23 March 2010

What Should We Do With This Kid?

Obviously we love him. And he's doggone cute. But I do wish that there were a good plenty of books with actual, real, tested-in-someone-else's-kitchen (and shopping center!) advice on how to raise a mostly non-verbal autistic child.

Grant you, most run of the mill parenting magazines and books written for standard-issue child raising are stupid. I think I read a zillion of them for a little while. But really, after the first couple of "oh no, my kid is screaming" and "oh no, my kid is quiet and probably dead of SIDS; let's go check" months, you sort of know what you're doing with your children if they're pretty typical.

Usually little tiny people don't have what we term "common sense," but they learn enough of it before they get big enough to open the front door and walk out on their own. Woodjie hasn't left on his own yet, but I know that day is coming, and I don't know how to teach this idea that we don't wander off into the street or, as he did yesterday, pick up little spiders and squeal with delight.

I am only one person, but I am doing everything I can to protect him. I have asked around for a little help, but none is readily available. This post pretty well sums it up: "Now that you are not talking to (your family) anymore, where do you turn? Our days are filled with therapy appointments, learning, house cleaning, and some of us work on top of it all! We don't have time for friendships that bond and we are okay with that. Friends who previously were supportive have ditched us because they don't understand our children or our lives."

So here you are with a situation in which you're overworked, you're not sure what to do, AND you have zero support system. Hey, I love my bloggy friends, but they can't help in a pinch if I get the flu. And this sounds so, so selfish, but here it is: in "real life," I'm so busy treading water on a *good* day, that I just can't help you out and pay you back if you do me a favour today. So that right there makes me a bad friend. I swear to you that I used to be more of a *giver* than a *receiver,* but those days for the present moment are just plain over. Sorry.

If you've never lived with an autistic kid or three, maybe you don't understand. But kids who are nonverbal are not like kids who are deaf or mute. It isn't like living with Clarabell from the Howdy Doody show. True that Woodjie can nod his head "yes" and say, "No, thank you," but that doesn't mean that you can ask him questions that don't involve pictures or objects right in front of him. "Do you want pudding?" works. But more complicated ideas are impossible to communicate right now.

"Sorry, but we must wait in the doctor's office for two hours and not touch anything. I am strapping you down to the stroller so that you don't run away, because this clinic serves the prison population as well as very uninsured and sick people. Mom will freak out if you touch germy things or nibble on everything here. And after your very long wait, you will be undressed, poked and looked at by some guy you don't know. I expect you to please not scream, kick, and scream 'OWWWWW' and 'NOOOOOOO' continually and get us kicked out an hour and a half into the process. If you do this again, we will go BACK the next day and start over instead of going to Wal-Mart like we planned..." Well, ideas like that do NOT register as they are beginning to with my two-year-old. And the "he's into everything" toddler phase is magnified by about 100 with Woodjie. Rose is a cakewalk. Hard to explain. But trust me, you have no idea if you haven't been there.

So, while we're at home, I use the gate system and we're all happy for now. It's great. I'll take a bucket of toys out at a time, take little breaks and do activities upstairs, or just sit with him in his area. Things are more or less ok at home so long as I don't get distracted or do something foolish, such as actually have to go to the bathroom during his mealtime or get called away on the phone.

When I'm out at the doctor's and the like, I find I just do a lot of sh-sh-shhhh-ing and toss him quite a few little toys that can be scrubbed down later. I literally bust my guts (I had a BAD hernia situation before and it scares me when I feel my stomach muscles burning under the strain) trying to lift and carry him all the time, and my arms are tingling and my head hurting by the time I get home. It takes me two days to recover from a two-hour appointment; no kidding. And I look ahead to 15-year-old Woodjie and wonder how I can do all this when hormones kick in and he is 6 ft 2 like my other older children.

I guess this is just an "I'm feeling very overwhelmed of late" post. It's not that I'm feeling less blessed with this kid, or want to trade him in for another. Never! But I think feeling overwhelmed and misunderstood is probably common amongst parents like me, but we're so busy trying to communicate that OUR CHILDREN ARE A BLESSING that we often leave that part out when we talk with people who don't "get it."

And it's not that I'm sitting on my duff and not working on helping the Woodj-ster be as functional as possible. The big thing I'm working on with Woodjie is this idea that we want to STAY WITH MOM when we go places. I hope to teach him enough common sense that he understands that dependency. Really, once you understand that, you're beginning to understand that you are dependent on someone for a *reason.* Then you're ready to learn about some of those reasons (cars, strangers, etc.) and finally... you're ready to take some of the responsiblity for running your own life. That would be nice, for Woodjie to run his own life. I'd sure like to be able to dismantle the gate system and know that he will use the potty when he needs to go, not panic and run places he shouldn't be, that sort of thing. I would like to be able to take a shower when other people in the house are awake. Right now, my goals are pretty modest, but sometimes turning a goal into easy 1-2-3 steps is a bit above me. And they have to be easy and not one-on-one instruction-y things that I see all too often. I *do* have five other children, and some of them *do* have special needs and stuff.

I don't really have much of a peer group. I can't just get together with 20 other moms who have similar situations on a "playdate" and compare notes. I get a lot of feedback on the blog, and I *imagine* what other parents' kids are like based on what I read from their entries and comments. It's my lifeline, really. I know with these folks, I don't have to hear yet another story about weird Uncle Arthur who didn't talk until he was five because all his older brothers done kept on finishing his sentences for him, but then when he started talkin' he quoted about five of Shakespeare's sonnets, and now he is a professor of Doodledysquat at the University of Pittsburgh. Siiiigh...

8 comments:

  1. You keep treading, and I'll keep praying :)

    I don't want to be that annoying person saying, "well, have you tried THIS?" but...have you explored meetup.com at all?

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  2. lol Allison's comment just cracked me up. And I haven't even been a good bloggy friend recently. I am behind with everyone's lives, especially my own, which is what I get for being completely disorganized. Your kids are gorgeous ...& interesting. Any kid can go potty; it takes a real trooper to catch a spider. Man, am I impressed. And when you're all done raising your wonderful kids would you please write the book! The definitive book. Hang in there MrsC! ♥♥

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  3. hi,

    I haven't introduced myself but I lurk alot. We went to the Doctor with my son today, let me tell you how, My husband and I both went. I waited in the office and they waited in the car with lots of fun books and toys. When it was time to be seen I called them, we all went back, and I politely refused somethings they tried to do to my son that would have upset him (taking his temp with this beeping ear thermometer)I can understand it might be hard for people to get off work but if it's for a once a year check up, it's worth it.

    Thanks for having this awesome blog

    Lisa

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  4. (((Mrs. C))) Unfortunately, I can't offer more than a virtual hug, and my prayers! Some of our challenges are similar, and some different, but I sure understand how you feel. I wish I could go be with your kids while you go out for a few hours - no paybacks necessary!

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  5. I'm sorry I haven't even been a good bloggy friend recently with all of the chicken pox in our house. But you know that I love you and pray for you and your beautiful children everyday. I think you do an amazing job of hanging on and counting your blessings--better than just about anyone I know. I'm with Sue--I wish I could come watch the kids for you so you could have a break.

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  6. You are doing an awesome job with your kids. I know it has to be overwhelming sometimes and my prayers are with you. ((hugs))

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  7. I recently had a friend over that I hadn't seen in about 7 years. She has 2 biological children and adopted 2 children that have lots of issues. One is nonverbal. It was amazing to watch her. But with watching her I had so much more empathy for others like yourself. She told me that it can be so isolating and overwhelming, especially when she knows that one of them may live with her for the long haul.

    I am renewing my prayer time for you. hugs to you!

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  8. Big hug to you Mrs. C! You are doing a wonderful job. You really are!!! When Christian was little I would ask all the professionals (doctors, therapists, and teachers) what other families with children like Christian were doing and was deeply alarmed when they would tell me they didn't know of any kids like Christian. My kid was the most severely autistic patient they had ever had. Ouch!!! By a lot of grace and no small miracle we have made it this far. I will keep praying for you! I wish I could be of more help than that!

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