We're always told to look to our elders for advice. We're supposed to take it firsthand from those who've "been there, done that." But when you have a child with autism, it often feels like you're making your way through an endless dark tunnel with no Yoda to guide you.
Where are all the wise elders when you need them?
Well, they may be few and far between, but they are out there. I know this because at the recent Autism Symposium in Toronto I sat in the same room as three incredible moms who've raised three incredibly different children. Jennifer Kumins, The Honourable Helen E. Hoens and Ms. Eustacia Cutler -- better known as "Temple Grandin's Mom" -- respectively, an author/educator, a Supreme Court judge and a Harvard graduate.
Between them, their shared wisdom spans decades. I don't for a minute envy what it must have been like having a child on the spectrum in years past, when awareness and acceptance were scarce and the pat response from clinicians was to put your child in an institution and throw away the key.
We're talking tough-as-nails women, veritable mama bears who by necessity learned the real meaning of patience and compassion. Values that, according to Hoens, her son, Charlie, taught her -- not the other way around. One child tore out clumps of his mother's hair; another smeared feces on the walls... Though the stories these moms told were sometimes painful to listen to, and though they were stories that would horrify most parents, I recognized a bit of myself and my son in all of them.
We know that autism comes in a spectrum. Not all children will grow up to hold doctorates or become respected speakers, like Temple. Some never utter a word. Sitting before such shining examples of advocacy was humbling, to say the least. Their lives were as different as their children, yet at the core their wisdom was the same:
1. Worry about today and only today
"Give us this day our daily bread," quoted Cutler. And it's true. The Lord's Prayer holds no mention of yesterday, let alone tomorrow or even next year... Just get through this single day, one hour at a time. One breath after another. On the bad days -- and these moms have seen many of those -- this mantra is nothing short of sanity saving.
2. Love your children for who they are right now
Our kids may have autism, but they are all individuals. Their goals and personalities are varied and ever-changing. Celebrate everything your child accomplishes, whether it's zipping their coat or going off to college.
3. Do the best you can...
Because the best is the best you can do. The most we can do for our kids ultimately is help them child cope in "an imperfect world." Do what you can to educate others about autism then, in the immortal words of a Frozen character, let go.
4. Don't forsake yourself, your partner or your other children
Autism tends to suck up all our energies as parents. Don't lose sight of your identity or that of your other children. They need to feel valued in their own right, even if it's only putting aside 20 minutes of time to connect with others or yourself. It's only when you feel nurtured that you're well placed to nurture your child.
5. Pace yourself
As Hoens points out, autism isn't a sprint or even a marathon. It's more like "a weird version of the Iron Man." There is no finish line or trophy at the end. In fact, there is no end per se to autism. The challenges keep coming, thick and fast. So you need to stay positive and above all, hopeful, in order to meet them at every turn.
Though sage and entertaining, these mothers didn't have all the answers. Or rather, that the answers can only be found once you call off the search. Yes, I think Yoda would approve of that.