I have two young children. My son has an autism diagnosis (PPD-NS) and my daughter, aged 3, is going to be assessed for similar developmental issues in a couple of weeks. The surprising thing about having autism in your family, though, is not that it’s totally devastating or disappointing. Okay, to some extent, sure it is. As parents we all want to have the child who is a baby einstein (for heaven’s sake, there’s even a brand!), a kid who’s always well behaved, respectful, gregarious, etc. To have a child with autism means that you have to deal with meltdowns, odd behaviors, etc, at least for a while, as you and your child learn to cope, to redirect, or even just anticipate stressful situations.
The worst thing about autism, though, is actually the battle of wills you engage in with various organizations established to support special needs children. Every organization from government funded special education support groups to privately operated companies providing behavioral therapy that’s paid for by medical assistance.
The last three weeks have been a total whirlwind for me…and a very dramatic learning experience. I found myself battling my local IU, threatening legal action when they were reluctant to support my son with much needed speech and occupational therapy. Immediately after that, I found myself doing battle with the company providing his ‘wrap’ services, the teacher support person and the behavioral specialist assigned to his case. That situation peaked with a call from the CEO of the company…on a Saturday…with the woman claiming not to know anything about the situation, at that point very tense, and then fishing for information. Yikes.
Winding down from this situation, though, I think the most important lesson I’ve learned – largely thanks to my awesome Lancaster County Autism Mommies advocate – is that you have to know your rights and hold your ground. Special needs parents apparently cannot assume or generally accept that service providers are actually going to support their children, either. Sad, but true. You have to be on top of the situation. You have to add to special needs project manager to your job description.
Kicking some serious ass in the process, though, doing battle with anyone and everyone who holds your child back, the good news is that you really can come out on top. The law is on your side battling autism – your child needs support they are entitled to it, end of story. And thank goodness for that, and for people who advocate for children with special needs (and their parents), because the system feeds on ignorance. Sure, money is an issue. Now, probably more than ever, but families face this struggle day to day. I know I’ve been there, when you just have to buckle down and go to work to come up with the money you need. As a single parent, I find myself doing that a lot. And I manage it. Countless others manage it. The government needs to take a good long look at their spending habits anyway and then go to work to make more money to support these things that really matter – the education and support of special needs families.
Suffice to say the last three weeks – the outcome, I should say, of those weeks – has left me feeling empowered to actually battle autism on its own terms. And I think it is with the government and the school system that you have to be prepared to struggle, albeit as politely as possible, since these are the things we have at our disposal, as parents, to actually combat the diagnosis itself, to parent our children and get them the opportunities they want and need to excel.
Anyone in Lancaster County, checkout Lancaster County Autism Mommies Website because this is a seriously amazing support group for ‘autism mommies’ and just about everyone else impacted by autism. Even if you’re not in Lancaster County, the resources you can access from this site are pretty tremendous.
