Susan's Blog

Thursday, April 30, 2009

Looking to the Sky For Answers

I don’t blog as much as I did since Nat’s moved out. Half of that is because I have gotten used to his not being here, and so my mind runs on different tracks. But then the other half is that when my mind collides with thoughts of him, it grows cloudy and unsettled, like the sky before an August thunderstorm. Winds of doubt blow around, causing my pain to rustle and drop to the ground. It all just lies there, unresolvable. I can tell you, I tell everyone, that this was the right thing to do, that he’s doing great, that he transitioned amazingly well, didn’t look back.

I just worry about what I don’t know, what I imagine. If he misses me, what then is his thought process? Does he think, “I want Mommy,” but then, where does it go? How does he explain this to himself? Did the missing-me subside into a gentle but persistent ache?

I just don’t know how well he understands things, and he can be so passive. Most of the time he is passive and gentle. He has “outbursts” when things go impossibly wrong for him, but so do we all. I just know how to modulate mine better, and I know to fake things so that others don’t worry or get alarmed.

I saw an article in People Mag today, about Sky Walker, who faces murder charges. And all his killed mother ever said about him was how he was her life, her heart. Sky had an outburst that just escalated. I have seen Nat like that. I have felt things that strongly myself, where once I lost control, there was nothing else to lose, so I would just keep spiraling downward. I know that Nat has felt like that. I have seen him cover his face after an outburst. What else could that be, other than shame?

Why is it that I can believe he experiences and understands emotions like shame and remorse, but that I can’t believe that he understands why he has moved out?

I don’t write about this too much because it’s so big and amorphous and irresolvable.


I also believe that our children feel remorse and guilt just like we do. As a matter of fact I know for sure that my sweet Punkin does. She knows when I have had enough and just when I think I can’t take anymore she will come and ask for a hug, so she knows when she has upset mommy and she knows how to make it right. I also feel that Sky Walker doesn’t understand what has happened. My heart goes out to him and his family because if you haven’t experienced the outburst, the tantrums, and the overwhelming feelings of helplessness, you would not understand. I just feel sorry for him. This could have easily have hppened to one of us.

— added by Anonymous on Thursday, April 30, 2009 at 4:59 pm

Susan, I think about Sky everyday. Did you know his father was voted physcian of the year last year in Wisconsin because of his outreach to his community? Well, Dr. Walker abandoned Sky and his mother years ago.

I think of Sky everyday. I am so sad and where is the autistic community? It is silent and to me that is damning and contributed to my fallout with the Hub. Sky is so alone, so very alone.

— added by Kent on Thursday, April 30, 2009 at 6:49 pm

Your heart taught his heart. Of course he understands. He sees the joy you have when he visits, he feels the sorrow you have when he leaves…He knows those things. You are his constant-wherever he is. That is why he transitioned so well…

— added by kathleen on Thursday, April 30, 2009 at 9:20 pm

Kent, IMO The Hub doesn’t like to admit such incidents happen. That people with Autism can get to that point where they are uncontrollable and unfortunately kill. It’s doesn’t meet their “autism is wonderful, autism is a culture” mandate.

I have worked and worked and worked and am lucky that my aggressive son is on the mild end of the spectrum and now has those outbursts under mostly conscious control at 9.5yrs of age. The emphasis on education and language IMO made all the difference. Now it occurs maybe once every 3mths – not the 9yr old mouthies but the meltdowns – whereas before it was constant. I truly expected he would be in a PDD or Behavioural class by now not enjoying a regular class and doing very well in Gr 4. He has a token program to help, and he’s doing amazing this year.

I am also lucky that my little one (severe) is the most laid back, happy, laughing, fun little boy in the world. I couldn’t imagine having to go through that again with a child that doesn’t grow to understand how to regulate himself and his behaviour. He too b/c of his good behaviour enjoys being integrated in a regular classroom and is thriving there with a wonderful EA and Teacher.

I have heard horror stories – first hand not rumours – of children in public school with these outbursts, the PDD classes that are out of control and the children being sent home daily. I’ll never allow my little one to be in those self contained classrooms and if necessary in h/s he will be homeschooled to keep him out of them.

Could you just imagine if they are aggressive in public school, the inability to control them as an adult…. YIKES!!!! There needs to be better education for these children.


— added by farmwifetwo on Friday, May 1, 2009 at 8:54 am

I read your book. Making Peace with Autism? Seems you have less peace with autism than most I know. Not trying to be mean but do you know how self-absorbed you seem?

— added by Anonymous on Friday, May 1, 2009 at 2:39 pm

Thanks for controlling yourself, Anonymous. I would hate to see what it’s like when you are *trying* to be mean.

By the way, not to be mean, but, do you know what a “personal memoir” is?

— added by Susan Senator on Friday, May 1, 2009 at 3:03 pm

To all of you: maybe there does need to be more written about Sky. Maybe there does need to be some honesty about the aggression that sometimes shows up with autism because of the frustration with communication and sensory overload. Admit it, and then find ways to ameliorate it. It’s what FarmWifeTwo said: this needs to be better education for these children.

— added by Susan Senator on Friday, May 1, 2009 at 3:07 pm

I find that I understand some things at some times and then I don’t understand those same things at other times. That’s neither good nor bad in itself, it’s just the way my mind works. Imperfect transient understanding of many, or probably most, things that I could be expected to understand has been working for me for nearly five decades. I would imagine it works well for other people as well.

— added by VAB on Friday, May 1, 2009 at 5:34 pm

There needs to be better education for the children and intensive parent training LONG before they get to the point of constant aggression and meltdowns and end up in these horrible PDD classrooms or a residential setting. The problem is that so many providers and districts allow watered down therapy and “babysitters” for therapists when these children need highly intensive and highly trained people from the earliest age possible.

To sit back and look at the “beauty” of autism as some do in this so called ND crowd is just bizarre. There is nothing beautiful about a teenager killing their mother or becoming so aggressive that they can no longer live at home. I wish these people would get out of living in the world of denial. The most damage occurs when these ND types convey the message of “autism is just quirkly and fun” to parents of newly diagnosed kids and they in turn fail to get the proper treatment early on and the cycle continues. Totally irresponsible in my opinion.

— added by Anonymous on Saturday, May 2, 2009 at 6:53 am

I definitely agree that more training, and earliest education helps for skill-building of all sorts, including communication and behavioral mitigation. But I don’t agree that ND acceptance of autism does the “most” damage, nor does it lead to tragedies like Sky Walker. I still believe that something like this tragedy is way outside of the norm.

Sometimes I do believe that too much emphasis on treatment and cure can give an autistic person (or anyone with a disability) kind of a complex, that they are defective and need to be fixed.

We need to strike a balance between obsessive treatment and autism worship.

— added by Susan Senator on Saturday, May 2, 2009 at 7:57 am

I agree with your comment that “We need to strike a balance between obsessive treatment and autism worship.” The difficult thing when it comes to our children is we normally go extra miles and then some. We can call it obsessive treatment, but the parents may call it determined and hard works. It is difficult to imagine what Sky Walker is thinking right now. He must miss his mother so much but could not express his feelings. I understand he did a terrible thing, but whenever I see his pictures with the helmet over his head it hurts me inside.

— added by Collierlab on Saturday, May 2, 2009 at 10:46 pm

%d bloggers like this: