Susan's Blog

Monday, March 6, 2006

Questions I Am Asked

I did a reading tonight and had a great time. I always do. I have never enjoyed anything as much as going around and talking about my book and my family to people. One of the best things about it is that people are so receptive to how I’ve written it and what I’ve got to say; it is extremely rewarding. The other wonderful thing is finding so many kindred spirits out there. It is tremendously validating to meet people who have gone through what I did and to hear about their kids.

At my events, I often am asked similar questions, which I want to list and answer here:
1) How do your two other boys react to their older brother and his autism? How do you balance their needs with Nat’s?
Everyone gets to have their feelings but must be sensitive in expressing them. But Max and Ben react very differently to Nat and autism. Max grew up with Nat, has always known Nat to be the way he is, and is a very centered, compassionate person to begin with. An old soul, he gets it. Ben is a very different kind of guy. Very black and white in how he thinks, to him a big brother should act like Max, not Nat. We are helping him articulate his feelings, but we also set boundaries (we don’t let him say mean things to Nat in front of Nat or Max).

We balance their needs by individualizing our attention. We spend time with just Max and Ben, or just Max, etc. We use sitters to accomplish this, if we have to. But quality time can mean a lot of different things: 5 good minutes of conversation with Max; 20 minutes of Legos with Benj; reading with Nat. We also try to keep things fair, and have each boy do chores, so that no one feels like anyone is getting a free ride.

2) How do you have any fun? As a couple?
We get out every so often, even if only for an hour. We create “bubbles,” little moments in time where we are not solving anything, or working on anything, but simply being together. We stay loyal to each other, by honoring the other’s strengths and dividing up the kid-labor. I’m better at the school and doctor and home interface; Ned is better at the community interface (taking Nat out into the world). We also pick and choose how we spend our time; we don’t do everything we would like to do: we don’t travel a lot, we don’t entertain a lot, but we do go out every now and then with friends or with each other. Above all else, we laugh — mostly at our kids.

3) What therapies/interventions do you recommend?
For us, medication targeted at certain difficult symptoms was effective. We use behavioral techniques for teaching Nat certain skills, and more and more we talk him through difficulties (we get him intensive speech/language therapy) and his language continues to grow. We find that sports and social groups are the best therapies for Nat. These are natural ways to teach him about the world and they are fun for him. It is good for his brothers to see the things Nat can do, such as running and swimming for the Special Olympics. We do not use biomedical interventions, but know many who have alleviated certain symptoms that way. We are not looking to cure Nat of autism, but rather, to help him be the best he can be. Same with my other two boys.

4) What is the hardest thing for you?
Going out in public with Nat has been very hard from time to time because of potential tantrums. But we do it anyway because it is good for him and good for the world. The hardest thing now is wondering if he’ll be okay as an adult, and what will his situation be when I’m gone. I’m doing everything in my power to make him independent, but who knows?


For the last six months, I have made public outings part of my “therapy” package for Jakie, as well. We had to start small – a quiet sandwich shop that he gradually became accustomed to. Then a back room in a larger restaurant. Last week, I went all out and took Jake and his sister to a free Navy band concert. I figured that for free, I’d have nothing to lose if I had to leave. We sat towards the back, near the exit…just in case. And he LOVED it! Bounced up and down in his stroller the whole time, moving to the beat.

Keep up the good work! Our kids belong in society…even if we have to teach that fact to society!


— added by Susan on Monday, March 6, 2006 at 11:14 pm

Excellent, thanks for sharing!

— added by Steve Sherlock on Tuesday, March 7, 2006 at 12:58 pm