Wednesday, October 25, 2017

One key way to help your child: Put it out into the universe


"Hi! Can I talk with you?" asked the friendly-looking woman standing with a dog at the end of my driveway.

I'd just pulled our minivan in, and was about to lift Ben out of his car seat. I peered at her. "Do I know you?" I asked.

"I'm your neighbor!" she said, and instantly I realized she was a newbie I'd been introduced to a few weeks back; we'd connected on Facebook. She'd been reading this blog, and had seen the post about my stalking a local group home for adults with disabilities and wondering about what the future held for Max.

Turns out she had a relative with autism who was living in a group home just down the street. Yes, literally just down the street. She explained how parents had pooled resources, hired someone to run the home and started it not long ago. She described the house to me, and offered to put me in touch with the wonderful person running it.

I was grateful, once again, for the options that have been coming my way this last week. After I posted, several Facebook friends shared resources and housing possibilities. I still don't have answers, of course, but I am much more reassured and heartened.

I've always been a pretty resourceful person, thanks to a dad who taught me to DIY everything from looking up info in encyclopedias to fixing a broken cabinet. (One of my most prized possessions is a  brass hammer he got me, with screwdrivers on one end that twist into place.) That resourcefulness kicked into high gear after I had Max, and it's never stopped. The more I ask around about stuff, the more it benefits him. I'm glad to have the blog for that, but I do it with local mom groups and organizations I'm part of, too.

When it comes to raising a child with disabilities, that old phrase "It never hurts to ask" becomes "It always pays to ask."

Ask your child's doctor to send you more information on an issue you two discussed. Ask therapists for suggestions for enabling gadgets for your child. Ask the teacher for extra worksheets that will help your child learn. Ask the school's computer pro for apps and websites that will help your child. Ask a supervisor at the insurance company to address your issues if Jane Shmo rep isn't helping. Ask other parents which treatments have helped their children, which doctors they use, which alternative treatments they've tried. Ask people who run local activities to include your child. Email the expert, author, organization staffer or world-renowned doctor your question or request. Message a stranger on Facebook who also has a child with disabilities, like a mom from Slovenia did the other day when she saw a YouTube video about Max getting stem cell therapy.

If there's one thing I've learned in fourteen years of parenting Max, it's ask, ask, ask, ask, ask. Don't be shy, and don't worry about being pushy. Do it for your child's sake and yours, too—you never know what will come back to you when you toss your questions and concerns out into the universe. You are clearing a path for your child in a world with far too many roadblocks.

8 comments:

  1. Yeah, for family members who teach us to DIY everything.

    And wasn't it cool about the Slovenian who learnt about stem cell therapy?

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  2. I couldn't agree more! If you don't ask, you will never know what may be. I have learned that with my son too - and many a good thing has happened. ALWAYS ASK!

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  3. Thank you for posting this. Always good info.

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  4. Not to be a broken record, but also ask your state legislators, and your Representatives and Senators in Congress ... especially if there's something substantial you wish were available, or that is available but should be better.

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  5. And, when I get upset about all the ugliness on the internet and how it shows the dark sides of humanity, I read something like this. I know there's a reason why I always leave your blog with my heart lifted a little bit and why I'm always al ittle sad when there's no post for the day.

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  6. Yes! I love so much of this post. I'm a part of several mom groups, and we just moved across the country, and asking has been able to make this move and transition so much smoother!

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  7. This is exactly what I needed to read today. Thank you 💖

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Thanks for sharing!