As Olivia’s daily life becomes more structured, and the boys are doing well in school, I seem to find myself more relaxed. This means I’ve taken up some new hobbies, but it also means I have more time to read things I’m interested in uninterrupted and of course react and form thoughts around those things. As a result I’m able to give you lovely people more content again.
Today I’ve been reading more about Steve Silberman’s Neurotribes (not an affiliate link and I have not read it yet). As a result, I’ve also been reading comments again which I know I’m not supposed to do. In a certain post basically damning Steve’s book (which was then reposted on AoA, ugh), I read as parents misunderstood a key comment that Autistic people and Neurodiversity proponents keep saying.
“The services they need”
So it’s said over and over that Autistic people, autistic children, adults, the parents of autistic children should have access to services they need. A lot of parents seem to be hearing this as they haven’t done enough services, but I wouldn’t consider that to be entirely accurate, though it can be.
Last week I went to an event sponsored by a local autism group and had several glorious hours relaxing, kind of. Okay, it was mostly relaxing, until I heard the other moms speak and tell someone their child “needed” 25 hours of services. Then it became less relaxing as I hit my wall of social interaction and then subsequently hit my wall of sensory stimulation. But that’s really not here or there.
What this mom neglected to talk about was what kind of services this mom of a newly diagnosed child needed. Even if she had, I don’t honestly think that her recommendations would have been accurate. The key to services, any services, is targeted services that are person- or family-centered and are solutions to functioning.
Several years ago when I presented at the Autism Society conference, I described my kids and asked the audience if it sounded like my kids were “high functioning”. Indeed, that is the impression that people got. Now, if you want to put labels like high and low functioning on a child (and I understand to a point why you would though it will never accurately describe what their impairments are), my kids are now to a point that most people would never ever consider them to be low or even moderately functioning. But that wasn’t always and it does not mean they don’t have a whole host of impairments. And we continually work on those areas.
Really, the crux is targeting those impairments. What is it that you want for your child’s life? Where do you want them to live? Do you want them to be able to pay their bills? Do you want them to be able to choose what they want to eat? How about how they get around? Do you want them to graduate from high school? Do you want them to communicate? These are all serious questions and it’s important to know how to get there. Luckily there is no right answer, but that doesn’t mean there aren’t wrong answers.
This is what I’m talking about with targeting interventions, services and solutions. Because all the services in the world are not going to be enough if you don’t know where you’re going. So you want your kid to stop having meltdowns, that’s not going to happen. I still have meltdowns. But do you want them to learn to handle frustration? Do you want them to be able to tell you what’s going on? What is your plan to help them get there?
I can’t tell you your plan or what goals you should be working on.. Well, I might be able to if I knew you and your child and all that good stuff. And that’s what people are referencing when they say to ask an autistic person. I think you don’t necessarily even have to ask an autistic person. Sometimes another parent is enough, if they’re solution focused. Sometimes case managers are a good place to turn.. Or a psychologist, teacher, occupational therapist. Heck a good friend or family member even. Just take a notebook and on each page write down what it is you want for your child. Then think, really think for each one, what’s stopping your child from doing that. And not just into next year, or the end of elementary school or whatever, but what you want each step of the way.
My goal for Daniel is to graduating from high school, with a diploma and get into a technical school or community college. I want him to be able to take the bus to and from wherever he wants to go. I want him to be able to get his own groceries, cook his own food and eat it in his own apartment. I want him to be able to clean his own dishes and his own laundry and to take care of a pet. And at 11 yrs old, he can clean his own laundry, pick out food at a grocery store given money limits and if it’s microwavable, he can cook his own food. I’d say he’s well on his way and if he surpasses my goals, I will be happy.