Supporting Families & Caregivers
“We have a loving little family, but we’re a blended household, so people have a hard time understanding why I would take on raising a kid like E when he wasn’t my own. He has a lot of behavioral issues and social-emotional needs. E also has a lot of difficulty managing sensory input – sounds, textures, and even simple things like walking and playing on the playground, but he doesn’t have a physical disability so this doesn’t make sense to a lot of people. We’ll be out and nobody will know he is disabled, so we get pegged as bad parents if he has an outburst.
Things have been really hard this year. Doctors and therapists told us to wait until 7, the age he is now, before talking about a prognosis or what his adulthood will look like. He was attending a little neighborhood school with wonderful kids and formed really strong friendships with other students in his class, but he came home with bruises from the staff who were supposed to be supporting him. My wife was devastated and advocated with the school. She got feedback that she was asking too much of the staff, like it was E’s problem that they weren’t able to support his needs. Who would ever tell a family that it was understandable for adults to bruise a little kid?
We’ve been working with the school district and it looks like we have a good plan for next year, but we’ll be homeschooling for eight months by the time that E gets back to school. There’s not much support for families like ours when we’re in the midst of this type of “low grade” crisis. The school district says they are doing everything they can and, at this point, we believe them.
The Department of Developmental Services has given our family some flexible funding to pay for assistive technology and respite, but we don’t have enough to cover the actual amount of respite we need or to pay for activities that E can do so that he can continue to build his friendships. I wish our family could get into the DDS-DESE program, but we’ve heard from families with much more significant needs than ours who have applied year after year and still haven’t been approved. I have no idea how exactly we’ll get through this year, but it’ll be just like all the others: we’ll keep waking up each morning and doing what we can until it’s time to go to bed again. I just wish my wife and I could go on a honeymoon. We never took one after getting married because we couldn’t afford and we don’t know anyone who would be able to watch our children for more than an overnight. “