Here is the latest edition of X-tra Special Advice. Mary Beth added a note to it when she sent it to the listserv that I kept on cuz it’s good extra info on this topic. I’m with Mary Beth on the whole cutting nails thing. It’s really rough sometimes. Rachel is doing pretty good with it. She lets me do it now, and if she is really against it then I break out the nail polish and she melts right into the chair.
We have to tackle Matthew right after a shower because he got the wonderful thick hard nails. They are tough as nails! Hee Hee…I couldn’t help that pun. It takes some coaxing and obviously nail polish doesn’t work with him. The whole time he’ll moan that it hurts or tell me that he’s done. I know it doesn’t hurt because he can’t feel pain in the first place and I don’t cut them all that short so he won’t freak out. It’s just his way of trying to psyche me out so he can get away from me.
I have sat on him in the past to get it done. He thinks it is hilarious when I do that. Luckily, I don’t have to do that now. I do find it interesting that I am the only one who ventures near him with nail clippers. I find that unfair. I think everyone should share in the duty.
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COLUMN NAME: X-tra Special Advice
HEADLINE: We’ve nailed the nails
COPY: In some ways it seemed to happen overnight, though it really took much, much longer.
Somehow, cutting Andrew’s nails is no longer the pure torture – for all involved – that it was just a short time ago.
Some may dismiss this as nothing to celebrate. But if you’d seen how many ways we tried to make nail cutting an easier process or how many hands and legs it some times took to hold down the appendage on which the cutting was occurring, you’d see why this truth is worthy of celebration.
It was a number of small baby steps and trials, many in error.
It was a number of pieces of advice sought and attempted, many with failure.
But somehow – most likely with the help of maturity and God’s intervention – cutting Andrew’s nails went from being a mess of a scene with octopus-like flailing involved and no positive reinforcers working to a situation where Mary Beth can simply say “I need your hand” and the hand will appear on the table, even if the TV is not tuned in to Noggin!
You might be able to guess that Andrew would still never choose to have his
nails cut. Plus his feet are still pretty ticklish to the touch. But there’s no fighting, no scratching, no screaming, no biting, no running, no tag-teaming, no big pre-nail-cutting workouts to pump up for the semi-weekly torture session. It’s no longer dreaded by anyone involved in the process.
And that seems like an amazing thing.
Since there still are days where many seemingly simple situations are dreaded and torturous, the realization that one of the formerly tortuous events is now an average, common, everyday event is something to celebrate.
So let’s dance!
Grosse Pointe residents Theodore G. Coutilish and Mary Beth Langan created this column to share experiences from their journey as parents of a child with Fragile X Syndrome [fragilex.org]. Send your questions or comments to email@example.com or firstname.lastname@example.org.
EXTRA NOTE TO FOLKS READING THIS EMAIL: Ted & I mostly take turns writing
these. I wrote this one and Ted thought it should be scrapped. I think some other parents (maybe other moms mostly, not to be sexist) get how hard cutting nails can be and why I’d be so overjoyed at having it not really be an issue any longer!
The wacky last line is a nod to Ted, who loves repeating favorite movie lines. It’s from… hmmm, I think Rodney Dangerfield in Caddyshack.
The really ironic thing is that although it’s not a hard task anymore, I still have to remember to DO IT! I hadn’t done it in too long and last weekend Andrew took the opportunity to scratch me in the worst way so far in his life when he was anxious and frustrated one day. So I’m dancing about the task of cutting nails not being a bad sensory issue any longer, but not really dancing about the behavior of Andrew scratching more when he’s in his fight-or-flight mode. It’s always something!
~ Mary Beth