Susan's Blog

Tuesday, June 19, 2012

Autism Mommy Swami #10: When is it enough?

Dear Swami,

When you have a child that is more severely affected by Autism, how do you determine how much therapy your child should receive and what is just too much? My son, Henry, is 6 and non-verbal, and though he has been in school and therapy since age 3, the approaches that have helped so many other little ones we know have largely not really helped him. He has learned many things over the last few years, but continues to make very slow, steady progress seemingly regardless of what services he is receiving. Do we keep adding more services or let him be sometimes? And, how do you let go of personal guilt and feelings that you aren’t doing enough?

Also, how did you navigate the school system with Nat? Did you keep him in public school or go private? I feel like our public school means well but may not be fully equipped to handle Henry, yet I don’t want to take him out of the community. Did you ever do periods of just services at home or did you keep Nat in the system?

Thank you.


Dear Lori,

My goodness, the Swami’s bejeweled head is spinning from the thought-provoking questions! Let me start by telling you that ultimately the answer is going to come from your own heart, gut, and head. But the Swami always has an opinion and experience to conjure up, and so I will do my best. So you want to know how to judge that you have done enough in terms of therapy for your guy. But what I really think you are asking is for permission to slow down. Permission, also, to have certain feelings of tiredness, disappointment, discouragement, and all the other ugly things we don’t want to feel.

Let me pick the low-hanging fruit first: what do I do about the guilt that I am not doing enough? I don’t do anything about it except feel it and listen to it. I try to figure out if there really is something left to be done, something that needs action that I haven’t taken. On Sunday when I dropped Nat off at home I was overcome with sudden remorse. Why was he living there? Why was he not smiling when I left? Is there something I should look into, check about staff or anything else? Was everyone taking good care of him? What kind of mother drives off and leaves her son to live with others, and can’t know how they really treat him?

I went over all the evidence, all that I know to be true. Nat told me to “go home.” Nat says he likes it there every time I ask, even when I ask in different ways. He has had multiple opportunities to let me know somehow if this is not good for him. And he has not.

What’s going on is my own sadness and perhaps guilt that I can’t keep him home with me. This was the choice my husband and I made, and it was not a perfect choice.  We had to weigh everything: Nat’s anxiety in our unstructured home; my other two sons’ anxiety over his unpredictability; our need to have some respite sometimes; Nat’s need for his parents’ love, that no one else can give him; Nat’s need to learn independence; and Nat’s chance to be more comfortable, with a new, structured life.

As I went over this in my car, I heard something that cut into the morass of uncertainty: You did the best you could at this point in time.  Live with it, you did your best. And it’s not so bad.

Is there a way you can tap into your own evidence about your son’s progress? You feel that all of this high-energy effort may be leading to slow and steady progress, and his learning many things. That is no small accomplishment. Progress, fast or slow, is what you want. I’m sure he himself is trying his hardest to learn, to make sense of the world, to please.

You are wondering if you need to add even more services. You also wonder how I navigated the school system. Nat was sent to a private placement not too far away, and was in private placements pretty much his entire school career. Our school system supported that move. I mourned his loss to the community, but we doubled our efforts to take him everywhere and make him well-known in town and in our neighborhood whenever he was home by taking walks with him and going into restaurants, coffee shops, ice cream parlors, the bookstore, the supermarket… He was included that way. He participated in the local Special Olympics teams and got to know other local kids. So you see being in the school building is only one way to do it.  I did also have home services and tutors periodically, but he was always in school. Although I believed I wanted to homeschool him, my husband knew me better than I knew myself, and told me I probably would not like it in the end. So we supplemented regular school with home tutors after school. But not always.

The deepest message here is that with autism — and probably with all parenting — you have to make your own rules, set your own goals. You look at your kid, not others, and you figure out your priorities. What we did in terms of adding or subtracting therapies and services was to choose what we thought we could and should do more of, and also what we thought we could jettison.  Sometimes we pushed for more reading support, more speech therapy. Months or a year later we’d decide this or that needed to be tweaked or dropped. Sometimes our goals became clearer and we knew just what to do. The best thing that ever happened to us was Special Olympics, because that killed many a bird with one stone: with Special O, Nat became more social, more communicative, more athletic, more independent — and it all happened naturally, not in a therapist’s office. For us Special O took the place of therapies. Special O, and then once he was 14 or so, voc ed. Real and pragmatic activity spoke to Nat, fit his interests and skills. We stopped looking at him as a receiver of therapies, as a board to be written on, as clay to be shaped. We started to see him more, and felt that maybe, just maybe, his stims were interests and could become more like hobbies. His fast, circuitous walking… that eventually meant he could be a runner, a ball player. His need to line things up… well, now he puts away shopping carts at the supermarket for a living. His need to be with people without talking to them… that became Nat the partygoer, the social group maven, the desirable teammate.

You gotta decide, do your best, and then let yourself off the hook — provided he continues to progress. Looking at him, really seeing who he is, what he is good at, what he likes — that is how you will judge what more to do and what progress means for him.





You were with me on Sunday oh Swami.
We’re sending Ben to camp. It’s at the JCC in an open hearts open doors program. My Ben will do everything the other kids do, with the aid of a 1:1. My cost is no different then other campers.
Ben has not wanted any part of camp. We introduced him to his advocate, went to both open house days to familiarize him, and spoke VERY positively about camp often.
Still… Sunday he cried. He cried at the open house, and that night, while I read his books, his gorgous eyes welled with tears, and he said “No Camp”.
My husband was upset, but the words of Swami came back to me, and that’s how I comforted the husband. We did the best we could. We did everything we could think of to make it a positive transition, and now, we just have to hope for the best.
Needless to say, Ben came home yesterday with the advocate writing he was smiles all day. This morning, we told Ben it was time for camp, and he grabbed his bag, and went right to the door.
Thanks Swami!

— added by Jacquie on Tuesday, June 26, 2012 at 2:21 pm

And thank you, Jacquie, for making me feel like I did something right, too! 🙂

— added by Susan Senator on Tuesday, June 26, 2012 at 3:09 pm

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