Monday, January 26, 2009

To Parents of Kids With Significantly Impaired Communication Skills..

I wrote this a few days ago.. needed some time to decide as to whether I was going to post it or not...

[to borrow a phrase from the lovely Ang Warner ]


I thought I was tough, that I could handle anything. And life so far has certainly thrown me more than its fair share of curve balls, which I have all been able to catch and lob back…

But I realize now that I have only scratched the surface of ‘tough’.

My beautiful oldest boy, who has an ASD diagnosis + the usual alphabet soup of co-morbid diagnoses, came down with the flu about 9 days ago. And for about 4 days, he lost his ability to communicate.

One morning he woke up with a severe case of laryngitis – all he could utter was this little squeak that you would expect to come out of the love child of a cat and an owl.
Then he lost his ability to read due to pounding migraines, and his visual-sensory systems going on tilt.
And then he lost his ability to write due to extremely low muscle tone (he couldn’t even hold a pencil, let alone make it move across a piece of paper) and other neurological issues that affected his ability to remember and then form letters and words. He could not even draw a stick figure.

The flu rendered him mute, not able to express himself in writing, not able to read.

For four days I watched my son struggle to communicate to me what he wanted and needed. Neither of us knows a meaningful amount of sign language (plus with the muscle tone and visual motor issues, I doubt he would have been able to use his fingers sufficiently to form the signs), I do not own a PECS system. Watching him like that, mute with hardly any other avenue available to him to communicate, it tore me apart - it was brutal.

I never before experienced what it feels like to see your child, with his mouth open wide, soundless, with tears streaming down his face, and not knowing whether he was laughing or crying, and not knowing what to do to ‘make it better’. I hope to never experience that feeling again.

I have a bruise on my chest from where my beautiful boy dug his head into me to try to relieve the headaches, finger patterns on my arms from where he grabbed on to me in his attempts to make me understand, to ‘hear him’. I have pillows on my couch which now bear teeth marks, testimony to his frustration. Shredded paper from a notebook everywhere over the house. Pencils snapped in two, and thrown after the shredded paper.

What kept me from going places in my mind that I do not ever want to go is that I knew that, for my beautiful boy, this was a temporary situation. And that my son has the cognitive awareness to understand that this would not last forever. And that, by now, he has enough control over his temper and his moods to not take his frustrations out on other people. And that he at least was able to sleep at night..

There are so many of you out there though for whom what I described is NOT a temporary thing. It has been YOUR reality, YOUR CHILD’S reality, for many many years. And it very well may be your reality for many more years to come.

All I can say is YOU HAVE MY ENDLESS ADMIRATION. For continuing to look for ways that could help, for not ever giving up, for staying in this fight, for working through situations that I only had to experience for a couple of days,… again, and again, and again. [And for showing restraint in not ‘braining’ the next person that comes along and leaves a well formulated and somewhat sanctimonious comment telling you that ‘Really, autism is not such a bad thing. Why the negative take on things? Why this urge to want to cure your child? Just love ‘em and all will be well’.]

To parents of kids with significantly impaired communication skills, I am in AWE of you. Those 4 days have been a reality check. I will never ever take my son’s ability to communicate with me for granted. And you have my unwavering support in pursuing any means you deem necessary in helping your child improve his/her ability to communicate, and as an extension of that, in finding a cure for what ails your child.

This past Friday morning, my son regained his voice. And I broke down in tears when I heard him say: “I love you, momma. I feel much better today.”


At 2:02 PM, January 26, 2009 , Blogger Charlie said...

P, nicely done! I love this piece! :-)


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