Archive | March, 2012

An Invitation to Click

24 Mar

I’ve updated the “Blogroll” on my homepage. It has some great resources for parents and educators of children with special needs, especially Down syndrome. Check it out! Let me know what other web sites you have found useful as a parent, loved one, or educator of a child with special needs.

Speaking of clicks, if you click on this link, you’ll find a list of blogs about Trisomy 21. Some of them I’ve read and enjoyed, and some I still want to explore. For more ideas, check it out. (Oh, and under “T” you might see the name of a blog you already know and like! I just asked, and they added me. Thanks to them!)

Why Mommy Loved Therapy

18 Mar

You start the day with a picture chart, showing your developmentally delayed toddler exactly what is going to happen over the next half hour. Look! Here you are getting your diaper changed. Yes, then you get to have your milk and eat your breakfast. Then we’ll wipe your mouth — I know you hate that — and then you can play with your sisters. Oops, wait a minute, first we have to do these oral-motor exercises to strengthen your jaw. Open your mouth please, and bite down on this vibrating stick. Good! Now make a fish face until the stick pops out. Great! Let me massage your jaw while singing “Mary Had a Little Lamb.”  Oh, you wanted “Itsy Bitsy Spider?” OK….here we go.

High Chair Drama King

©thehighernest, via Flickr

A few minutes pass. “Itsy Bitsy” has now been sung 6 times. Mom is in agony. Child makes sign for “again,” and says “again.” Again.

Exercises finished, child must now clean up plate and put it in sink before going off to play. Oh, and he has to pick up the cup that he threw on the floor, just like he has been doing three times a day for the past 732 days, even though he is reprimanded each of those times and reminded of what to do instead, which is to place the cup on the circle that has been lovingly drawn onto his highchair tray.

This morning was made possible by the therapists who worked with our son for almost three years as part of the North Carolina Early Intervention program. They were the ones who came up with these great ideas for making life easier for our son, who has Down syndrome, and for us, his parents, who also have two other children: a daughter, age 6, and our son’s twin sister, age 3. (The oral-motor exercises I mentioned were part of a program developed by Lori Overland, SLP, a speech and feeding specialist who has become mildly famous for working to increase speech production and clarity in children with Down syndrome by addressing difficulties with jaw movements, jaw strength, and chewing and swallowing.)

Make no mistake, most mornings did not go like that — rather, they were a jumble of harried breakfast, harried mother and crazy young children. But on the good mornings, no, the perfect mornings, things could go like that. And as you can see, they were still far from perfect. They were, to put it gently, very busy. Of course, this is only my point of view. How did my son feel about all this? Well, he always loved his “lady friends,” but some mornings he definitely wanted nothing to do with the therapy itself.

For about two and a half years, I had the privilege of having a group of lovely young women therapists come into my house and work with my son — a physical therapist, speech therapist, occupational therapist and play therapist, also called a special educator. We also added a behavior therapist in 2011. Then he aged out of the program at 3 and started preschool in September, along with my other children — big sister going full time and little sister part time.

It has taken me almost this long to digest this transition and what it means, which is the absence of things.  The absence of brother and sisters fighting and crying nearly nonstop for hours; the absence of relentless morning activities, meals and schedules. The absence, most of all, of our beloved therapists. I’ve heard some special needs moms express pleasure at the thought of Early Intervention ending and not having a stream of people come into their house each week. I get that. I do. Feeling bound to the schedule, trapped in the house. But for me, those very minor inconveniences were far outweighed by my overall joy at having these incredible people right in my living room.

My teammates, helpmates, resident experts, colleagues in this strange new job they call full-time parenthood. In addition to the incredible task of helping us help our son reach his potential, they were also my shoulders to cry on, cheerleaders for all my children (and for me), resolvers of sibling warfare and gentle advice givers. Imagine if every stay-at-home parent had a nice lady come to the house and say in a very relaxed cadence that the parent was doing a great job. And then, very subtly, also dispensed some simple advice for doing things better. When our time for home therapy was up, I cried. More than once. OK, more than twice.

I called them friends — and always will — though as friendships go, they were a bit odd, one-sided and more crucial for me than them. I’m not sure how many professionals want to walk into work to be greeted by a wild-eyed, bed-headed mom with three small children sticking to her like jellyfish and who has little idea what to do with them. But our therapists never seemed ruffled when that’s exactly what they got.

While of course they were teaching my son the step-by-steps of sitting, standing, talking, eating, listening, and a gazillion other things large and small ending with “ing,” they were also teaching me. To be patient, to be persistent, to be flexible, to be creative, to take it easy (even on myself sometimes). Everyone with a young child should have a therapist to support them. Or maybe just people like me should, neurotic worriers who can’t seem to do the simplest tasks correctly even though they somehow managed to plan trips to Europe and land big-sounding jobs in the heart of Manhattan. People who now spend their days feeling bad for roadkill, especially flat turtles who could’ve never, in a million years, made it across a well-traveled roadway. Maybe there should be a test when you have a kid, and if you’re too sappy, you get a therapist to toughen you up.

How do you replace all that? You don’t, I guess. You just move on and hope for the best. So here’s me, hoping for the best.

What I’m really trying to say is: see you around ladies. Let it not be long before our paths cross again. Oh, and thanks for saving my life.