Remember back in high school when every family member, friend, neighbor would ask you constantly what college you were going to? And then once you were at that college, those same family members, friends and neighbors would quiz you about what your major was going to be and what you were going to do with that degree after college? I remember feeling so annoyed at repeating myself – feeling like I just wanted to wear a sign saying “University of Vermont, Geography Major (no, not Geology), and I plan to fold a lot of maps”.
That’s how I felt yesterday as I spent yet another two hours of my day on the phone with various OT clinics, trying to get some information on getting Howie evaluated for his sensory issues, and when we could start treatment. He’s getting OT services through his IEP at school but his OT there feels like he needs additional work for deep pressure and movement regulation – stuff he just can’t get at school.
For what felt like the 1,000th time, I went through our whole story. Yes, he was evaluated by Early Intervention at age two, didn’t qualify for any direct services under their criteria but was picked up under “clinical judgement” for his sensory and feeding problems. Yes, we had OT every other week for an hour for 6 months until he turned three, and was turned over to the school system. No, he still wasn’t eligible for any direct services there either even though his “sensory profile” showed a need for extra help, but was placed in an integrated classroom for preschool where he received accommodations just because of the room and teacher he had. It wasn’t until his PDD-NOS diagnosis that he was eligible for additional school services, and was picked up for school based OT services. And Yes, I’m calling you because we need more – more home support, more information on helping his body regulation, just…more.
And just as I had repeated my story for the 1,000th time, I got the same response back for the 1,000th time. Oh yes, we can help him. We have a sensory gym, one-on-one OT services, feeding therapies, you name it. But did I mention we have a large waiting list for treatment? Did I mention that we could get you in for an evaluation, but the cost is $900 and we don’t take your insurance (or any insurance at all)? Oh, and did I mention that we’re 45 mins away, and that you’d have to schlep all your kids in the car back and forth to a one hour appointment once a week? And did I mention that it might not even help?
I hung up the phone with the last clinic feeling utterly frustrated. It shouldn’t be this hard to get my little guy what he needs. And it shouldn’t have to be at the expense of my other kids. You like to think you’d go wherever, spend whatever if you know it would help your child. But the reality is, it doesn’t always work that way.
Just as I was about to call one of the clinics back to set up an appointment, I got a call back from Howie’s OT from early intervention. I had called her to ask for referrals or names of clinics that she would recommend for him, knowing his needs. After talking for a while, she mentioned that she does home based OT work in the evening hours, if we were interested in that. It was like a light had gone on in my dark world. Home based? Working on the specific problems we had at home within his own space and in the environment that triggers the sensory meltdowns? Why had I not thought of that before, and why had no one mentioned that to me as a possibility? It made so much sense, especially to do it with someone he knows already.
I’m still in the process of working this out, making sure it’s the right path for us. But all it took was one person to bring me out of frustration and show me that there’s another path. And that makes all the difference.
“Everyday is a winding road
I get a little bit closer
Everyday is a faded sign
I get a little bit closer to feeling fine” – Sheryl Crow