So when you have a child with “something”, all you hear about at first is how VITAL early intervention is. The earlier the better. If you could start it in the womb that would still not be soon enough. Because there’s this idea that if they don’t hit certain things by age five, all ability to learn anything new is gone.
Of course, because I was a good mom, as soon as the doctor said “Low muscle tone” and “possible delays”, I contacted our local Early Intervention people. Because The Internet said it was crucial that my daughter got all the therapy possible right away.
Or, you know, 3o minutes of physical therapy and 30 minutes of occupational therapy each week. Eventually we added 30 minutes of speech therapy to that.
Seriously, that’s all we qualified for. Ninety minutes. And because Maura needed all three therapies, we got the fabulously sucky time slot of 8:30 am Monday morning, Which meant I had to rush the other three kids about, get Maura and I respectable, the older three off to school (which started at 8:25) and then over to therapy. Which, luckily, was a couple blocks away from the older kid’s school.
We had awesome therapists though, who taught me what to do with Maura the other six days and 22.5 hours of the week. And it turned out, a lot of what we were doing was helpful. Because your normal everyday playing? That was therapy. Those were the skills she needed to learn.
“So, what other therapies did you do?”
For a while…none. Insurance doesn’t cover speech therapy for kids unless they’ve had a stroke or something. It doesn’t cover PT or OT unless they’ve had a stroke or accident. We were already paying $700 a month in health insurance, plus everything it didn’t cover (like blood tests and therapy and specialists and regular office visits…basically, it only covered us if we needed a kidney or had a stroke.) We had to be very choosy about the therapies we invested in. We also had to be accepted, as many of them in our area were for autism only – and we actually had Maura tested for autism. We paid $250 to hear that she didn’t have autism. Out of pocket. We tried applying for the state’s special needs children insurance, only to be told Maura didn’t qualify. Yes, our child wasn’t disabled enough. “But if you can get her a qualifying diagnosis…”
“Ma’am, the one blood test we ran cost us $1200 out of pocket. We can’t afford testing.”
Oh yes, good times.
Eventually, we switched insurance, that covered a handful of therapy sessions a year (like 10 or 12 – because you know these things magically cure themselves after a few sessions.) We found a hippotherapy place that billed as OT (as an OT ran each session and did OT things with her….just from on horseback.) I don’t know how hippotherapy worked, just that we did see improvement. Seriously, it’s the one therapy I recommend. It’s magical, strengthens the trunk, helps gait and fine motor skills and even speech somehow.
Of course, it was during one of these therapy sessions that Maura had her first visible seizure. Which spooked the horse (luckily, the OT’s husband – a professional horse wrangler – was in charge of the horse that day so the spooking wasn’t visible to me.) And luckily, the OT was familiar with seizures and knew what had happened. so when I went to the doctor with Maura and said “The OT said it was a seizure” – he took the OT’s word. Which was better than mine. I’d never seen a seizure in real life before Maura.
Also, the doctors took the horse’s spooking as confirmation as well. So thanks Horse!
About this time, my husband switched jobs and we got this magical unicorn of insurance that covered everything. EVERYTHING! No co-pays. No fiery hoops to jump through. It covered everything I could ask for. It covered ABA therapy if you had an autism diagnosis.
So I went to town. I looked up places and programs…only to still be turned away because Maura wasn’t autistic. I did find a couple programs, and we stuck her in them. They did help. She also took ballet, and that helped too. I fought for her to have all the freaking therapy possible at school. I was a bit obnoxious about it perhaps, but she was now 6 years old, with the fine motor skills of a 3 year old, and no progress in a couple years.
Even then, we got 30-45 minutes of OT per week.
I had gone down the path of the crazy-making, trying to find something to help my daughter. I drove her to this special, intensive, speech therapy that was a three month program, 2 1/2 hours each day, five days a week, with a commute of at least an hour each way. It did help a bit. But it wasn’t miracle working. It just helped Maura to talk a little more. Of course, we were happy with any progress Maura made. We had stopped looking for miracle cures years ago.
And then, we moved to Ireland.
Suddenly, I had to start over. I had to find her a school, find out what our insurance covered, find out about all the outside therapies to be done. I found out the special school Maura would go to, one for kids with moderate disabilities, didn’t have a full time speech therapist on staff. I wondered if we’d made a good choice with her, in moving to Ireland.
I learned we made a great choice.
See, the program she was in was all about language. It was all about working at her level, and working to build on her skills at a pace she could manage. It was just part of her school day, where they spent part of class time identifying which piece of furniture goes in which room, learning how to say the words as they went. They worked on life skills like toileting, dressing, opening packets of crisps – things Maura was interesting in doing, and needing to learn if she wanted to be independent. They planted a garden at the school, and did cooking on Wednesdays – from make your own pizzas to letting the birthday girl pick what kind of cake to make for her class party (she went with chocolate.)
And we didn’t do any other therapies.
And yet, Maura was making great progress. She learned new words, learned how to use the toilet, learned how to dump stuff in the big pot on the stove (which was not the most thrilling thing for me.) And she did this at her pace, so she was no longer exhausted.
So when we moved back to the states, I looked for that kind of program. And found it. They’re actually quite impressed with Maura’s independence. Our time in Ireland reminded me that life is its own therapy session, and skills can be learned anywhere. She still gets OT and PT and speech at school, but it’s also built into the program she’s in. She doing PE twice this semester because she loves it so much – and you know what? It’s great PT! Meanwhile, when she gets home, she can have down time, time to play with dolls and broaden that imagination, time to dig in the garden (poor garden), time to make her own toast, time to give me more grey hairs will her growing independence.
It’s funny. We could now afford all the therapies. But like many parents whose kiddos turn into tweens and teens, we’ve sort of embraced regular old life as our therapy, instead of paying someone $120 for 50 minutes of something. It’s not giving up, it’s just a different mindset. We now are more aware of what works and doesn’t work with her. We know what her pace is.
And today’s therapy? Learning to wait for the internet to connect to her iPhone. LOL! “Wait for it…”