Thursday, June 23, 2011

Autism blogs (have got me thinking....)

Months ago, I came across a wonderful blog called Diary of a Mom written by a mom of 2 daughters, one with autism & one developing typically. And from there I have found my way to a whole network of blogs written by parents of children with ASD.

Lately, I have taken a lot of time & sat & read these blogs. As I read the stories I'm filled with so much hope, yet also jealously & guilt. I read some & I'm jealous that that's where their child is on their journey & that Addy is not there yet. And then I read some & I feel guilty that Addy is doing so well & their child is older than Addy but not where she is.

But I am so proud of my sweet girl & I love her just the way she is.The fact that she has some social issues & limited speech does not change how much I love her.

But sometimes I get sad. It's hard for me to accept that my child may not (& probably won't) have the same childhood that I did. & I wonder a lot what she is going to be like as a teenager. Will she ever go to sleepovers at a girlfriend's house. Will she ever be gone for hours with the neighborhood kids exploring. Will she ever spend hours on the phone talking to friends. Will she ever go on dates or to school dances. What will it be like at school for her? Will she connect with the other kids or will they be mean to her? Please God don't let her be bullied. I worry about all this because SOCIAL & speech are where she is delayed the most.

It's tough to be the parent of a child with ASD.  I pray a lot for her. That God watches over her & helps her "catch up". And I worry a lot too. I worry that I spend too much time focusing on her & don't give Alex enough attention. And then when I read some of these other blogs I worry that I don't spend enough time on her. She only receives speech & OT once a week & some of these other children are getting 15+ hours of therapy a week. If we had her in more therapy would she be talking more? What if we could afford a private school for ASD children.Would that make all the difference? Would she be 100% potty trained? Would she be doing better socially.  There are so many what ifs.

When I look at Addy I don't see ASD. I don't see PDD-NOS. I just see my beautiful perfect child. I know that she does have delays but to me they are not severe. And they make her who she is. Is that a problem? I don't know. When we get reports or go to the doctor, I cringe inside. Because like I said, I don't see her delays as severe. But that nasty little "s" word often pops up on her reports. And then I think that it's my fault because if I saw her delays as severe, then I would do more to help her. And then I'm torn, because I love her just the way she is & don't want to change her.

When we moved to Sienna, I set up an ABA evaluation for Addy. She cried through the whole thing & I hated it. It seemed too rigid & demanding for my sweet little girl & I couldn't sit through that just letting her cry. So I said, thanks, but no thanks, we won't be doing ABA. I just didn't think that Addy needed therapy that structured. So I opted to go with the Floortime approach. But was that the right decision? What if we would have done the ABA? Where would Addy be now on her journey? Further along? At the same place? More delayed than she is now? There's no way to know. All I can do is to do what I feel is right for her. And if something is not working, change it.

My favorite autism blog that I've read so far is Adventures in Asperger's. (You should really check this blog out, it's FANTASTIC & funny & cute.) It's written by a dad (nice to see a dad's point of view) with an ASD son. I love his take on life with autism. I find myself reading & saying "oh yeah, we've been through that!" Especially the food issues!

So here's my take on autism... Mostly, I try not to get down about it & say "Why me" or "Why Addy?" But I'm human & a mom so every now & then I do. Every now & then I get sad & worried & PISSED! Even though PDD-NOS does not define Addy, it is definitely a part of her. And a big part, at that! And if Addy did not have PDD-NOS, she wouldn't be who she is. So instead of feeling sad & depressed about it, I welcome autism into my life, BRING IT!

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