So the doctor gave us the results in the feedback session and he said that Cooper does not have Autism. Now, that sounds good right? Well I don't know if he is right so now I feel like we are back to square one:( I am just SO frustrated!!! I have heard from a number of people that they ended up having to go to 2 or 3 different doctors to finally get a diagnosis so I know that this is not unusual but it is a pain!
The doctor told me that I scored him as having mild to moderate Autism based on the questionnaire I filled out but that their testing showed that he is fine. He told me "he does not have a problem with speech and he is in the range he should be for IQ so he can't have Autism." Huh??? Ever hear of Einstein???? He did admit to me that they test in a room that is lit well for Cooper, it is quiet and he is working with someone who knows how to work with him so the results are not entirely accurate. What???
I am just SO frustrated because I don't see how an hour and a half of testing can overrule his LIFE! AAGHHH!! The doctor told me that Cooper just has "very severe SPD," again I disagree. He does have SPD (duh) but it is not severe more moderate I think.
So, what we are doing now is going to a DAN! (Defeat Autism Now!) doctor and we are getting a second opinion from a Developmental Pediatrician that has come recommended from the DAN! doctor. I will say I don't know if Cooper does have Autism but I do know that it is not just the SPD. Some of the things he does are common Autism symptoms that have nothing to do with SPD.
The DAN! doctor I think is a good idea even if Cooper does not test from the other doctor as having Autism. This doctor is going to do blood work to see if there are vitamins and minerals that Cooper is deficient in. He is very likely to be deficient because he has such a strong self limiting diet. this doctor will work with us to test Cooper and then see what kind of supplements he needs to be on to regulate.
I talked with the DAN! doctor on Tuesday and she was SO helpful! She was so great I just can't say enough about it (I hope I still really like her when I meet her!). I talked with her on the phone for 45 minutes! Like I told my husband any doctor that is willing to talk me on the phone without Cooper being her patient or any guarantee that he will be her patient is a doctor that we need to bring him to! She also was at home! She forwards her business calls to her cell when she is not in the office. I have a meeting with her next Thursday to go over Cooper's history and then I will make an appointment to meet with her with Cooper.
I also am about to call and make the appointments for the developmental ped -it is a series of three appointments. The fact that this doctor is actually going to meet with Cooper and more than once makes me think this may go a little better already! The other doctor never even met Cooper!
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I will tell you that most of how you describe Cooper is almost exactly the same as Braden. We are evaluating him for Mild Asperger's syndrome. It's at the end of the Autism spectrum and characteristics are very very good language skills - in fact they talk like "little professors", they hate change of any type: shoes, schools, foods, teachers; and are usually a bit delayed with fine/gross motor skills. They are very very smart usually, but kind of awkward socially. They also have trouble with pretend play, although Braden has made leaps and bounds with that. Google Aspergers. It's ASD at the far end, and is not quote AUTISM in it's severe form, but it on the Spectrum. It does involve sensory disorders and OCD. Braden is severly OCD and Ritualistic. And he cannot have anything in his life change, or he freaks out. We've bought the same pair of shoes 3 times in different sizes. Maybe it's just full blown Autism they were looking for.
ReplyDeleteWill keep you in prayer. We're still in diagnosis stage. They observed him at school, they observed him at the clinic, and both his teachers and us had to fill out a diagnostic cheklist that was about 3-4 pages of questions.
The thing I worry about, is they never see him "mad" or in a fit over something that has changed. That's his biggist thing and what causes us the most problem at home. And to a normal person he just looks shy - but I see it as severely impaired in NEW social settings. With familiar people he seems fine, but we also have learned to communicate with Q & A, prompting, and echoing his words - or him echoing us.
With someone not familiar with ASD kids, they don't really know how to talk to him, and thus he is withdrawn. But with the therapists, they can usually get him to talk, because they know how to quiz him, or get him talking about what he likes. So I worry they don't see how impaired he truly is socially because of HOW experienced they are in talking to ASD kids. Naturally Braden does better with them!