I think that having a child on the spectrum, or any child with special needs, is a roller coaster of emotional highs and lows. You rejoice in the little victories more than typical parents. You also experience reminders that ground you as to where your child has been, where they are, and how far they have to go.
Jack has been receiving aquatic physical therapy through Babies Can’t Wait. My personal feelings about Babies Can’t Wait aside, the aquatic therapy has been a positive and I think the world of our therapist. As is usually the case, the therapists are awesome, but the system sucks.
A couple of weeks ago, our PT brought it to my attention that Babies Can’t Wait had neglected to do a PT evaluation on Jack. She said that they usually don’t unless parents express a concern. Well, I was so focused early on with Jack’s social and communicative delays that I didn’t really consider his gross motor deficiencies. Sure, he didn’t move like the other kids, but it wasn’t high on my priority list. Jack took a long time to meet each motor milestone, but he was walking. It took a back seat to what I thought were bigger problems.
Even though Jack’s PT does aquatic therapy, PT evaluations have to be land-based. So, she performed one on Jack. As I’m watching him go through the battery of tests, I could see how difficult it was for him. Due to his expressive/receptive language delays, the PT was modeling actions, doing hand-over-hand demonstrations, giving multiple visual and verbal cues, and giving Jack multiple trials and test-runs to perform each task.
He couldn’t do most of it. He didn’t even try.
I felt the need to plead his case to the PT. He just doesn’t understand what’s being asked of him. He doesn’t understand what you’re saying to him. Let me try. Let me demonstrate for him. Maybe then he’ll do it.
In the hustle and bustle of the next week, the awareness of Jack’s performance on his PT evaluation was in the back of my mind, weighing me down, but I was busy and able to put it out of my mind at times.
Until last Thursday.
I had asked his PT to give me a call and discuss the results over the phone before our session that week. Since Jack’s therapy is in a pool and he has no awareness of danger (he’ll run toward the pool with no understanding of my warnings for him to stop), it is difficult for me to focus on what his PT is saying and to keep Jack corralled and safe. She called Thursday morning.
Her first words to me were “Now, don’t freak out.”
Good start to this conversation.
“Jack certainly qualifies for services. In stationary motor skills, he tests at a level of an 11 month old. In locomotion, which is walking, jumping, etc., he tests at a level of a 16 month old. In object manipulation, he is testing at a level of a 13 month old. In overall gross motor skills, he is equivalent to a 13 month old and in less than the 1st percentile.”
I felt a knot in my throat at those words. I was just told that my little boy, who I didn’t think was that delayed physically, had the motor skills of a child less than half his age. Essentially, he learned to walk, then his motor development stopped.
How did I not see it?
I’ve asked myself this question multiple times. When Jack had his first evaluations with Babies Can't Wait, which were performed about a month prior to his diagnosis with PDD-NOS, he tested as significantly delayed in every area they tested, which was everything minus gross motor development. At the time, I thought his only delays would be in social skills and communication. Of course, had I realized that they test self-help skills, I would have known that there would be a delay there, too. But to hear that he had a cognitive delay...that was hard for me to take. To hear how delayed he was once I got age-equivalencies, was even harder.
I didn't let it collapse me this time. I had a good cry and was bummed out for about a day. After that, I moved forward with a new resolve. This is just another problem to tackle, but we've already started working on it. It's good that it was identified now while he's young, so he can take advantage of therapy through Babies Can't Wait and special needs pre-K while he is still in this critical early intervention window.
I think that's key to survival with a special needs kid. For every happy milestone, there will be setbacks. Therapy reports and evaluations will always highlight something negative about your child. You'll always personally highlight the positives. For each challenge, you have to not let it consume you. You have to tighten your boots and march forward with a new resolve to work the problem and find a solution.
I'm lacing up my boots and we're going to tackle these physical delays head on. We're going to fight for therapies, school interventions, and everything else Jack needs for success. This is a fight I'm determined to win.