Direct Services---that's what autism needs!

This article is something I happened upon, and it made me wish I lived in Jacksonville! I just recently figured out the term for what I think is desperately needed---direct services. If I am correct, it means services that directly aid children with autism---not money for research, not money for awareness or walks for some small portion of the "cause", but real services---respite, recreation, camps, after school programs, buddy services, sports opportunities, things like that. I am so lucky that Janey is in a great school with a great after-school program, but I still wish for more. Janey loved the Irish Step lessons she gets at afterschool. I wish she could go to more lessons---real swimming lessons, not just an open pool, a day camp, gymnastics lessons, all kinds of things. Things that "regular" kids can do.

The other part of this is that I think there's a lot available I have no idea how to find, or that is available only to certain richer communities, or certain religions. A wonderful resource would be a person (or guidebook or website) that brought together all the actual direct services out there. I think sometimes places that have a program avoid advertising it too much, for fear of being overwhelmed. I can get that, in a way, but on the other hand, it bothers me, if only in that is shows how desperately such programs are needed.

And there's the question of quality. I never want to put anyone or anything down here, so I won't get specific, but one sports opportunity we tried just wasn't safe. Janey was repeatedly being assaulted---pushed over and hit--- by a boy bigger than her, also autistic. I don't blame the boy. He wasn't being supervised, by his father or by the staff. And they were frankly overwhelmed. It was a mess, and we decided to just stop going. I don't think most families would tolerate that kind of situation for their "regular" kids, and I see no reason they should for their autistic kids either.

I am so lucky in what Janey does get to have at school and afterschool that sometimes I feel like I'm being greedy in wishing she was able to get more, and maybe for right now, she is getting enough. But she won't always be at her school, although barring miracles, she'll always be autistic, and there are many, many kids like her. I hope that some of the wonderful giving that people do to help autism will get directed to programs that will directly serve our great kids!

A Fantasy

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.

World Autism Awareness Day

Well, here it is, World Autism Awareness Day again, and I don't have a single WAAD card out.

I did a quick look today to see what kind of events are planned for today. As I kind of half expected, I didn't really see any that were FOR autistic kids or adults. Lots of fundraisers, walks, lectures, etc. But not something I could take Janey to. I am grateful for the awareness, for the research, for all of that. But if it's autism AWARENESS day, perhaps it would be a good day to expose people to actual human beings with autism---to let them see what autism actually is and isn't. I had ideas like having restaurants have a special time, from 2-4pm or something, where they would just for that day be autism-friendly, and you could go there and not feel worried if your kid screamed the whole time, or spilled water, or ran around. You could just sit and eat a meal among other families with autistic kids, and smile at each other, and enjoy being out. Or another idea---places like indoor gyms or pools could have an autism time every April 2nd, so you could get some family recreation. Or maybe somehow there could be highly staffed parties for JUST the kids, so you could drop them off for an hour or two knowing they were doing something special and fun, while you got a break. You know, sort of like how parents of "typical" kids can sometimes take their kids to birthday parties and LEAVE them there and get coffee---that kind of luxury treat for everyone!

But those are dreams. I have to be content that Janey is living in a world that certainly IS more aware of autism than a world 20 or 40 or 100 years ago would be. I am very lucky that way. People know what autism is, kind of, even if they haven't met a lot of people with it.

I'm thinking of ways myself I can actually live up for the name of the day. How I can I make people more aware of autism? One thing I try to do is tell people Janey is autistic. I like to do that for many reasons. It explains her behavior, it lets people know she isn't just being rude in not answering them and it lets them meet someone with autism. It has worked well for me overall. There are quite a few stores where Janey is known, and I feel good about that. This blog is another way---I try my very hardest to write honestly here---to bare my heart about Janey, not just the bad but the good. I wonder if I show the good enough---that's a part of autism I want people to be aware of to---that Janey is a delight often, that she is fascinating in a lot of ways, that I love her intensely and I always will. I want to give some hope to other parents with newly diagnosed kids. But I don't want to lie. I don't want to say it's better than it is, I don't want to be all sunshine and flowers. I want to be honest. I can also encourage my sons to talk about Janey. I sometimes suggest her as a topic for essays at school, or tell them to not hesitate to explain to friends why sometimes they prefer to spend time at other people's houses instead of having kids here. I want them to be proud of her as a sister, but to also let them know it's hard, it's something THEY should be proud of themselves for---being good brothers to her.

And so awareness is a good thing. But I wish this day could somehow also INCLUDE those with autism, instead of just being ABOUT them.