20 May 2011

A Post in Which I Whine a Little.

Let's face it. One of the really hard things about having a special needs child is this thought that he will never have a normal life.

Oh, we have great kids. Yeahh, we would never trade them in for the whole world and blah blah blah. Think parents of standard issue children would look at our "giftings" and go, wish I coulda had some of THAT in my life and I would sure trade my kid in? HELLO, the "I wouldn't trade my kid for anything" issue only comes up when we have a problem going on. No one else has to even feel the need to justify that they love their children as they are.

These parents can drop their children off at a friend's house and LEAVE. Oh, nevermind that. Their children HAVE friends who invite them over, how about we start there?

Not trying to grouse here. Just being real with you: it's not fun. "Love my children/ cherish them as they are" does not equal "fun and glad things are the way they are." My kids are missing out on a lot of things.

Woodjie pooped maybe twice in the toilet. He's nearly five. Don't think I'm doing the happy hoedown every time I have to wipe up crap and celebrating how "awe-tism is awe-some." And he's climbing the walls and throwing toys around before I can even bag up his poop, put the laundry in and wash my hands. Ok? And sometime soon the other kids are going to start making his life miserable when he poops in class. Barring a miracle, he'll never go to regular school. Never sit in a waiting-type restaurant. Never have a best friend who personally invites him over. Never play in the school band.

It's not fair! It really isn't. Yes, I'm in the neurodiversity bandwagon club thing, but that doesn't mean I'm all happy about how great my kid has it. I wish he could do all those fun things. So when I read stories like this, I understand where the mom is coming from.

Sure, band auditions cull out those kids who aren't talented/don't bother to practice. Go do something else if you're no good at it.

But I feel sometimes kids like mine get culled out of everything. Even the autism therapy groups often specify Asperger's only. Yeah, thanks for that...

6 comments:

  1. To me being on the neurodiversity bandwagon doesn't have anything to do with being all happy about my child having atypical brain development anymore than a parent of a child in a wheelchair is happy that their child is in a wheelchair... it is about encouraging society to (1) make reasonable accommodations (like curb cut-outs, elevators and wider toilet stalls for a person in a wheelchair) to include others (2) accepting some of the non-violent, non-threatening oddness.

    It seems a lot of people I know who are not neuro typical can succeed in familiar settings, with peer/community mentors, etc. When I discuss neuroacceptance, it is because I want to open a dialogue about what can be done for our kids. I guess I am really thinking in a utopian, rights-based belief that people have the right not to be marginalized.

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  2. I understand. I remind myself that my daughter doesn't know what she is missing out on when her brother gets invited out with his friends. I think it is more me grieving over her childhood and all the things that I enjoyed. She will most likely never do them.

    Who wants to have the responsibilty of an 8 year in diapers other than the mom! Not that mom feels guilty because she could use a sanity break :0)))

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  3. I am sorry. Truly sorry that this is a very real ache in your heart. While we have had to let go of a lot of the dreams and expectations we had for our daughter over the last few year, she has friends. They think she's a little goofy and high strung, but they are also *protective* of her because they do now know she has some issues that just can't be helped. They would never tease or make fun of her because they have seen her moments of fear and anxiety, they see that she is her own worst enemy a lot of times....and that she doesn't need anyone else's help in that department.

    We aren't sure how long this will last....face it, the tween/teen years are right around the corner and her maturity is already behind her peers. She can't sleep over anywhere because of her behaviours/tics and sleepwalking issues. Her friends will most likely move on to other social circles, which understandable. Sad, but understandable.

    I honestly don't know how you stand it day after day. YES, you love those babies and YES, you wouldn't trade them for the world, but it's got to be down right depressing day in and day out. I hope that someday when you stand before our God, that he has some amazing reward for you for taking such amazing care of his precious littles that he blessed you with. And I hope that in that Heaven, Woodjie will meet you there when it's time, and clearly say to you, 'Mom, you couldn't have done any better if you tried. Thank you for never giving up on me.' Who knows? You might just hear that from him here in this life...

    Hang in there, my friend. I love you and I'm sorry you're struggling. It's not fair.

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  4. I think you need to look into this issue with the therapy groups being selective.
    Why the specific Aspergers only? Are there similar groups that take only autistic kids that don't also have aspergers?
    Do the kids need different types of therapy that would necessitate this division?
    @Julie; I'd like to see wider toilet stalls everywhere!!
    In some shopping centres here in Aus. it's ridiculous how we have to squeeze ourselves in between the toilet and the wall just so that we can close/open the door. Turn around to sit down or flush and you find yourself crashing against the roll dispenser or the sanitary disposal bin.

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  5. I know that my problems are not your problems, but I do understand on some level the grief of knowing that your kid may never get to do all of the "normal" stuff kids do. It's heart breaking. For me it comes with a whole layer of trying not to be angry with his birthmother for all the cocaine she freebased while pregnant and all the alcohol she drank--just in case it was that which made him the way he is. It sucks.

    I just wanted to say that I hope you find some encouragement from your many OL friends. We all love you and support you. You have some amazing friends who know your pain. You are always in my thoughts and prayers!

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  6. I'm with you friend. I know just what you are saying. (((hug)))

    On a positive note, I will share some good news with you, because I so understand the whole poop issue. Nutkin now poops on the toilet! He's made only one mistake in the past month or so. There really is no obvious reason why he suddenly became able to do it. I believe that he was just finally ready. He's 8 years old. I had truly begun to prepare my heart and mind for the possibility that he would never be able to do it. Now, peeing is another story, but I feel a little better able to wait for the right timing for him on that one now. Woodjie's day will come, too, on his own time table.

    You are always in my prayers. I know that there is a jewel studded crown waiting for you in heaven, my friend. XO

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