Selfishly, it's really good to know that I'm not alone in my struggles and my wishes. It's such an isolating journey.
And my mothering heart absolutely broke and I fell into sobs reading the reader responses. There is so much pain and suffering out there. So much of it stems from that very isolation.
As parents we are isolated from family and friends who, at best, don't understand our children, and at worst, belittle, criticize, ostracize, or judge us or our children. We lose the friends we have. We have no energy or space to develop new friendships, especially with those who understand our children and won't get mad if we have to cancel or rearrange a play date at the last minute because a meltdown over socks prevented us from getting out the door and caused uncontrollable sobs for the next hour and a half.
As parents we are isolated from the care we desperately seek for our children from "experts" and "professionals" who disregard our insights about our own children, and whose ignorance and disbelief about our children's conditions makes us question our own sanity.
As parents, we watch our children desperately seek friendships but unable to forge them.
Friendless, isolated, alone. That is our journey.
And because it is difficult for many of us to "be" in society with our kids much of our emotional support comes from others via the internet. I'm thankful to be living in this time with access to that support or surely I would have shriveled up long ago.
So as the author intended, this wish list helps us laugh and commiserate together.
By the way, my husband excels at #4 and #9 plus doing all the cooking and grocery shopping! Thank you!
A Special-Needs Mother's Day Wish List, By Terri Mauro
I know you're trying to figure out a Mother's Day present for me (and if you aren't, take this as a big, fat hint).
Jewelry is a lovely thought, but not exactly practical, given that our child might steal, break, perseverate on, or require us to hock anything nice to pay for medical expenses. Candy is always appreciated, but since I've just consumed all the children's Easter sweets to save them from obesity, diabetes, and allergens, I'm not really in the mood. Instead, honey, why not pick one of these gifts I'd really love. They may take a little more effort than something in the Hallmark aisle, but they'll make a big difference to me.
1. You know that material I've been asking you to read about our child's disabilities, that stack about 500 pages high? Read it. Now. Really.
2. Do some research of your own for a change and bring me something I haven't seen before. Then explain it to me.
3. Find the home number of every specialist and educator who ever dissed me and make some really good prank phone calls.
4. Offer to stand guard duty at the bathroom door while I take a nice, long, hot bath, free of constant cries of "Moooooooooooooom."
5. Buy some sturdy boxes for storing all the children's school papers, and then believe me when I say I have to save everything they've ever done for possible documentation of learning progress.
6. Buy some sturdy notebooks for storing all the children's specialist reports, and then organize them for me so I can always find the exact one I want in a snap.
7. Sit down with me for one hour to discuss decisions we have to make about our child's behavior, treatment, schooling, and/or future. No TV watching, newspaper reading, or dozing allowed.
8. Next time you're tempted to make some crack about a neighbor or a teacher or a family member that you just know our child is going to repeat out of context at the worst possible time ... don't. Just don't.
9. More precious to me than diamonds and rubies is a good long nap. Make it happen.
10. Next time we have a dispute over discipline, I win. (What's that? I always win anyway? It's the gift that keeps on giving!)
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