Susan's Blog

Sunday, June 3, 2012

Autism Mommy Swami #6: Give yourself a break

Dear Swami:

Charlie is verbal and has quite good language, but very little social language.

Some background stuff – my husband has been very ill and in hospital for nearly nine months.  One month ago today, he finally had a heart transplant.  He’s been home now for about 10 days, and it’s fabulous to have him home.  Charlie loves Paul and is thrilled to see him every morning.  He says a lot “Daddy home.  Daddy not go hospital”.  He wants to cuddle Paul all the time, he wants Paul to read him stories at bedtime (of course, by stories, I mean look at any book with a picture of a toilet in it, but I digress!).

So that’s all lovely, but… Charlie has become very controlling and manipulative of me.  I know that it’s the impact of such a huge change – a good change, but a huge one  – but it’s very hard to cope with.  He hates it when I help Paul with anything, and the nature of Paul’s surgery means that I will have to continue to help him a lot.  We took him to the shops for an ice-cream this morning.  He refused to hold hands, lay on the ground in the middle of the car-park screaming, demanded an ice-cream, then had another tantrum because he saw the bakery and wanted a cake, then another because he wanted to open the boot of the car, then another because he didn’t want to get into the car, then another because I opened the door of the car…you get the picture.   I am making the mistake of giving in to him because I don’t have the physical or emotional energy to say no and deal with the fall-out right now.

I could deal with it except I know he is perfect for anyone else.

I don’t really know what my question is.  But still, do you have any advice?

Thanks so much,

Charlie’s Mom


Dear Charlie’s Mom,

Thank you for writing and for your compliments. It is okay if you don’t formulate a question; the Swami can sense what you’re getting at. First, let me say that Charlie as you know has experienced a tremendous event in his life: his father’s illness, absence, return, and convalescence. Charlie also has a difficult time processing information due to his autism. And, Charlie is at an age where this sort of pulling away happens. This is true for any kid; once they get beyond 5 the will to independence is strong. It makes sense; as children grow and develop more and more neural pathways and connections in the brain are made through experiences and exposure to life. Awareness emerges. In our guys, maybe it is a more cloudy awareness. Maybe it is overly bright. I don’t know. But I do know that what you are experiencing is probably some natural dismay not only over the difficult behavior itself, but also over this developmental change, some confusion as to whether this is natural (and therefore “okay” on some level) or is it autism (and therefore “not okay”). Do you know what I mean by the latter? We are conditioned to believe that if it’s due to autism, it must be worked on, and if it is due to normal development, it is not mysterious and we can either wait it out or decide among popular parenting strategies what to do.

But we have difficulty looking upon our autistic children as normal. So much of what they do causes us fear because we don’t have a model of what to do.

But it doesn’t have to be that way. Think about what you would do if Charley were not autistic. You would give him some latitude, I think. Because neither of you has the psychological strength just now to work on this. If you are going through a period of extraordinary circumstances — and I would say that a husband’s recuperation from a heart transplant qualifies — you must give yourself a break. You must try and believe that at some point in the future, you guys will feel routines again, you will feel “normal” in many ways. Maybe not normal like my family — as if I’d ever call us that! — but normal in that stuff no longer feels new, sharp, and achy. Humans adjust to the most incredible situations, and I would bet that you already are somewhat easier about all this in your life than you were when Paul first came home.

I know how hard it is that Charley is suddenly being challenging and demanding — and manipulative with you. You are wondering how you should stop it. You are wondering what you should be doing so that he isn’t always like this. Should, should, should. As my wise father would say, “Forget your shoulds.” I would adjust that to say that in times of great stress, ease up on the shoulds. Charley is not going to act like a six year old forever. Even Nat, God bless him, grew out of wanting to pee on houseplants and tear up family photos for attention. Nat learned to sleep through the night at 8 years old. Nat learned not to pinch and scratch people when he was frustrated. You’ve read the book; you know that the bad periods do end.

I know that definitive boundaries and consistency are important overall for children, and often especially those on the Spectrum, but the fact is, relationships are softer than that. Nothing lasts forever. So I think if you can let go of worrying about Charley’s behavior growing rigid and unchangeable, for a little while, you would feel more relaxed. Charley would sense this, and maybe he would relax a little, too. If you can do what I do sometimes and just shrug with a sigh and say, “Ick, I am so flawed. Oh well. We’ll survive.” Keep your focus on how loving Charley is with you, on your husband’s return to health, on your family’s wonderful resilience and know that when you are able, you will be able to deal with Charley’s challenging behavior. You might even find it goes away on its own. The behaviorists are not always right. Sometimes you just gotta be, give in, let go, and trust yourself that it will be okay.




“Ask the Swami”, love, love, love.
Your next book title with contents herein.
Big fan of Swami, affirming!

— added by Linda on Sunday, June 3, 2012 at 12:41 pm

I have had some of the same issues, and have found that sometimes I have made the decision to cut short an outing and just go home. There may be more outbursts and I am going to see people stare at us, but the time is not right and the fight is going to end right here and now.

Of course, that ride home will be hell, but it’s setting a boundary. With my Charlie, I have found I have to have “walking away power” when the tantrums start.

Like Susan says, it won’t last forever. Try keeping a journal that helps you see what works and how your Charlie grows and develops. It will help you see what you have both overcome.

— added by JanB on Sunday, June 3, 2012 at 1:39 pm

Thanks so much!

— added by Susan Senator on Sunday, June 3, 2012 at 7:51 pm

Try reading Kristina Chew’s blog on her autistic son (also Charlie). I think the blog is called “We go with him”.
She and her husband have lots of experience and great success in understanding, interpreting, and softening these types of difficult behaviors.

— added by S on Monday, June 4, 2012 at 9:24 pm

I LOVE this series Susan. So many of us in the autism community look up to you for advice because it seems like you have been through it all. You’re like a light at the end of the tunnel.

— added by Sunday Stilwell on Wednesday, June 6, 2012 at 1:18 pm

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