Not A Role Model Mom

Throughout Kayla's eleven years I've often had people remark to me with some variation of the following expressions:

"She is doing so well, you must work with her so much at home."
"She's doing great, it must be what you're doing at home."
"It really shows that you work a lot with her."
"So much of what she's doing is because of what you do at home."
"It's obvious you do a lot with her."

As I'm wondering what their definition of doing 'so well' means, and what ideas/expectations they had of what they expect someone with Down syndrome to be doing, or not doing, I smile, through gritted teeth, and swallow the guilt bubbling up inside of me. I feel like an imposter accepting these accolades.

The truth is: I'm not "doing" that much with her at home. The truth is: I am not a role model parent to look to when it comes to raising a child with a disability. The truth is: There is so much I could be doing better with her. The truth is: I haven't done anything above and beyond.

I don't have much confidence in myself as a parent, much less trying to be a teacher and therapist too. So I don't teach (often, or that well), and I don't stay on top of therapies as often as I should. Instead, I just try to stay afloat with this parenting gig.

I have always found it not so easy to try and "do things" with Kayla - you know, those educational things to keep her on track and progressing. Even when she was a toddler I often became flustered and I guess gave up easily. I don't make up flash cards or turn everything in to an educational game. I don't stay consistent with reviewing math facts.

I became overwhelmed at all the products aimed at kids with disabilities. Not only was it overwhelming, but it can be expensive. I looked at numerous reading programs but always balked at the prices and thought I could just recreate my own at home; except I never got around to doing that.

At our first NDSC Convention in Boston we bought a DVD of school readiness activity type things, but that meant we would have to print off all the pages. And there are a lot of pages. Pages and pages and pages. Joe printed off several of these units but at the time they were still a little advanced for Kayla. Then he deployed and they got packed up to storage. By the time we got them out of storage and thought about them again she was beyond those skills.

I bought the Numicon set, but I think I must've bought a very basic set (expenses you know!) because I don't have any big handbook of activities or how to really use it successfully. I have a small fold out activity booklet, but I know there is more to it than that. So it sits, hardly being used.

Once Kayla started school it became even more difficult to "do things" with her at home. When she comes home from school she is done. Throw in after school activities and therapies and time is even more limited.

At one point Kayla was going to vision and speech therapy 2x a week each after school. Girl Scouts 2x a month, Drama Club 1x a week after school, and Running Club 1x a week after school (although not the whole year).

We are supposed to do 'home exercises' from speech and vision therapy activities. In theory this shouldn't take long. We can squeeze in 10-15 for each therapy several times a week, right? Not so much.

After school she wants to unwind. I get that. She needs time to let her mind be free of all that learning. She wants to be upstairs or outside playing. And I let her; I let her play. But it is not easy to reign her back in and tell her she has to stop playing so we can do x,y,z. And then if we get one thing done I have to let her take a break and then go through the process of reigning her back in again. Outside for 30 min, inside to work on things, back outside for another 30 min? It simply doesn't work that well.

There are speech and vision activities, reading every day, general reviewing of information from science/social studies, study for quizzes/tests, attempting to do math, practicing handwriting. It feels like a constant, "Kayla do this, do that, we've got to study this, let's work on that, sit down and do this."

It seems like there should be enough time to do a little bit here or there, but it never works out that way. 15 min of vision exercises can turn in to 30 min after counting the time it takes to convince her to do it and go sit at the table, after all the breaks in between for being distracted, for fidgeting, for getting some water, for going to the bathroom. That's the same for anything structured we try and do. The process takes so much longer than it should.

If I feel overwhelmed and stressed at the constant "let's do this and this and this and work on this and this and this" how must she feel as the one being told to do all that?

Sometimes I feel like she must think that's all she hears. "Corrections to her speech and tongue placement. Time to read a book. Let's do Xtra Math on the computer. Let's review notes from science and social studies. Count by 10s. By 1s. By 5s. Let's do the multiplication game where you get the guy to climb the mountain. Read your phrase book. Work on your speech exercises. Get out your vision therapy glasses and let's do the number chart. You should practice writing some words." and on and on and on it goes.

She just wants to be a kid. She just wants to play. She just wants to be free to do what she wants to do.

And most of the time I let all the other stuff go and let her be a kid. Most of the time she plays outside longer than I intended because it's a nice day and the other kids are out and I don't want to call her inside to do more work or therapy.

So no, I don't do much with her at home. I don't drill her. I don't make flash cards. I don't make up games to work on skills. I try to introduce things, but am usually met with resistance and I don't want everything to be a fight.

We do what we can every night, but I know there's a lot I'm not doing. I wonder how much "better" she could be doing if I were more consistent. It I were a better teacher and therapist. If I just knew how to do things with her.

But I want her to enjoy her childhood, too.