16 years later

By Holly Bortfeld

My son Max was diagnosed with autism 16 years ago today, May 4, 1998. I have been mulling around in my head for a few weeks how I wanted to mark this anniversary of autism entering our lives and had drafted a blog but I didn’t like it. I kept poking at it and it didn’t get better. Just sadder. More bitter.

I was focusing on “lessons learned” in the autism community and frankly, it was just depressing. Little has changed for the positive, many things have gotten worse. Incidence has risen, funding has gone down, there is still a media blackout of the reality of “real autism”, our government hasn’t done anything, waiting lists are longer, services are cut everywhere, and our kids are still neglected, abused, bullied, sick, wandering and dying. Parents are still broke, exhausted, marginalized, heartsick.

I thought I’d take a break to clear my head and come back and take another run at it. So I went out to the garden with my son to do a little work as planting day is just 2 weeks away. Instead of focusing on the salient points of failure in our community to make the blog better, I focused on watching my son work independently, from across the yard, to unload 1000 pounds of manure into the garden. I watched him take the 50+ pound bags, place the bags around the garden, open them, dump them out and throw the empty bags into a garbage can. Then, he got the rake and spread the manure out, put the rake away and put the garbage can back in the garage where he got it from. I cried.

It’s stupid, I know, this crying over yard work. But I was transported back to sitting in his IFSP meeting when he was 2 years and 9 months old and they promised me he’d never be able to do this type of thing. I remember listening to them putting limits on this baby, my baby, based on their considerable experience. And had we not ventured into biomed, they would have been right. This same team had to scramble and revise IFSPs and IEPs after we begun biomed and they saw the drastic changes. I cried then too.

After the most vicious “Autism Awareness Month” ever, we’re all fatigued and just want to hide, so let’s talk about a few things that have changed for the better instead.

Posting on Facebook, Twitter and Yahoogroups, I see tidbits of hope, kids getting better, doing small things, and big things, more often. Doing the things the parents were told their kids may never do. Their kids are beating autism’s limits and raising the ante, and I love it. There’s even a hashtag for it – #FUA (F*** You Autism) which celebrates this progress, big and small. Sometimes I read the posts just for good news, even though I don’t know the people posting about their child’s progress. It’s better than watching network news, for sure!

Research is finally catching up to what parents knew 15 years ago, although they shamefully call it “groundbreaking” when they publish it. Whatever, we’ll take the validation that we weren’t the “crazy parents” that we were often called. We did not take wild risks, we took calculated risks based on research, test results and probability, and now the scientific community is catching up.

Families are creating jobs, farms and homes for their kids without relying on the government to do it, because they know it will never happen if they wait for “someone else” to do it. These are jobs and homes with humanity, dignity and safety, because the families created them.

Employers are starting to see the benefit of hiring people with ASD, which will hopefully bring down the horrible rate of unemployment in our community.

Technology is enabling people with autism to communicate and advocate for their needs. The use of iPads and other touch devices with a myriad of great apps and Rapid Prompting Method are giving voices to the preverbal in staggering numbers.

These are all great things and as terrible as April was for many of us, it’s over and we’re back to work. We’re parents, we don’t have a choice. We will not give up, we will not give in. We must tell our truth, out loud. We must give hope, we must give help. And the next time you are feeling stuck or down, go outside and get a new focus. Even if it makes you cry.

Photo Caption: Max across the yard working independently, you may have to squint as he’s far away!