Give me a D

D is for denial.

I wonder if I’m in denial. I don’t think that I am.

But then I wonder.

I know on a practical level that Charlie is wildly behind his peers. I know that he should be sitting, pulling to a stand, and crawling at the very least. I know that with my head, but do I know it with my heart? I’m not so sure.

Charlie is one now and I think it’s time to start letting him spend more time with other children. I think it would be good for him. I’m not sure how I’d feel about the reality, though. Is it so terrible that I don’t want to watch other kids cruising about the room while mine lies helplessly on his back? Am I being melodramatic?

I’m not sure I’d mind Charlie’s lack of development so much as I’d mind the uncomfortable silence I would undoubtedly face. Perhaps I should just make a t-shirt that says, “I have C.P. Ask me about it.” Ok, I’m kidding about that last one. Mostly.

I guess what I’m trying to do here is be honest. Most of the time parenting Charlie is a complete joy. It’s not perfect, though. Like every parent, I struggle to do the right thing. It hurts sometimes to see children half his age who can do so much more than he can. Worse than that, though, is feeling that people pity me. Perhaps a better t-shirt would read, “Make Understanding, Not Pity.” Maybe I’m in denial, but I think I have a good life. Maybe I don’t get it, but I think there are worse things in life than what I’m going through.

I realize that this is a bit of a ramble. Sometimes your thoughts aren’t completely coherent.

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Comments

  1. Shannon says:

    Rambling is good…

    When D was one, she also was not sitting, etc. etc.. We joined a local playgroup for kids with special needs and it was FANTASTIC. Sure, D was behind EVERY SINGLE KID but it was great.

    Elise is behind as well, just sitting and starting to scooch a bit, and I took her to a regular playgroup and I can’t deal with all the questions. Everybody wants to know how old she is, whats wrong with her, blah, blah, blah.

    So, in short, I get it. Too bad you don’t live closer, we could get our kids together.

  2. Anonymous says:

    Although it may be tiresome to keep explaining Charlie’s condition, you’re also educating the parents & the children.

    Charlie can learn from them & they can learn from him. Hopefully Charlie will teach them empathy & compassion. The parents have a perfect opportunity to teach their children, at a young age, to accept others regardless of their limitations.

    His situation although rough is also an opportunity. And be thankful that other than his handicaps, he has no pain. The fact that you don’t have to watch your child suffer is a tremendous godsend.

    Charlie doesn’t know that he’s behind & doesn’t care. He’s a perfect little angel & deserves the same happiness as any other child.

  3. I’m not gonna lie, it’s not good times watching the other kids play around like “normal,” and then watch Ace struggle to stand. It’s downright hard. However, some of his therapists have thought that he’d try to imitate. Nothing yet. I’ll get back to you on that one.

    Still, it’s nice to get out of the house on a regular basis and interact with other parents. If nothing else, do it for that.

  4. I wonder if Charlie would try to imitate any of the other kids actions? I would be interested to find that out.

    As for Charlie getting sick of being passed around, my baby does the same thing…shoot sometimes he won’t even communicate to other adults for about 20minutes in the same room! I think that’s totally normal.

  5. Just stopped over to look at your blog (via MO Mommy). I don’t know what it’s like to have a child with special needs, but as a parent– I want Colin to be exposed to all kinds of other children. My sister went to an immersion school when she was younger and didn’t even blink when she attended school when she saw kids who were blind, wore hearing aids or used wheel chairs. As a librarian, I always encourage parents to bring their children. At the moment I’m trying to help integrate some children with autism– trying to get them comfortable with noise and activity from other children on their own terms. Anyhow… long rant… but once you initially meet the kids and parents they’ll start to really “SEE” you and your son and the details will be less important.

  6. Thanks, Kate! Maybe I’ll start small and bring him to story time at the library. Only one real problem with that–he loves being read to so much that sometimes he shrieks with delight! Not very library friendly.

    I’ve known other parents like you and I just adore them. I’ve also heard mother whining at the playground when they discover it’s “Special Needs Day.” Oh, the horror! Dont’ worry, disability isn’t contagious.

  7. I don’t know about your library– but our storytimes are controlled chaos. Kids learn by shrieking and moving around. I giggle at librarians that think they can make kids sit still. As if!

  8. My son is 3 now and I stuck it out with my mum’s group until he was 2. I gotta say, watching other kids was never too much drama for me. I was actually quite fascinated watching the way kids are SUPPOSED to crawl/pull to stand/walk etc. It was pretty educational for me as a first time mum who had no real idea what we were aiming for. And I think it was kinda motivating for my son.

    The reason I stopped going wasn’t because of the kids, but because of the MUMS. And it wasn’t about them asking too many questions about my son. In fact, it was quite the opposite. They just weren’t much interested. I got sick of being left out of conversations. So much of what was being discussed about the kids just had no relevance to me. The day the conversation moved from stopping kids from running away from you at the shops to whether or not to let kids climb in and out of their car seats on their own I decided I wasn’t going back.

    Having said all that, I think it said a lot more about the group itself than anything else (I got unlucky). I’ve since found a couple of different playgroups we attend which are supportive and great fun for us all. My son uses a kaye walker and I love that this is totally normal for the kids who are around him often.

    I say go for it!

  9. Tiffany says:

    I agree with Kate… Take him to the library! If it’s anything like our library they get loud during the kids story time. Of course they have their own little wing in the library… but it’s good for the kids. And, they shouldn’t expect those little kids to be quiet during that time! You will love it!

    Hugs – Tiff

  10. Nadine Hightower says:

    I think interaction with other babies would be good. What about that playground you mentioned before??

  11. Elizabeth says:

    I was planning on saying something sage and all that and everyone else beat me to it. 😉

  12. What ever happened to your idea of starting a group for kids with special needs? Although even with that, I would think it would still be good for Charlie to be around other kids. But I’m no expert!

    I see what you are saying and it’s hard so it’s totally understandable that you feel like that. Wish I could be more help but I can just say hang in there, and kids and people will love Charlie for who he is, not focus on what he can’t do yet. Of course you’ll always run into jerky people, but you just have to learn to ignore them I guess!

  13. Katy,

    As hard as it is for you, you have to get out there. It is good for you, and good for Charlie. He is a growing boy, even if he isn’t going at the same speed as every other child. So what? He needs the interaction and so do you. It will help him as he learns and grows and it will help other children to learn to interact with children who might have needs that are different from theirs. Charlie might make a whole new circle of friends, and so could you!

    ~Hugs,
    Becca

  14. Anonymous says:

    Please go to my blog and look at my latest entry.

    Billy Paul
    http://quadius.spaces.live.com/blog/cns!745D1B2B2E20FAE1!3578.entry

  15. Anonymous says:

    Do me a favor and let me know what you think about the show.
    Ask any questions you have, as it will give me more material to write about it and that has been a problem around my neck of the woods.
    Billy Paul
    http://spaces.msn.com/quadius/
    PS I sincerely hope Charlie’s doing well. I’m going to be coming by here later on this evening or tomorrow to check on his progress. :-)

  16. Barbara says:

    I don’t have any advice or suggestions but just wanted to say that I’m at the same point as you right now. I just need to figure some things out and then motivate myself to go. I think it does them a lot of good to be around other kids. However, like you I don’t want pity and like another commenter mentioned, I don’t want to be left out of conversations. Now I’m rambling!

    Anyway, great post!