Susan's Blog

Saturday, April 3, 2010

Whose life is it, anyway?

I’m realizing that when you are a parent, you not only have to live your own life, but you kind of feel like you have to live your child’s life, too. When Nat was a little guy, and all throughout his school years, I was never satisfied with the communication from teachers. It seemed that in the communication notebooks, I always read, “Great day,” or “Did all of his work.” Sometimes, during the more difficult phases (February and November, when he would become unhappiest and aggressive — can you blame him? They are the barfiest months of the year.) I would get “No issues.”

I often devised little check-off sheets for the teachers, that took stock in what I wanted to know, such as, “who did Nat play with or talk to?” and “what book did Nat look at?” It was more work for the teachers to have to answer these questions daily, but I needed to know these things because Nat could not tell me himself. This little aid gave me a little more of what I was seeking, to be a fly on the wall of Nat’s school life, and I have to say that every single teacher not only used my little sheets, they were happy to. (To this day, I truly believe that people go into the service professions, like teaching, because they care about making a difference. That has been my experience, by and large, with 17 years of Nat in schools).

And still, it was not enough. There was just more, more, more I wanted to know, but what, I can’t say. That inarticulable longing, the yearning of a lot of autism parents is as strong, or stronger, than any other emotion they’re dealing with, I would bet.

One of the rare times that I was not happy with a school’s treatment of Nat was when he was around six. (and I am not including in this recounting that terrible horrible year when he was ten, and expelled from a school program. That one, that “special education collaborative” does not even count as a school program. That one is off the charts terrible and as my grandma would have said: “a curse on all their heads.” I fart in their general direction. I salt their earth. Unfortunately most special needs parents have one of those wedged into their memories like an evil splinter. No, I am talking about all the other normal, hard-working, lovely staff we have ever worked with at all of Nat’s other school programs.) But when Nat was around six, he developed his “silly talk,” or self-talk, and it completely freaked me out. What was this? I wondered. What were we supposed to do about it? Up until then, our only real problem with Nat was that he was utterly disengaged from us, for the most part, and very stimmy. His language had always been odd, developed from passages from books he loved. Charmingly odd. But the self-talk! That was not charming.

The school’s solution was to gently interrupt Nat and “give him something else to say.” This was one of the first times (of many) where suddenly the weight of Nat’s entire future crashed down onto my shoulders. Not like when they are babies and you know you are the one keeping them alive, basically. I mean that the message I got from the school was: if you don’t keep this up, he will be more autistic. One teacher even said to me, “however much more you can do for him now, he will be that much more capable later on. It’s your choice.” Or something like that. The way I heard this was that if I were to employ — around the clock — the techniques I had learned from the school, it would make Nat de-auticize (NancyBea’s fantastically apt term). I was now to think of things for Nat to say — and constantly, because he was doing his self-talk constantly — as well as things I wanted to say.

So here’s the formula: 1 autistic Natty + 1 mother (living her life+Natty’s) = 1 cured Natty.

But I am terrible at math. Over the years there would be many other such messages I would get, and I pretty much did them all, half-assed, tiredly, sadly. If I only had tried the diet a little longer, a little better. If I had only gotten him in the queue for Secretin. If I had driven that hour each way for the Auditory Integrated Therapy. If I had tried, just tried that drumming thing. If I had kept up the SI therapy. (If I had found a way to prevent him from attacking his therapists, he would have kept that one up.) If I had sat with him every single time another kid was around and facilitated appropriate play. If I had pushed the Floortime.

Instead, I worked tirelessly on finding him the very best teachers, on creating the most effective, comprehensive IEPs, on hiring tutors to work with him one-on-one in our home (based on Temple Grandin’s mother’s approach) so as to have someone in-his-face as much as possible, on finding him speech therapists who didn’t mind getting hit, on finding him the best medication combinations, the lowest dosages, that would mitigate aggression and relieve anxiety and stimulate speech. On taking him to this activity and that, trying every sport, every music therapist, blah blah blah.

And, in direct contrast to the Passover song, it would never have been enough. Sometimes I have experienced autism parenting as the Anti-Dayenu.

It would never have been enough, if my goal was to completely flatten all of the autism out of Nat. And once I realized that this was not my goal, I could relax a little and just plain enjoy my boy. That’s what I’ve been doing for the last seven years. I enjoy the check-ins with teachers and House staff, I learn whatever I can about his day, his week. But I will never know what goes on inside Nat’s head or in Nat’s school day as completely and thoroughly as I long to know because it is just not possible to live someone else’s life for them.


Thanks to parents who are ahead of us, to the blogs and communications and perhaps even kudos to myself, I am coming to realize the same of Adam and my life now that he is about to turn 8. I also do credit divorce no matter how painful. In becoming a single mother, I've had to completely re-prioritize my life, Adam's life, and what's important to both of us.

I've come to realize that there will be good times and bad times and that I had them too as I was growing up. I have had to let go as a result of divorce — letting Adam go to his dad and not having any control there. I've had some of life's biggest "letting go" lessons and this may actually have benefited Adam.

Now, I am ready to think about overnight camps (next year — trial one weeker), and social skills groups for kids like him. I realize that as much as I espouse Inclusion, he gravitates towards kids more like him. It's not that I would stop advocating for that, it's just that there is a fine balance and NO MAGIC FORMULA for the perfect life.

I have to begin thinking about myself too — a mother that went into overdrive for her autistic son. I would never stop my work but it will take different forms at different stages of our lives. There is no secret formula. We just try and live, for better, for worse and in growing and learning we try to find the balance.

— added by Estee Klar on Saturday, April 3, 2010 at 8:41 am

Unlike some that can pay for those "therapists" and private help… Most of us here in Ont cannot so we're stuck with the only Prov funded ABA program which in our house was a disaster. I attempted private speech therapy and when one was still a baby, I could cart him an hour away to where the elder went to speech camps. Then I tried to get therapy closer to home for the younger since the elder passes for "normal" and it went from $100 for 1hr/mth to $200 for the same time… and we had to give it up.

I can get respite help, but it is not "therapy" and respite workers aren't interested in being therapists. Also, I find they tend to have their own agenda's that aren't compatible with ours. So, except for enough to pay for some teenage help, I've turned down the monies for it.

Unlike some that can pay for that private help and send their child to private school…. I have had to go through the public process and unfortunately go Apr 14th to see a 10 child, multiple exceptionality classroom, academic not lifeskills based… we're headed out of inclusion and into special ed. Which means a 25min special ed bus or cab ride one way, every day to a different school starting in June for a child who won't be 9 until nearly Xmas.

To say I'm upset is the understatement… I wasn't forced out, but the status quo was not satisfactory. I started the process in Dec and it took to this past week for the to add Developmental Disability (2 lousy words) to his IPRC to keep us out of the ASD classrooms. 4mths.

We live with autism. We don't live for it. I don't appologize for them but I do make certain they behave appropriately – I don't consider flapping inappropriate but I don't allow meltdowns – in public. We do swimming (little boy), Scouts/Karate/Library (eldest). We went to the easter egg hunt in the village yesterday. Eldest hunted, youngest preferred playing on the new equipment, so that's what they did. I homeschool on top of regular school btwn 15 and 30min/day about 200 or so days/yr. That little bit has made a huge difference.

Eldest will be fine. Most issues now are LD's which are addressed at school and he's doing amazing, the last of social and behaviour will come with age.

Little boy will never be "normal". That's OK too. I won't stop the education, the teaching, the push for independance… I'm no going to stop fighting for what's right or what he's entitled too… but he doesn't know that's going on… I'm just Mom and Mom needs to take him to play outside in a couple of minutes and push him on the swing… B/c that's what Mom's do.

— added by farmwifetwo on Saturday, April 3, 2010 at 9:28 am

huh. tried that "fill in the blanks" homemade form with Tom's teacher… she ignored it after a week. Same school that blew off peer buddies and recess with social skills because the schedules didn't work… forgot to take him to band because someone was having a temper tantrum (not Tom!).

Thus (among other reasons) homeschool.

Right now, though, it's a bit overwhelming (again, it's NOT TOM – it's the amount of driving to get the right teachers and therapists, and the stress of trying to homeschool while running home businesses).

Not sure what direction to turn right now… it's incredibly confusing and frustrating when you're trying to do right by your child(ren), make a living, and have a personal life all at the same time!


— added by Lisa Jo Rudy on Saturday, April 3, 2010 at 9:44 am

I think all parents of autistic children go through a phase like this where we either try to 'cure' our childre or at least try to mould them so they fit into the 'ideal' that is constantly peddled to us as parents.

I myself went through a stage like this. Endless appointments to she this therapist, that therapist, speech therpay, play therpay, sensory therapy. Endless activities both one to one and social.

Then one day I suddenly thought, what am I really doing all this for? Really? Was I enjoying my child as she was, the way she was made, or was I trying to do the impossible by trying to turn her into somebody else? After all if she wasn't Ana, then she wouldn't be Ana. It's hard to explain.

But now I have relaxed, not so much taken a back seat, but allowed Ana into the driving seat. Even if it's going to be a bumpy ride, I know that we'll get there, together.

— added by The Paw Relations on Saturday, April 3, 2010 at 9:53 am

Well, for some parents working with them 24/7 is difficult but proves to work. I wouldn't knock any parent who gives it their all. Roman now leads a very typical life as do many other kids.

— added by Anonymous on Saturday, April 3, 2010 at 11:07 am

You fart in their general direction ??? (Ben will love that one!)

I am amazed at how similar the developmental trajectories of both the kids and the parents are, regardless of the degree of communication impairment. Everything you did, I did, for the same reasons.

— added by r.b. on Saturday, April 3, 2010 at 11:52 am

Oh—and the Deyanu comparison was excellent. Ben loves the Jewish faith, and you have given us something to study for our lapsed catholic Easter!!!


— added by r.b. on Saturday, April 3, 2010 at 11:56 am

I wish I had known you (and your blog) years ago when my family was looking for answers. Back then, we lived and breathed autism, sacrificing much of our personal lives to try to "bring back" our son from autism to "normalcy." But having known you, even if only through your books and your blog (and yes, FB), I've learned so much about how love means not only doing everything to help our kids but also just accepting them the way they are.
Perhaps my son will talk someday; after all, he is only 15 and has a lifetime ahead of him. Perhaps not. But if I speak his language now, if I understand him the way he is now, then isn't that something a parent should be grateful for? I learned that from you, Susan. And for all the many lessons I pick up from your family, thank you.

— added by okasaneko on Saturday, April 3, 2010 at 12:14 pm

This post is going to take a while to sink in with me. Not from the acceptance side. Not from the this one treatment won't fix everything side.

But from the I can't know everything side.

I'll just have to keep working on that.

— added by Brenda on Saturday, April 3, 2010 at 12:19 pm

Whew, what a can of worms. 😉 This post reminds me of this op ed:;=40fa5571da8d92a1&ei;=5070&emc;=eta1

I don't think it's such a bad thing to strive to help your kid maximize his or her potential and to be comfortable in their own skin. I realize that my perspective on autism is very different, because my child can talk, is out of diapers, etc.. I have no idea how I'd feel if my child were like that of some my friends' children: non-verbal, self-injurious, violent, and facing a lifetime of dependence on others. It's a fine line we walk, and the lines get blurrier every day.

— added by ASDmomNC on Saturday, April 3, 2010 at 12:42 pm

Thank you for all these lovely comments, I'm glad these thoughts resonate with others. But some of you — it sounds like you think I'm not advocating for maximum potential! Or that I'm knocking parents who do. Things couldn't be farther from the truth. I am all about getting Nat as far as he can go, as I am about my other sons. But I've learned that there are some things I have to live with, in regard to Nat, Max, Ben, and myself!!

— added by Susan Senator on Saturday, April 3, 2010 at 3:51 pm

These issues are such struggles for us as parents with children on the spectrum. I have struggled mightily to let my M be her own person, and to accept and validate all that she is. To try again and again to not put all my eggs in the 'cure' basket, but to find other baskets in which to place them. It has been a hard, long road. It has been dealing with my own issues, as well as parenting issues.

I long for the day that we, as autism parents, can tell each other that we fully accept our children with autism, without the hammers of hell, of other parents who have children on the spectrum, raining down on us. I have found that when I say I truly accept M and her autism and don't wish for a cure, that I am wishing away her potential to be truly who she is. I think that grossly misunderestimates the depths to which I have thought it out.

For me, for my child, what works for me, is different than what works for others. I have found that when I am lacking 'more' it is a need within me, not a need within my M. When I turned the car around that one day (and Susan, you know the story) and decided not to do the therapy, the latest, the newest, the promised one – I turned a corner in my life. I got back to truly, truly, within my soul, enjoying my child for who she is in my life.

— added by Penny on Saturday, April 3, 2010 at 8:02 pm

Susan… Since when have you not done everything possible for Nat?? He's doing very well, living independantly from home, working, making friends, socializing…. Is that not the goals everyone has for their children??

One day I hope to get to that very place. Eldest will make it in the real world. But, I hope to find that style of placement for the younger.

Right now… I have a self contained classroom to see…

BUT, I am excited… we finally have "Yes". We've had "No" for a long time but "Yes" has been an echolalic repeat of what you have asked him so I had to add "Yes/No" to the question to yet "Yes". It started about 3 days ago and he's now doing it all the time without prompting…

The little things 🙂

— added by farmwifetwo on Saturday, April 3, 2010 at 8:33 pm

Thank you, FW2… right back at ya.

— added by Susan Senator on Saturday, April 3, 2010 at 8:36 pm

Oh, Susan….I'm so sorry, I didn't mean to come off sounding like I think you don't advocate for maximizing potential. I know that you do. I guess I was just preemptively striking against the ugly turn I worried this post would turn into. Just me trying to be peacemaker when apparently there is no need, LOL.

Anyway, I can understand how the therapy-go-round can be exhausting for many parents. If it's more of a hassle than a benefit, it's time to get off and just let your kid be your kid.

— added by ASDmomNC on Saturday, April 3, 2010 at 10:31 pm

%d bloggers like this: