16 years later

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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.

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

10 Comments Add yours

  1. Karen Larson says:

    First, why was this a vicious autism awareness month? and what is biomed? I am full time caregiver of my 9 year old grandson with autism, ID and many digestive issues. I also live in the small town of Walla Walla WA where there are few resources, however we have found some things that have helped Robert. I am interested in knowing about this biomed which helped this woman’s son

    1. Holly Bortfeld says:

      Hi Karen, biomed is short for biomedical, which basically means treating autism functionally by testing to see what may be wrong, or working improperly in the person with autism medically, then treating those issues. For instance, more than 70% of people with ASD have treatable gastrointestinal disease, which causes pain and therefore aggression or self-injurious behaviors so when we treat these co-occuring conditions, the amount of behaviors and pain go down and allows our kids to learn and grow properly. Here is more info about biomed – http://www.tacanow.org/wp-content/uploads/2013/02/starting_biomed_webinar_updated.pdf

  2. I love the story about your son gardening, doing the things that were predicted he’d never do. Your son is not a statistic. He is a human being and I know that the support of the community of parents of kids with ASD must help (the community you choose). I taught kids with ASD who beat all expectations and still do! Dealing with devastating situations in my life has taught me that we have every right to our pain, and every right to celebrate success. I wish you and your son ALL of the very best.

  3. Brandi Picardal says:

    Love the post!!!
    I rarely have time to read the posts, so I thoroughly enjoyed it.

  4. This is an amazing post. You are so honest. You made us cry – but a good cry! We will re-blog this and put it on our Facebook. Thanks for taking the time to write this. Leah and Molly

  5. Reblogged this on A Ventography! and commented:
    We thought this was a great post about reflecting on autism after living it for 16 years. The author gives an honest look at what it’s really like to deal with autism.

  6. Brian says:

    Long time reader – first time commenter… thank you for taking the time to write and share this. It gives me increased hope for the incredibly special young person in my life who is fighting every day to exceed similar (supposedly unreachable) milestones. I pray that God will work through people like you who are willing to share their (personal) stories.

  7. Love you Holly! I love that you care so much, help so many and continue to work so hard. Thank you!

  8. Jani says:

    So powerful. Thank you.

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