/forum for children with MR.

He will begin PPCD in the fall. However, they are not willing to provide PT or OT because they state it is not academically necessary.

So, now I am internally hurting. Maybe I should have prepared myself emotionally....I probably would have felt the same way with an autistic diagnosis but I knew there were some promising ways to help autistic children.

drasdma · 06-03-2005, 12:40 PM

Oh my. You should never give up hope. I am so sorry about your appointment today. Have you ever heard of doctors giving the most grimm news and being absolutely wrong about their predictions? You know after all it is called "medical practice" they are good but not always correct. So on that note don't give up your hopes and dreams for your child. If it turns out he is the walmart greeter make sure he is the best. But do not give up!! Take time to lick your wounds and then get in there. We live in Illinois what state do you live in?

AggieMom · 06-03-2005, 01:37 PM

I don't know what the ped.neuro. is basing the MR diagnosis on, but 3 seems young for such a harsh diagnosis unless there is some concrete diagnostic reason- such as an abnormal MRI or a chromosonal error. I didn't really care for the first ped.neuro. that we saw, but I had to do something while waiting to get into the Developmental Pediatrician that was recommended to us- it took over 6mo to get into her and I was able to see the Ped. Nero. right away. The Pediatric Neurologist was able to get us started with an RX for speech and OT so we started going to a therapy office right away. Our insurance covered it until this year- but that's another thread... Anyway, I guess I'm just saying that one person's opinion is not the end of it. Your child has a long way to go and as it was said before- the Doctors don't always know everything. Keep your hopes up and continue to do everything you are able to for your child. Get all the help/services you can and don't take No for an answer. Good Luck.
Also, there was a documentary on recently about a woman who was thought to be MR until she was old enough to communicate through a keyboard and while she still needs help as an adult with day to day living, she is in college and is successful. Never give up!

momofchris · 06-04-2005, 06:41 AM

Chris had his tri annual iep for school a few weeks ago and it said according to his scores he could be considered mentally retarted. I personally don't belive it. He does not speak (much). so how could they dx this is beyond me?? I talked to his doc and she said that she didn't feel like he was mr either. I f you can I would get another opinion. I would look into seeing if you can get him into early intervention and they would be able to get you some help for your child. I felt horrible after that meeting but he is still my baby and has made so much progress the past 6 months that I am not going to let a label get to me.

AggieMom · 06-04-2005, 08:55 AM

My son ( and from what I understand, a lot of Autistic kids) does not score well on "tests". Most of the tests that mesure IQ are not geared toward Autistic or non verbal kids. I would not give up hope- a lot of ASD kids score within the MR range, but it is not necessarily a "true" score. My son is 7 now and reads and does math way above the Kindergarten level. It is not because he's some kind of "savant" but because of all the work we and his teachers and therapists have done. No one who has worked with him would say he's MR, but I bet he would still score "low" on an IQ test. On the so called "positive" side, I know a family who's son was given an MR diagnosis and that allowed them to get services and funding through the Mental Health/Mental Retardation organization that they wouldn't have been elligible for without the diagnosis- I don't think their son is MR either- he's 10 now and doing very well in school, but he is still Autistic and has all the issues that go along with that. Hang in there.