Susan's Blog

Sunday, September 30, 2012

Autism Mentoring

I ran into an old friend today at my gym. I almost didn’t go, but it was raining, and I needed some kind of exercise. I’m so glad I went. This is someone with whom I’d had a falling out, but I found when I saw her, that had disappeared and I only loved her once again. A (Jewish) New Year’s gift to me.

She gave me an idea, which is that there ought to be autism parent mentors, a whole international network of them. When your child is diagnosed, your doctor could hand you a packet of info — all the stuff you need at that awful moment — and in it could be the website for AutismMentor. (Wow. I am so old, I still think in terms  of my doctor handing me a paper packet, rather than just googling autism…)

Your autism mentor would be a seasoned parent. Not necessarily an old parent; someone who is tempered steel, new or lovingly but heavily handled over the years. The requirements would be that this parent would have reached the phase of Acceptance; that he or she would have gone through several IEPs, and ideally would be at least a teenager. You would get to pick from a range of experiences, places on the Spectrum, gender.

The way it would work is that as soon as a parent can draw a deep breath, look beyond their present turmoil, and maybe smile, they can sign up to be an autism mentor. If they have realized fairly consistently that crises do pass, that their child will grow and develop but not necessarily according to The Book (how I used to hate that book, you know, the one that shows you the one way a child develops, and only mentions autism omce in the index, under “signs of trouble”), and most of all, if they enjoy their autistic child, they are qualified to be autism mentors.

Anyone know if the domain name is free? Seize it. Do it. It would be a huge mitzvah to the next generation of us, a brilliant start to to the New Year.


They have a similar program that they offered me in the Autism Society of Maine. Its sort of a parent to parent support network. You fill out some info and they match you according to age of your child , contact preference and geological location. Its a nice program, it was offered to me but I didn’t take then up on it.

— added by Melissa M on Sunday, September 30, 2012 at 8:53 pm

Why didn’t you?

— added by Susan Senator on Sunday, September 30, 2012 at 8:58 pm

The Autism Mentor list should also make sure to include those parents *who* *are* *themselves* *autistic*. (Yes — quite a lot of us adult autists have children: kids on the spectrum, and/or kids off the spectrum.)

— added by Kate Gladstone on Sunday, September 30, 2012 at 9:14 pm

Kate, that’s what I said in an earlier iteration, but the thing is, I figured any parents who fit the bill of acceptance would be great, whether on the Spectrum or not.

— added by Susan Senator on Sunday, September 30, 2012 at 9:28 pm

To be honest, Susan, you were/are my autism mentor! Making Peace With Autism was a perfect dose of optimism and reality for me and I’ve often saved and printed out your blog posts that really spoke to me. I think that finding people who have come to some sort of acceptance is the key to a mentoring relationship. For me, the mentorship is more about dealing with the emotional side of parenting a child with autism, rather than specifics about navigating the world that you must now face (treatment, IEPs,etc.) I have always appreciated that you aren’t trying to oversell your struggles or your celebrations.

— added by Suzette on Monday, October 1, 2012 at 1:14 am

This is a FANTASTIC idea! There is something sort of like this in Arizona.. it’s called Raising Special Kids. They have a training program for volunteers, etc. I went through it in the late 80’s. Now I mentor informally and through my books “It’s All About Attitude: Loving and Living Well with Autism” and “Breathe” 52 Oxygen-Rich Tools for Loving and Living Well with Autism”.

But it would be so cool to have a world wide mentoring program that was more for emotional support than specifics as Suzette says above. And specifically for autism!

I agree, a brilliant start to the New Year!


— added by Gayle on Monday, October 1, 2012 at 3:48 pm

Shana Tova from another “older” Mom. I’m the mom of 3 boys on the spectrum – Ages 29; 23 & 21. I have been thru it all – there wasn’t any mentoring back in 1985 here in Calgary, Alberta. We have been thru everything and back – all our boys are different. It took me about 20 years(give or take!) to reach an acceptance phase. I can remember the feeling when I finally got there – it is quite wonderful. My boys are good; their sister has survived and is a remarkable young woman; I am still married to the same guy and we have a terrific family.

— added by Barb on Saturday, October 6, 2012 at 1:39 am

I wish 15 yrs ago I had this! Could not find much of anything back then. I tell parents now at least there is information. It’s a great idea, when I’m finished with my MSW, I could consider it.

— added by Corie on Wednesday, October 17, 2012 at 10:18 pm