Often times having a child with special needs means one parent stays home at least part-time to care for that child. This is the case in our family, where I have stayed home, worked from home and worked away from home between part- and full-time since Bryce began his elongated NICU stay three years ago.
At first I wanted to be at the NICU all of the time, then when he came home we were under house arrest for several months during flu and RSV season and eventually I was able to work out a way to work mostly full-time while only leaving Bryce two days per week.
This allowed me to try my best to ensure that Bryce was receiving all of the necessary therapy and special care that we could physically and fiscally provide.
But I also enjoy working – some.
Work allows me to have an identity beyond “Bryce’s mom” (though that is still the most important part of who I am) and to work at something that results in a daily sense of accomplishment, which special needs parenting rarely does. I’m lucky because I have been able to figure out a way to have the best of both worlds. But I haven’t always felt lucky.
Recently, we thought we were going to have to change our day care provider because Bryce’s significant, global developmental delay meant that he didn’t meet the standard criteria for moving up from the infant room to the early toddler room. He was 2 ½ years old at the time.
I tried to communicate with our provider first but it’s not a special, inclusive school and they had no experience with cases like ours. Few do in our great state of Texas and even fewer in the Austin area do, though Sammy’s House is a popular, local choice.
Eventually, out of frustration, I began looking into other providers in our area. I was willing to make a trek, to pay a small fortune and give a little as long as he could be in a classroom with his developmental peers. I knew in my heart that he needed something I couldn’t give him: peer “pressure”.
It didn’t take long though to begin to feel as though the world was against us. I had a couple of good experiences in which facility directors encouraged me to bring Bryce in for a trial day and assured me that they would be happy to host his entourage of therapists and even accommodate for his walker being in the classroom.
Unfortunately though, I had a lot more regretful experiences than positive ones. Is this some sort of special needs mom developmental milestone? If so, I wish someone had warned me because I was ill prepared to deal with the emotional turmoil of having my child pre-judged, stereotyped and discriminated against.
I came to realize that not everyone wants to be accommodating; it is more work after all. And the vast majority of the general public is frightfully unaware of the challenges facing such parents and may never have even heard of the Americans with Disability Act. I had facilities tell me my son would unfairly take away from the other children, would need a one-on-one care giver and that putting my 2 ½ year old in a classroom of 1-2 year old toddlers would be against the law. All without ever setting eyes on him.
The first, and therefore worst, was the woman from a local church-based day care who felt the need to talk incessantly in an effort to cover her unease and ignorance. She incorrectly informed me that my son belonged in an Early Learning Environment for children with special needs even though he was nine months too young to start the program for which I had already been working on getting him into for three months at the time.
Luckily, we were finally able to communicate with our current provider and Bryce has been progressing nicely in their early toddler room for a couple of months now. Of course, in some ways he is more work than the other, younger, children. But in many ways he isn’t and I can’t help but see the overwhelming benefit to him and those other, “normally developing” children, of spending this valuable time together at such an early age.
Hopefully next time I have to face discrimination head on my skin will be a little thicker, my knowledge a little deeper and my patience at maximum capacity.