Feeling confused!

This week our doctor shared the re-evaluations of our son.  Apparently E no longer falls on the autism spectrum.  He is close, but not officially “on”.  The doctor isn’t officially taking away his diagnosis.  They are going to re-evaluate again later this year. 

It took me three years to say he was and now he is not?   I have always said that E is a confusing case.  I remember a group of doctors all looking confused at a meeting in Iowa City.  He isn’t typical.  I have also seen a lot of growth in my baby over his lifetime. 

He is much more tolerant of sensory issues now that previously would have driven him into a melt down.   He looks at people when he speaks to them.  He has some absolutely wonderful relationships!  He is improving in his physical therapy and now only goes once a month.  He hyper-focuses on things less often.  (Meaning:  Before he would start talking about Pokemon and continue it for HOURS!  Now he is able to change the topic sooner.) 

I’m still confused though with how you suddenly aren’t on the autism spectrum any more.  To me he still has many of the same challenges that he had, and although I see improvement… I don’t know…

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3 thoughts on “Feeling confused!

  1. I just had a conference this afternoon with a couple whose twin sons were diagnosed autistic and now aren’t. We are watching one because he is having some issues again; however, his borhter isn’t. They started out in special day class and now are not only mainstreamed but removed from most special services.

    I chalk a lot of this up to BRILLIANT and VERY INVOLVED parenting (their parents are pretty amazing and supportive people). I have to say that I think Jenny McCarthy is onto something by being vocal about early intervention, making people see that autism is more than what you see in Rain Man, and showing that patience and love make a huge difference in a child (not to mention demanding the right services).

    I seriously think with active, involved parents like you, we’re going to start seeing huge changes in what it really means to be autistic — scope, scale, severity, etc.. I think that the doctors should be talking with you about what you’ve done and read, and how you’ve educated educators on this issue. The parents are on the front line making huge gains. The rest of us need the road map (yes, I know, it’s not easy being a cartographer).

    How weird, scary, exciting and, as you say, confusing all at once. I wish you both well as you navigate this. And, strangely enough, congratulations on a job well done. You, Todd, Noah, and Ian have come together in a way which has made huge benefits in each others’ lives.

    In this way, you are blessed.

  2. I totally agree with Suzanne. You and your husband have invested a lot in your son to make sure he would have the best life possible despite the circumstances. That is commendable! Truly, love does conquer all things–both great and small!

    I saw a movie on the Disney Channel featuring Zac Ephron starring as a teen with autism. With the love of mom and later stepdad, he was able to live a “normal” life and baffle doctors with his achievements. I believe it was based on a true story.

    Your awesome parenting is evident through your posts.

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