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The Path

January 9, 2013

Do not go where the path may lead, go instead where there is no path and leave a trail.
~Ralph Waldo Emerson

I don’t have a clue what I am doing. I really don’t. I am totally winging it. It’s almost laughable to me when friends might ask my advice about this whole raising three autistic kids thing, because I am by no means an expert.

We try stuff, we step back, we evaluate, adjust and try again.

And you know what? It works. It works for us. There is no roadmap, no guidebook. There is no plan for this journey. And maybe that’s the very best part.

The last few months have been filled with changes. Mary has graduated from her home-based early intervention services since she turned three. She has started at a fabulous new school, and I had been in a panic trying to fill the void that was left when her EI team left. But then I suddenly realized we were over-scheduling her again. We were pushing her past the point of exhaustion… Again.

So I stopped and re-evaluated. And I realized something about myself – it’s the trap that I think a lot of us special needs moms fall into: the tally sheet.

We spend so much time researching the hottest new therapies, or talking in terms of how many hours of therapy services we have managed to secure, or trying that horseback riding thing, or that social skills group, or that feeding therapy, or the group physical therapy, the speech program, the sensory integration specialist…… I started to view my worth as a mother – my level of success as their advocate as directly related to the number of therapies and doctors I had secured for my children.

I did something last month that some might find a little risky. I cut back on some of Troy’s therapy so he could have time to play basketball. Oh yes I did. “Medically necessary” and all that. It had to go, because my son – the little autistic boy who absolutely froze on the t-ball field a few years ago – wanted to play on the basketball team with his friends. And he loves it.

We were going to have some home hours of ABA for Joyce. She could use it, she really could. But after a big fight with the state’s insurance company, our private insurance said they would pay for it. But we opted to step back a bit. To let her get settled into kindergarten – full day kindergarten where she still gets full support from her behavioral team with a behavioral therapist seated next to her in class all day. While we will probably come back to some of the home therapy soon, the ability to spend that time snuggling with Joyce on the couch or pushing her on the indoor swing in our playroom, or just doing a puzzle with her is priceless.

And with Mary, we stopped the sensory integration therapy that she and Joyce were both receiving at home in favor of her getting a good nap before her older siblings come home from school. We are holding back on the new physiatry therapy group and the horseback riding therapy that was recommended to us. They all sound fabulous. I’m sure they would all be beneficial, but sometimes just having the down time is therapeutic.

All of them are still getting lots of therapy. We are not neglecting them in that respect. They are still learning coping skills, communication skills, and social skills. But for right now, we aren’t running off the tally sheet. We’re just trying our best to do what feels right for our family. And suddenly, Mary is blossoming – she is engaged in many new and exciting ways. She is dancing, she is staring into our eyes, she is vocalizing, signing. She is amazing. And Troy and Joyce have friends; they have “normal” activities like basketball, art club and Girl Scouts; they walk hand in hand into school in the morning; and they have time to play with all the fabulous toys they got for Christmas – just like kids should.

We’ll probably try many of those treatments and therapies. We’ll probably get Mary back into a real physical therapy regime (she already gets PT, OT and Speech at school – so we’re not neglecting it entirely. 😉 ). We’ll probably get back into some sort of sensory integration program for all three of them….

We’ll do it all…. Someday. I don’t know when. I don’t have a plan. I’m winging this, remember? And that’s the fun of it.

Mary’s new fish tank that she got for Christmas. We’re adding the fish slowly – up to 5 so far. She loves having the time to sit in her rocking chair in the afternoon and watch her new friends.

2 Comments leave one →
  1. Life&Ink permalink
    January 11, 2013 2:29 pm

    You are doing absolutely the right thing, trusting your instincts and slowing down life. So glad you realize that. And as I read about all the therapies, I was like, oh my, I am a dinosaur, because they didn’t have half of that when Teddy was a little guy! And I wonder, have we turned autism into an industry?

    • January 11, 2013 6:39 pm

      Oh, I think autism is definitely an industry these days. I just look at how much all these therapies cost, not to mention all the sensory toys, books, etc. And it’s really hard not to buy into it – after all, we want to be good parents, right? I guess at the end of the day, what works for your child is what works for your child, and the rest is irrelevant. They still have to have time to be kids.

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