Clouds, May 2010

Clouds, May 2010

Monday, August 1, 2016

one for the books (or blog)

One time a couple of years ago I trimmed Hayden's fingernails by myself following a long, drawn out scenario like you would not believe. It was just one of those days when it was not going to happen, even with both parents assuming our usual approach of what we do to get through this. Finally when we were all emotionally drained, my devastated child with his tear-streaked pink face sat down, put his hand out in front of him, & said to me, "Please do it." He sort of sniffled his way through the whole thing but it was still amazing that it got done, with just my hands & his. When I finished he asked for his iPad & quietly retreated to his room.

Personal grooming & maintaining proper hygiene can be quite a struggle with people who have fragile x syndrome, despite how much they really want to feel good & look good. The difficulty is primarily due to sensory processing disorder & tactile defensiveness when it is time for hair cuts &/or hair styling, shaving, oral care, & nail trimming... to name a few. Dentistry aside, because I don't know anyone who loves that, but imagine trying to explain to someone like my son that most people gladly pay for someone to do their hair & nails... that going to a salon is a treat?!

Back in 2011, one of my blog posts described what it's like to trim Hayden's nails. As an analogy, I tried to illustrate a very complicated scenario of simply trying to cut a piece of paper.

To paraphrase, I said to imagine 
that you're wearing pants that are too tight. And think how your movement would be restricted if you had to sit on the floor, with your legs crossed like a pretzel. This sort of describes the uncomfortable pressure of having to safely get a large, desperately resisting child to sit somewhat still.

To understand how your hands are going to feel, make a fist with your less-dominant one while sitting on that arm.
Do this until your muscles start cramping, and your arm tingles. 

To understand the difficulty in maintaining precision, hold a piece of paper in your partially-numb less-dominant hand & try to cut the paper with a tiny pair of scissors using your other hand (the dominant one). It's going to be difficult but if the cuts are not precise then the paper will "bleed". 

But it is more than imagining trying to awkwardly cut a pretend piece of paper while your muscles are cramping. Imagine that someone is literally kicking you & pushing you while you're trying to do this. And at the same time, they are trying to pull that piece of paper from your tired, cramping, less-dominant hand. And the jerky movements from the person who is desperately trying to push & pull their way out of the situation, is also repeatedly asking you if you're done.
When I wrote that blog post back in 2011 Hayden was verbal & stringing words together, but not yet communicating in full sentences. And his articulation & pronunciation in general were still developing (as they are now as well). So the word done sounded like the word gun. And his voice would grow increasingly loud & desperate with each fingernail. "Gun? Gun? GUN? GUN??!! GUUUN??!!!!"

By now you are sweating, your muscles are throbbing, some of your extremities are numb, & you've barely survived trimming 5 fingernails but there are 5 more to go. And you have to completely flip-flop your position in order to attempt to safely control the other hand. 

In other words, time to start over again from the beginning. You can't back out now if you wanted to, because once the task begins the child will not settle until the follow-through is complete. Giving up would actually be worse than the struggle of finishing. 

Assume you have survived trimming all ten fingernails & you are now pacing to help yourself calm, while shaking your hands vigorously to regain feeling in them. And let's not forget this is a necessary task that must be repeated several times every month.

You wonder if your child will ever be desensitized enough to tolerate basic self care, let alone develop the fine motor skills to do it themselves! They are only going to continue to grow bigger & stronger. For the moment you feel hopeless & upset.

But as usual, your thoughts are interrupted by a much more important one... the one that resurfaces every time your child maintains such effort to resist a situation... because imagining what your child must be going through that they try so very hard to stop you... is not something that you want to imagine.

So like I said, one time a couple of years ago I trimmed Hayden's nails by myself. This afternoon was the second time that ever happened. But it was different & significant because it was actually quite calm.

Following me prompting him to retrieve the nail clippers from his room, he managed to sit beside me & let me trim one fingernail that was bothering him. Those are the ones that are typically the toughest because he has a sort of inner struggle with himself... wanting it to be over but unable to even start... & the anxiety of the follow-through only worsening the situation. It's tough to explain but when there is one nail that needs to be fixed, or one loose tooth, or one hair strand that is too long & needs to be cut... it is a nightmare following through with fixing whatever it is. Regardless how nonchalant we are.

So imagine my complete shock when I trimmed the one nail & then the one next to it. And then the one on the other side. And then I explained since there were only two left on that hand, we might as well finish. And we did! And then he asked for a prize-- which is fine-- & I reiterated how proud I was & said let's do the other hand & we will get a prize. We discussed where he wanted to go... what he wanted to get (a pickup truck)... & everything was going relatively well.

And then I got grossed out because of the amount of dirt under his nails... which surprisingly worked to my advantage because he thought my reaction was hilarious. So then I really played up the nausea & pretended to literally be on the verge of getting sick. 

At this point the only reason he was not keeping still was because he was laughing so hard.  

Of course me being so blind with pride next thing I know a simple trip to a local store for one $5 pickup truck turned into a pizza Play Doh set instead, plus a mini plush dog from that Pets movie, plus Nutter Butter bites, plus pita chips... & a failed attempt at sneaking in a police cruiser when I was up at the register paying.

But you know, maybe I'll allow myself to be hopeful that we can save that prize for another day.

One at a time...