Susan's Blog

Friday, August 3, 2012

Autism Mommy Swami #15: What would I have done differently?

Dear Swami,
Just read you FB post about hoping for the best, preparing for the worst and I knew I had to write you, even though I feel ill just typing this and am filled with dread.  My daughter is ten, reading, writing and typing at a first grade level, (though this is a woefully inaccurate way to describe her abilities.)  I have largely ignored the idea of preparing for her future, have my head firmly placed in the sand, too busy with just getting through the day, forget thinking and preparing for when she becomes an adult and quite honestly feel sick to my stomach even thinking about it!  So here’s my extremely reluctant question to you – What would you have done differently in preparing for Nat’s future, knowing what you know now?

–A Mom

Dear A Mom,

First of all, I don’t believe that you do have your head in the sand because of the very fact that you’ve asked these questions. It is difficult enough for autism parents to deal with the present. Dealing with the future — well, that’s a horse of a different color, as they say in  the Merry Old Land of Oz. But you are not in Oz, just like you’re not in Holland, or Italy, or Mars. You’re here on earth with a kid who has many needs, both special and not so. And you must, absolutely must, think about her future. That is the most basic point of our existence: to survive, and to carry on the genes.

And so, sooner or later, we have to plan, to think ahead. You ask what I would have done differently, though, and so you are asking me to go back to the past. The Swami is so much better at past than future. No one likes to beat up the Swami over past mistakes as much as she herself. So thank you for the opportunity, here I go.

What would I have differently? That’s easy. I should have been happy. Aside from all the other concerns that I will get to, being happy, enjoying the present with Nat and myself, and the rest of us was the paramount item on the agenda. The truth is, no matter what is going on, this is it, this life is all we’ve got. I’m a Jew, and so I do not believe in an afterlife, heaven, hell, limbo, reincarnation. I don’t put anything off, and that is because of my innermost beliefs.

Living in the now casts a glaring light on everything in ones life. You have to see it all for what it is. There’s no hiding. But this doesn’t mean that there’s no hope. There’s always hope, there’s always stuff that gets better. It’s just that you can’t live for that.

When I look back at every turn in my road with Nat, I wonder, “was that when I should have…?” But knowing who I am, what I know, the answer is, “Nah.” Because I always did my very best. I never gave up. Would being more consistent in Nat’s home programs have made a slight difference in his functioning levels? Would a gluten free diet have cleared his mind somewhat?

What the F does it matter? How can you go through life measuring everything? Why must all progress by quantified in order to count? The decimals in your bank account. The digits in your IQ. Your SAT scores. The number of letters after your name. The number of crosses you have to bear. All of that is a distraction from the moment. A moment in your finite life when you could have been happy.

Sure, you all should

1) see special needs consultants to determine the fiduciary aspects of your child’s future. You should

2) be on first-name basis with your state department of developmental disability. You should

3) be familiar with how to bug a state representative to sign onto one bill or another. You should

4) be thinking about who else can assist with your child’s guardianship way down the road, aside from or along with you. You should

5) be cultivating a special needs community of peers that your child can socialize with, perhaps live with. You should

6) be finding out about eligibility for SSI and Medicaid. Or SSDI. You should

7) be studying your child to discover what he/she likes to do and is good at so that you can help her come up with a job or career one day.

You should not be ruling out anything like work, college, marriage, fun.  Especially fun.  Did I mention Special Olympics?

And so A Mom, I don’t know what I really should have done differently, except that I wish I had relaxed a lot sooner and just smiled and enjoyed my life and my sons more.  It’s as simple — and as difficult — as that.




You’re so right about “This life is all we’ve got” and we need to take joy in it “as it is” in the now. That is the hardest thing to put into practice. My son is 18 and I know I didn’t fully experience many things when he was younger because I was so wrapped up in my fears and worries. But even after all these years, it’s still hard for me to focus on the present and to learn that lesson. Thanks for the reminder to cherish each moment for what it is! Another way to look at it is: Did worrying ever change anything for the better? 🙂

— added by Louise Kinross on Friday, August 3, 2012 at 10:56 am

Jonathon – Autism’s Gladfly – had a post a few years ago about how parents of severely autistic children should spend less money on therapy and more savings on for their adult care. At the time I went… Huh!!!… At nearly 11 I’m going.. DUH!!!

Yes, for the eldest, the mild one, the one that had a chance at an independant life – the therapy dollars were well worth it. The younger one, I admit I haven’t paid out the money for. I’ve done it myself. He’s doing very well – well above what they testing says he should do – but I’m only aiming for Gr 3. Gr 3 will give him the ability to read – which he does at Gr 6 level – spell – ditto – math – Gr 1/2 – and comprehension – 1. We know he understands more but we’re talking about proof not assumptions.

I want a good life. One he can take part in – we went and saw Charlie Brown live in theatre in June and he LOVED it and he wanders around the computer/internet easier and faster than you and I do, plays age appropriate DSi games and draws amazing logo’s and animates/sounds them on the DSi – go places, make his own sandwiches, learn to drive the gator/tractor, and enjoy his swimming pool. But at the same time, qualify for the care he requires and the ability to live with care away from home.

It’s taken a long time to accept it. It hasn’t stopped my 30min a day on non-school days homeschool b/c we’re aiming for Gr 3. But I’m not losing sleep over what “might be” anymore. I know where to find what I need at 21… and that’s what we’re aiming for.

— added by farmwifetwo on Friday, August 3, 2012 at 4:30 pm

I completely agree with your advice to enjoy life now. I spend so much energy worrying about how to keep the twins safe… window guards, an iron gate in front of our door, advocating for more paras. The only way I can deal with this is to enjoy every day with them as much as I can. I can never guarantee that they won’t someday run into a road or get into a pool or lake on their own. I could definitely go crazy worrying about it, though. They are so filled with joy and music and life, and I don’t want to look back and think all I did was worry.

— added by Alice on Friday, August 3, 2012 at 5:52 pm