Having trouble getting diagnosis and is it normal

Megan - posted on 09/29/2010 ( 4 moms have responded )

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So I really have two questions but figured I would put them together. The first is a question about actually achieving a diagnosis. Our Pediatrician told us that he suspected our son was somewhere on the autism spectrum and we contacted the correct people to talk to about that, they did a basic assessment and found that he was severely behind in social and cognitive areas when he was about 2and a half. This assessment was enough to get us some therapy for him and once he turned three he was given an IEP with the school district. This allowed us even more services, although still no official diagnosis and assessment, just assessments on specific areas. There was enough that he was severely behind on that the liaison with the school district (and his primary teacher) suggested we apply for disabilities services for him. We did that thinking it might mean we could get him assessed, but no, they provide non cash services that we can access but still no assessment. It sounds horrible but we cannot afford to have the tests done out of pocket, they start at $500 in our area and go up from there. I haven't been able to work because special needs daycare is too expensive so we are a little strapped for cash and our savings is gone. His teacher is using in intern of "presenting as PDD-NOS" because she doesn't have the credentials to make an actual diagnosis. Anyone have any advice as to where I can look for help getting a diagnosis?

The second part is more validation that I am not crazy. My son rocks as he falls asleep, is this normal? Sometimes its really hard and he starts rocking into the wall and it doesn't wake him up. Also he hits himself sometimes when he is throwing a tantrum, usually if I start to ignore it he will hit himself or drop to the floor and hit his head or some other body part. Am I right in assuming this is him just trying to get my attention? I feel so helpless but he is now 4.5 and could do himself some serious damage if he keeps doing it. I know its mostly frustration at not being able to tell me what he wants, but it gets scary sometimes and I feel like a crappy mom because it happens.

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Jeannette - posted on 10/02/2010

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depending on where you are in the world as to what you can do let me know where you are i know some different resources throughout aust and us.

you are not crazy rocking is a sensory need that autistic children have they are simply doing what they need to its like spinning in chairs walking on tippy toes etc you can try a sensory diet to desensitise him some to ease both yours and your sons emotional anxiety it works a treat jumping on the trampoline, wrapping him in a yoga matt and giving him a nice squeeze will take the edge off his anxiety, you can get padded bed heads that attach to the wall may be a good idea to attatch along the wall alongside his bed. he is not trying to get your attention he is in emotional turmoile he does not understand more than likely the emotion he is feeling and it is a wave that pulls him under it gets to much and he releases his anxiety by letting go that is the only way he knows how repeatative behaviour on your part a constant comfort such as a tight hug a repeatative shhh shhh shhhh softly say over and over its ok its ok im here im here its ok its ok im here im here all of the above will work once calmed down you can try to find out what is causing the anxiety it will not be easy at first revisiting the anxiety will require you to repeat calming actions but over time you will need them less and less and it helps dramatically.

my son is 10 i get him always have up until 6 months ago no other adult did now that that battle is being won and things are on track i have time to sit back and admire all that he has achieved ......... but it is bitter sweet because now i have time to wonder how will high school turn out .......... how will his adult life be ........ will he ever get married ........ get a license or move out of home , the only 1 thing i can tell you for certain is that no matter what i love him more than life itself and i wouldnt complain if he lived with me forever because forever still isnt long enough, im sure you feel the same way about your son and it will work out it does take alot of time and patience but you can do it ..... dont forget to let me know which country you are in i can tell you which resources are available xx

Megan - posted on 10/01/2010

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Thanks Sandy. My son is already in the disabilites nonmonitary program, which means I can get services like housecleaning if I feel overwhelmed, but since he was on state childcare till he was 5 they didn't feel he needed healthcare. In WA, if a child is under 8 and has major developmental disabilities in three areas, that is enough, no further testing is needed. He is lacking in speach, comprehension, and social, which goes hand in hand because he can neither talk to or understand most kids his age. Its getting better but its still a struggle a lot of times.

Sandy - posted on 09/30/2010

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It took me almost two years to get a dx for my twins. It was shrugged offf at a "twin" thing, the speech and motor delays. Then the hearing tests, speech referral, then finally someone believed me and I got a referrel to the Chldrens behavioral clinic. Then it took a few months to get an appt. Insurance paid for all the testing. Applied to disability services, qualifed and now my boys are "legally disabled" thru the state and will always be covered under state.

Amber - posted on 09/30/2010

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My son is 3 and was diagnosed at 26 months. What we did to get it covered by health insurance was we had our pediatrician give us a referral to a neurologist that specialized in Autism, she did all the evaluations and referred us to the correct services.
My son did the bitting thing for about a year. We ignored it he eventually stopped. It's heart breaking to watch your child doing this to himself. We contacted his teachers about it and their advice was to ignore it.

It's a long road Good Luck!

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