I wasn't sleeping tonight, and my mind was drifting. I started thinking about what would be the dream way to get help with Janey, and help for family respite, and help for all other kids with autism. It started with the daydream we all have, about having billions of dollars, but I was thinking how although that would be nice, no amount of money would automatically translate into any respite for families with an autistic child. I thought "well, what would?"...
Here's my fantasy. Build a autism respite center. This would be a center designed especially for autistic kids. It would have areas dedicated to all kinds of things that kids with autism are drawn to---a water area, a sensory area, a video area, a jumping area, a iPad area, a room full of pillows, a snack area, an outdoor fenced in running place---you get the picture. It would be staffed with a variety of people---specially trained teachers, nurses, volunteers with an interest in autism, high school students, PTs, OTs, speech therapists---anyone who enjoys working with children with autism. Then issue vouchers to every parent in the state with a child with autism, to be used for a certain amount of hours at the center per year. The hours could be scheduled in advance, but some would also be able to be used on an urgent as-needed basis. Each parent would have already filled out information about what their child likes, any medications or allergies, emergency numbers, all that. They bring their child to the center, check them in, and GO. For the hours the child is at the center, the parents know the child is being cared for, is most likely having fun with all the special areas, is safe and contained. So---the parents can spend time with their other kids, or go shopping, or go to a movie, or just go home and sleep. They would be called if there was an emergency, but otherwise, they would have a nice long break. They'd pick up the child later on, refreshed,everyone happy.
I have other ideas for this center---a club for siblings, a room for parents who might not feel comfortable yet leaving the building (but with NO obligation for parents to stay there if they do want to leave), a toy exchange area, a volunteer training program---I have lots of ideas!
I think this is a do-able fantasy. The respite would cost less and be more co-oridinated, overall, than giving each parent money for respite and making them find it on their own (not that that kind of money even exists either, right now). The center would only have to be open during non-school hours---weekends, vacations, summer. I think much of the staffing could be volunteer, as many high schools now require community service, and many members of the community would like to help children with autism, but just don't know how.
One of the main focuses of this center would be the parents! I would want it to be a stress-free place for parents to go. The parents would NOT be asked to volunteer. They could, if they wanted to, but they would never be asked to. Most parents of a child with autism put in more time than anyone could imagine already dealing with autism. This center would be for them as much as the child. If local businesses wanted to, they could give gift certificates to the center to be given to parents. Imagine dropping off your child, and getting a surprise gift certificate for a nice dinner out while your child was cared for!
Siblings need respite too. Perhaps there could be a special sibling day, when the brothers and sisters get to go to the center for a party just for them. Some days could also be for the sibling to attend with their autistic brother or sister, but NOT be asked to help with them.
It's a dream. In reality, I can picture all kinds of problems and issues, but I'm not going to think about those right now. I'm just going to try to get back to sleep daydreaming about Janey having the time of her life at this imaginary center, while my husband and I spend an entire day just relaxing. Wow.