My twins were micro-preemies, and have developmental delays consistent with extreme prematurity that fall into the following categories: motor (fine and gross), speech, adaptive, social, and cognitive. As such, they are developmentally disabled.
They are approaching three years old, so I’m still only just learning about the laws, regulations, and resources for our family. Still, I am aware of ways the ADA has affected us. For example:
For their first year, the twins were too medically fragile for daycare. But when they turned one, I completed the paperwork to enroll them in the childcare center near us.
The staff insisted that the boys be placed in the toddler room because they were 12 months actual even though they were only 8 months adjusted.
Two face to face conversations and several phone calls were fruitless. I explained that neither was walking, and only one could pull himself to a sitting position. So, if the other was pushed down by a 2 or 3 year old, he could not get himself back up nor could he consistently roll over and crawl away. They treated me like an overprotective first time mother, and dismissed me.
Part of the ADA is reasonable accommodation for a disability, and while you can’t automatically put a child in a younger room, you can do so with parent permission. It’s number 12 on this hugely useful Q&A document for child care workers riiiiiight here.
Fortunately, the military has a program for family members with special needs that provides an liaison to help with these situations, and we were a military family. The liaison called the center and chatted about compliance with the ADA, and the turnaround was immediate.
Another long-term effect of the ADA for kids like mine is the boundless playground.
While the boys have recently come very close to catching up with their peers on gross motor skills, and are only about 6-8 months behind in fine motor, for quite a while their developmental disabilities made boundless playgrounds the only safe place for them to play (and gain the strength and skills children learn through active play).
Further, they had (and continue to have) playmates who have limited mobility, which make boundless playgrounds the only place outside of their therapy center where they can play side by side with their friends.
I’d write more, but I already have. Here’s a post from a year ago about boundless playgrounds.
The ADA accommodations in our daily lives are too numerous to mention. Just yesterday, we took the city bus for a shopping trip. When the bus pulled up, it “knelt” to curb level and the driver deployed a ramp that let the boys scamper up onto the bus in delight. He then waited until we were seated to move on, though it took a while. This wait didn’t make the bus late because the schedule is built to accommodate the slightly longer boarding times of those who use assistive devices or have less mobility than others.
As they grow older, and move from being mostly at home to starting school, I worry a lot. I’m grateful for the ADA because it gives us a resource to ensure that they have positive experiences and thrive where we place them.
This is important because now their disabilities are “hidden.” If either child were playing or sitting, you would never know they had a disability. This is because they (and we) have worked hard in OT/PT/Speech therapy sessions and practice between sessions to catch them up. So, the most obvious hurdles have been surmounted.
What’s left is more subtle, but can still be debilitating.
When they were one, their delays looked like unavoidable medical conditions. Now, they just look like lazy parenting and kids being brats, and so many people (from strangers to friends) have strong opinions on what we could be doing better as parents to “make” them hit culturally dictated milestones such as losing the bottle, potty training, and tolerating overstimulation without meltdowns.
After 2 1/2 years, I just don’t care about stink eye or unsolicited advice (seriously, not a single fuck is given these days), but I worry about what happens when they enter school/pre school and I’m not there to adapt their environment or to shield them from people’s unkind opinions.
Fortunately, when they graduate out of the state’s early intervention program and enter public or private preschool, the ADA requires that the school make accommodations for their disability whether the individual providing them thinks they’re real or not.
For their sake, we hope that they qualify for public preschool. But we’re also working hard to find schools that are comfortable with non-neurotypical children, and that will understand our decision to raise them at their own pace because of their disabilities. It helps to have a law to back us from as we do, and that’s why we celebrate the ADA.
Featured image by Patrik Jones, and can be found on Flickr