I wrote about how we’ve been parenting in limbo over here, waiting for a diagnosis for my kinda-sorta-maybe special needs kid. Well, this is part one in the story of our search for that diagnosis…
Lagging skills. That’s the term they used to describe my girl when we took her to the first round of specialists. She doesn’t understand boundaries. She doesn’t give other people personal space. She bursts into tears and has screaming temper fits. Lagging skills. She just needs time to catch up.
Near the end of my daughter’s Grade 1 year, my husband and I sat in a tiny conference room with her teacher, the vice principal, the school’s child and youth worker and a specialist from the school board. We discussed how my child disrupts the classroom by crying and screaming. We talked about how she doesn’t respect the other children’s personal space. How she fidgets, picks things apart, chews on things.
She might have a Sensory Processing Disorder. That’s what the lady from the school board said, after giving me the number of someone to contact at the local Children’s Centre.
The number was a dead end. The man I spoke to had no idea why I would be referred there. He sent me on to a superior who told me that they didn’t offer Sensory Processing testing and never had. She told me that if I chose to pursue testing it would be an out of pocket expense of two grand, and a waste of my money, because based on the three questions she asked me over the phone she was pretty certain my child didn’t have any sensory issues.
Well, this place can help her, I was told, as the Vice Principal handed me a packet to fill out for the Regional Children’s Hospital.
It was almost the end of Grade 1 when they handed us that packet of documents to fill out. My girl was well into 2nd Grade by the time our spot in the waiting list came up. They sent a child and youth worker to our home to interview our family. I felt like they were looking for flaws in us, in our parenting skills, to explain my daughter’s problems.
“I’m not here to help with school problems. I don’t really want to hear about that.” said the gentleman perched in my front room. “My job is to help make things better at home.”, he explained as he handed my husband and I bundles of xeroxed papers full of parenting tips.
His visits were weekly, biweekly. He asked questions about my daughter’s behaviour and nodded his head a lot. I kept thinking that at some point he was going to reach the punchline. He would say, “Ok, I have all the info I need. Now here’s the game plan!”.
Instead, he agreed with my husband when he said, “I think we’re already doing the things on these papers you keep handing us, we’re just not labelling it with these fancy terms.” Yep. Good parents. You’re doing fine. And yet…
In the second half of 2nd Grade, our spot on another waiting list came up and we started one on one therapy sessions at the Regional Children’s Hospital. Twelve sessions. That’s the max they can do. They focused on helping my daughter with being hands off and giving people personal space. We got a bonus thirteenth session after my girl had an epic meltdown in the child and youth worker’s office at our eleventh meeting.
After that, my daughter’s program coordinator at the Regional Children’s Centre “released” us, assuring me that we could contact them at any time if there were any major problems.
But there haven’t been any major problems. Just this continual slow grind day to day of something isn’t quite right.
The care coordinator also suggested we ask our family physician for a referral to a child psychiatrist. When I did that our physician tried, twice, to give me the same packet of papers that the school had given me, to refer us to the Regional Children’s Centre which had just dismissed my daughter as, presumably, cured.
Eventually, our family doctor did give us a referral and in the first half of 3rd Grade we got the call with an appointment to see the child psychiatrist. I filled out a thick wad of surveys in the waiting room. We met in a small battered room that looked like it hadn’t been updated since sometime in the 60s. The psychiatrist had a thick accent. She asked us all of the same questions we had already answered so many times. The same questions I just checked off on the paper survey. She had my husband and I leave the room for a moment, so she could speak to Gigi separately, and then called us back in two minutes later.
“ADD or maybe ADHD.” she suggested. Telling us to take another pile of papers home and to get her teacher to fill out a survey.
At our next visit, several forms from the school and two pages of checked boxes later, she said, “Probably ADD. I can give you drugs.”
That’s how we diagnose ADD? I fill out a survey. My child’s teacher, who has only known her for two months at this point, also fills out a survey. You add up the checked boxes, assign my daughter a score, and blammo, “Of course in younger children, there is always the concern of side effects. Sometimes children become moody, depressed, suicidal. I must tell you these things, so you know. You know your child best and you must watch them carefully. I can give you a prescription, or you can get it from your family doctor if you prefer.”
I asked for other options and was told that we could take her to get her tested for ADHD, that we needed something called “psych educational testing.” I explained how I thought that is what we were going to do here. “Oh no, I can give you drugs, and we can see if that works, or I can give you a list of names of private child psychologists, and you can book a test with one of them.” She told me that the school would wait until my child was at least two years behind academically before they would do anything. She recommended not waiting. She gave me a long list of things to ask to have my daughter tested for. I was warned that the test is expensive and is not covered by OHIP.
Apparently, my daughter was at an awkward age. If she were younger there are local places that would help her for free, up to age six, and if she were older there were other places that could assist us, for ages twelve and up. But at age eight she was in this no man’s land where our only options were to go private.
So prescription drugs with crappy side effects that may or may not help my kid, those are readily available for free. But further tests to figure out what’s actually going on with her? Those I have to pay for.
We started this journey in 1st Grade, now here we are in the second half of 3rd Grade and my daughter is finally getting the tests she probably should’ve had two years ago. It took jumping through all of these hoops and talking to dozens of people, just so I could get handed a badly photocopied list of names.
What about you folks? Does any of this sound familiar or are we just on a particularly bumpy journey to a diagnosis?