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It’s “official” I am not crazy….

Well I still  probably have some crazy tendencies 🙂 ….but no one can tell me that I have ANY delusions when it comes to what is affecting my son.

We saw the neuropsych yesterday.

The neuropsych that told me, a year ago, that she really didn’t think that D was on the spectrum.

The neuropsych who, about a month ago, finally LISTENED to what I had to say and READ what I brought from our care team.

Her assessment was different this time, more attentive and very thorough.

 We waited about 30 minutes  for her to compile all of her numbers into a computer program,once this was complete she looked at me and said, “well this shows what you knew before I did…Diego has an Autism Spectrum Disorder.”

She said that the discrepancy between his academic functioning and his social/emotional functioning was huge, and that she can’t believe that she missed it.  The ADOS picked it up and it also helped that his teacher accurately filled out her form.  As we discussed various things I found that the  neuropsych backtracked quite a bit, and I kind of felt bad for her. 

Kind of.

She told me that I was getting Diego a majority of the services that he needed and that there wasn’t much that she could reccomend.  She also said that I should “pat myself on the back”  because I kept pushing for therapies despite the lack of a neuropsych diagnosis and that she was “very happy” that I followed up with her.  She also mentioned that watching Diego’s brain work really fascinated her. 

So here we are.

We finally have a diagnosis from a neuropsych.

I really didn’t think it would affect me much and I am surprised at how much it has.  I think that since I didn’t have the official diagnosis from standarized testing that it allowed me to have this silly little window of doubt. 

You know, that maybe (at 3am when I was up thinking about things) Diego wasn’t really on the spectrum. I knew he was, but denial can run deep and hide in tiny crevices. 

So a bit of a reality check finds me sad today.

On the positive side of this , the neuropsych eval will help me get D autism services in the public school system next year and the Regional Center will not be able to screen us out.  D also has his MRI next Tuesday to rule out Agenesis of the Corpus Callosum, they are putting him under general anesthesia, and I’m pretty nervous about that. 

As far as school goes, Diego is doing a little bit better, although at his OT appointment on Tuesday his OT said she ahs never seen him so out of sorts. She gave me some ideas for home and I will find out if they work in the coming weeks.  He was out of school on Tuesday and Wednesday for his various appointments, so tonight should be interesting. 

It has been one hell of a week and just when I think there is a “break” on the horizon, there isn’t.  I’m not sure there will ever be, some days may be easier than others, but this is my “normal”…..and all I can do is work on accepting it 🙂

*pic credit http://images2.layoutsparks.com/1/137740/crazy-turtle-cartoon-comic.gif *

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About sonidoinquieto

I hate writing bios *bio pending*

9 responses »

  1. Love the picture!
    Well done for your persistance it will hold you in good stead for the future.
    Hope all goes well with the GA.

    Reply
  2. It’s always bittersweet, isn’t it, when we have our gut suspicions confirmed. But,why do you have to wait until NEXT school year to get autism support services through school? This latest finding should trigger an IEP team meeting to discuss the eval and to review whether D is getting the right supports. If you feel he is not, or the neuropsych has suggestions, bring them up now. Don’t wait!

    Reply
    • I kept D in private school for kindergarten and the district put everything on consult. But I am going to email the school psych with the results of the new eval, this way he has an idea of what he is facing come July of next year 🙂

      Reply
  3. You did what you needed to do for your boy. You never gave up on getting the doctor to listen in order to get him the support he needs. Well done, Mama. But the double edged ‘victory’? I feel ya, love. Down deep. xo

    Reply
  4. therocchronicles

    I get it, I felt the same way. I worked for months to get into doctors and even created a document listing all of his “quirks” and still felt like I was slugged in the gut when he confirmed what I already knew. It was easy to doubt myself when things were good, or late at night, but I always knew the truth. I’m glad she validated you, and was able to express that she didn’t catch it when she should have. Many doctors will try to cover that up. You are doing a great job, you are strong, and you can keep going! Hugs.

    Reply
  5. Shivon, by the time my second son was officially diagnosed, it had been 5 months since his regression, and even though we took him to my other son’s neuro ped, almost half a year had rolled by before he could be seen. I had already accepted he had the disorder, had watched him begin the uphill climb of progress, thought I was in a good place with everything. Then I heard “the word”, for the second time mind you, and I still felt incredibly sad that it was “true”. I really get it! I am SO happy you will get better services now. Having a professional back you up is critical.

    Reply
  6. Oh shivmo, think of how short the time has actually been! I got a phone call from a mom today who’s student attends my school. She wanted to have her son come to our program two days a week. Unfortunately I have to waitlist all new applicants, and he would need to attend more than two days to even be eligible to stay in the program. She was also expecting that we would have an aide for her son, but I had to let her know that we don’t have the $$$ to provide that kind of support. She said none of that would work for her son because of his high rigidity, plus she’s trying to test different meds cuz the one’s they have him on are not really effective..w…I suggested some other options and sent her some links, but her son is a middle schooler and all of it was rather new to her! I couldn’t imagine if D had to wait THAT LONG to start getting the kind of attention and support that would help him be most successful. You are ahead of the game my lovely sister…..this is a victory- celebrate =)

    Reply
  7. Hey Shivon…ditto…give yourself a break.

    Neuropsych evals are so important and what that does is lend credence to everything else you’ll do for Diego.

    As our boys are twins…I can’t wait to find out how he’s doing with the med changes etc….

    And, don’t give up. Acknowledge the wonderful mind you have created.

    Reply
  8. anyone who thought you were crazy is, well, crazy themselves.

    No matter how convinced you are of the diagnosis, seeing it on paper is never easy. Give yourself a break and know that’s it ok to be sad about it.

    You are such an impressive mom, and you’ve gone to great lengths to get what your son needed, even before a doctor said it was so. Hopefully now you’ll be able to do less fighting and more enjoying of life together.

    wishing you all the best for the weekend.
    alysia

    Reply

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