She was just six months old. That’s when I got the first inkling that my experience as a mom wasn’t going to go exactly as planned. The milestones were being missed that early. Back then it was just the gross motor stuff: rolling over, lifting her head, tolerating tummy time. Her low muscle tone landed her in physical therapy and occupational therapy by 8 months old. Early Intervention. That was the key. She’d go through Early Intervention programs and preschool with the goal of being all “caught up” by kindergarten. Age 5. That’s when the window closes, right? *eye roll*
So, sure enough, she started the programming. At 2, we added speech therapy, at 2 1/2 came the sensory integrative therapies. At 2 1/2 she wasn’t all that different from her peers- they were just getting the hang of talking, and it isn’t outside of the realm of normal to be 2 1/2 and like to spin around in circles now and then! Her Autism diagnosis came at 3 1/2. Still, the plan was more speech, more OT, sprinkle in some ABA and she could still be caught up by the big F-I-V-E.
Of course five came and went. She even did two years of kindergarten with a one-on-one shadow. Did she catch up? No, of course she didn’t. I’m sure that happens sometimes, but it didn’t happen here. Maybe it’s a shame that catching up is the standard that so many parents hold on to during their early visits with specialists. Maybe it’s a blessing that those parents have that hope. It’s been hard to see so many years pass and to watch the gap between the other kids and her grow. It’s been hard to see kids who were alongside her in Early Intervention therapies pass her by and kinda continue on their way. We’re still very much here. As she ages, she spends less and less time with typically developing peers, there are fewer friends (for us both!), and less opportunities for inclusion in the community. I’ve changed my definition of normal, of progress, and even hope. I’ve found a new normal.
The work for me has been in adjusting to that new normal; in accepting that she may never catch up, the gap may continue to widen far beyond anything I’d ever expected. Sometimes the gap seems wider than others, but it’s always there. It will always be there. Of course there are other things that I hope will always be there, too, like her sense of humor, her love of music, and her willingness to hold my hand (usually). Just because she’ll never catch up to the typical kids her age doesn’t mean I won’t continue to encourage her, helping her through therapies and working with her to accomplish new goals and make more progress. The work is in adjusting to what actually is, not what I thought I wanted it to be. I’ve spent years shuttling her to all the therapies and putting her to work, but the task is in seeing that I have work to do, too. Rather than waiting and hoping she’ll catch up to her peers, I try to focus on the fact that she already has caught up to where she is today. I try to focus on the progress she’s made. And I try to spend the most time focusing on the incredible kid she is today.
Dani Gillman is Cofounder and Head of Marketing at Birdhouse– a Detroit-based startup empowering parents raising children with special needs to learn more about their children through a behavior journaling app for iPhone, Android and the web. She’s also mom to a 10 year old daughter (who happens to have Autism) and a 1 year old son (who has yet to appreciate the value of naps).