The Worry Mom

The Summer Camp registration deadlines are completely designed to send someone like me over the edge — someone who continually and irrationally worries about things that may or may not come to pass, driving her husband crazy with her ability to work herself (and him) into a tizzy based on very little information — but a lot of precedent.

The word around town is that if I want to get one or both boys involved in a summer camp, the time to act is now. My ability to do this is complicated by not knowing if either will qualify for ESY services until their May and June IEP meetings. You’d be surprised to hear that I’d rather pull out my toenails than pick up the phone and just ask (see above). But I did, at last, because who is their #1 advocate? And my husband begged me, and because — my god, why shouldn’t I be able to do that. The general consensus is that John will most likely get ESY but that Sam may not. (ESY being granted only “if skills acquired during the school year could be lost during the break”).

There is a whole other tangent I could go off on here — how there’s a listserve for parents of kids with special needs in our county and how I hear — daily — about the angst that others are going through RIGHT NOW with respect to services for those kids. Sometimes I feel like I’m biding my time in line, waiting for the school district to come right up to me and say “Your turn! Screw you and your special needs kids. No, you cannot ask for ABA (or speech or what-have-you). We are out to get you.” But I’ll save this tangent for another post.

So ESY is just four weeks during the month of July. We are flanked on either side by three vast and vacant weeks with No Order. No Structure. No Routine. While that is manageable for Sam, it is unprecedented for John and has kicked the Worry Mom into high gear. Do we want to see him stop singing the Backyardigans song? Do we want him to build on the latest flurry of words yelled out: ball, snowman, foot? How can I live without the amazing eye contact, still fleeting but so beautiful?

I’ve now logged dozens of phone calls to different speech and language camps, OT camps and sensory integration programs. I am shocked to learn that most require a hefty screening fee just to meet us whether they accept us or not. I am discouraged to learn that there doesn’t seem to be a camp suitable for where John falls on the spectrum — all require a certain verbal ability that he has not mastered yet. So it looks like we are going to set up another home ABA program to fill in the gaps while Sam goes to a camp in the mornings.

I’d start worrying about how we’ll pay for all this, but this Worry Mom knows when to shut down for awhile.

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  • Argh. Summer camp. I’m trying to avoid that topic. So expensive, but three kids all day all summer? Yargh. I’m about 99 percent sure Jack wouldn’t qualify for ESY, so we’ll be on our own. I’m thinking lots of time in the wading pool. We’ll invite you over.

  • Worry is something I do VERY well! My husband dropped a bomb on me yesterday. If my two guys get diagnosed with Autism, our insurance will cover NOTHING for it. I have to look into this further because there is a law in our state that if our policy covers neurological disorders, then they must cover autism related dr. visits, therapy, etc. As much as the policy allows anyways. Which isn’t much, but it’s something! I almost started crying and my heart sank into my gut. Sometimes it feels that the whole world is against you. But that just makes me want to fight harder to get the best for my boys!

  • I’m worrying about the summer, too. L. won’t go to camp–refuses to (too much social anxiety), but all that unscheduled summer time is difficult for him–and for us.

  • Just followed your comment on my blog (Hyperlexicon) to yours!

    I’m so glad I found you. Your boys are so beautiful! Thanks for sharing your story.

    Good luck with navigating the summer. We’re hoping our summer is easier than the last one. The different routine combined with some developmental speed bumps seemed to make everything more difficult.

    I look forward to following you!

    Christa

  • oh, i know that worry mom!

    i’ve just begun to think about summer and realize, i’m late already.

    a home program may be the perfect thing for this summer to fill those wide open slots. maybe someone can help you with it? so you can have some time for you? and maybe some other wonderful thing will drop from the sky between now and then.

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