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Wednesday, April 14, 2010

i'm back, and i have news

So sorry about the complete absence of blogging over the past couple of weeks.  There's a couple of reasons - firstly, I was spending lots of lovely time with my children, secondly, I've been deliberately trying to break my very bad internet-all-the-time habit, and thirdly, I wanted to wait until I could share this news.  It's been consuming most of my waking thoughts lately, and a few of my sleeping ones as well.  But now, finally, we have...a...DIAGNOSIS!!!!!!!!

The Bear has been diagnosed with PDD-NOS (Pervasive Developmental Disorder - Not otherwise specified), which is an Austism Spectrum Disorder.  Essentially, it's mild autism.  Dr Wonderful, the paediatrician, was full of hope and support and encouragement.  The Bear is now eligible for some excellent services (and the funding to go with them), and we have every hope that his symptoms will improve.  He had a lovely time in Dr Wonderful's surgery yesterday, checking that all those pesky cupboard doors were working (they were), and that the taps were gushing water consistently (they were), and that the wheels on the cars were turning as they should (they were).  He was somewhat concerned, though, that the Little People Bus wouldn't sing its oh-so-irritating song like ours at home does (note to self - lose batteries or lose mind), but when he discovered that Dr Wonderful's computer clearly needed servicing by the Bear, he was happy again.  By the way, I'm quite pleased that he wasn't the child who wiped all of the good Dr's case notes by pressing buttons...there but for the grace of God...

He gave the Dr a beautiful high-5 on the way out, and made lovely eye-contact with him, which was great to see.

So how do I feel?  I'm not sure, actually.

We were expecting this diagnosis, so I'm not shocked.  It's still a big adjustment, though, and I think it'll take time to sink in.  For the moment, I am so completely overwhelmed by the paperwork involved that I can't really think of anything else.

Oh, by the way, we asked about the initial thoughts that the Bear had verbal dyspraxia - highly unlikely.  Apparently dyspraxic children have normal receptive speech, whereas Bear's is delayed.  Also, his stimming has been increasing, which is a trait of ASD rather than dyspraxia.  It's academic, really, as he'll need the same, if not more, therapy anyway.

One more thing - I'm very new to all of this, so if you are ahead of me on this pathway, feel free to let me know if you think I might have misunderstood anything the Paediatrician or therapists have said.

Over and out!

5 comments:

  1. I work with two boys that have autism. They get a lot of services from the government, funding and such. Minnesota gives them funding to hire house cleaners because they realize that parents who are dealing with these kids don't have much time to clean. We've noticed that structure helps a LOT! I can give you the main idea of the "programs" that we do to keep them busy and help them make choices. My email is eurekaexposed@hotmail.com

    I don't know much about autism, but I can tell you how we do things :) I'm really happy that you finally have a diagnosis and now you can focus on how to help.

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  2. I bet its both a relief to have a diagnosis as well as hard. And yes I think they are right with the verbal apraxia, because Lucas's receptive speech is right where it should be for his age. Its the expressive language he is very far behind on for his age. I'm sorry to hear about the diagnosis, as I know its hard to hear and take in as a parent, but I am glad he will be getting the therapy & services that he needs to help him. Know I am out here supporting your family and that he will always be your Bear, no matter what label he is given by therapists & pediatricians. You are being such a good mama getting him all he needs.

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  3. There is seriously something to be said for knowing at least - a relief that comes when your questions are answered and you can formulate a game plan.

    I am so glad you at least have answers!

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  4. Big Hugs to you and your family! I know a diagnosis is a double-edged sword. First you think, "See! I told you I wasn't crazy!!" then you cry your eyes out at the uncertainty that a diagnosis brings. But I know you guys will be fine! You are right... a diagnosis brings services. That is the most important!

    Welcome to the "I have a child on the Spectrum" club! I promise its not so bad here :)

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  5. I saw your comment on my blog, so I came to check yours out, too. I totally understand the range of emotions that comes with a diagnosis. The relief, the sadness, feeling overwhelmed... My younger son was originally diagnosed PDD-NOS, and when he got older the diagnosis changed to Aspergers. It's been nearly 2 years, and I'm still trying to figure out how to get financial help and dealing with our school district. Everyone thought I was being dramatic thinking my kids had autism, but I knew. A mom always knows.

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