Susan's Blog

Sunday, December 20, 2009

The First Cut is the Deepest

When I first had my children — particularly Nat, because he is my firstborn — I was very weighted down with a new sensation. This feeling was not necessarily good or bad, it was just very, very encompassing. I used to look at Nat and feel something catch in my throat, twinge behind my eyes, and I didn’t know what it was. Why did I feel something akin to tears when I looked at my darling baby? Sometimes I say it was the autism I was sensing. Sometimes I say it was post partem depression. My own inablity to love, that’s another one I came up with sometimes — self-hating jackass that I can be.

Today I was thinking that it was just new parenthood, the axe cut that separates the childless from the childful. Once you have a child in your life, you change. You have to. Suddenly you have to think of them. No matter how shitty you feel, let’s say you just gave birth, you just pushed a watermelon out of your body. Or you had it sliced out of you. Or you just went all the way to China to bring this small person into your home. The absence is now full; you have to make space physically as well as emotionally, and stretching space is not an easy thing. Not only are you expanding to encompass this new life; you are also now required to be ever vigilant.

Last night after the party, Ben was tired beyond tired — that hypnotic, almost-drugged sleep you fall into on a long car ride home. The thing is, so was I. We both staggered upstairs and all I wanted to do was rip off my boots and fall into bed. But then Ben said, “Hey what’s that?” There was something on his bedsheet, looked like from when he’d had a bloody nose. Without answering I just dove down and stripped off the bed — who cared what it was, it had to be gotten rid of. I had to wake up, swallow down my immense discomfort, flex exhausted muscles, and remake his bed. Of course I did! It was my child, needing help. Just do it, Susan; the quicker the better.

It’s the perpetual consciousness that is a part of you eternally, once a kid is in your life. So here’s what I think: when the child has a disability — and autism is the one that for some reason comes to mind — the consciousness cuts a level deeper. The severity of the cut is directly proportional to that child’s need for help.

This is why I wrote my second book, because this is often on my mind. With such searing consciousness, how can one let go sometimes and just live? How can we have a life of our own? How do we find some balance? Last night I had some of that, because we chose not to bring Nat to the party. Of course, there was a different cut, because I missed him and felt guilty that he was not there. But I did enjoy myself — a lot. Until I had to change that sheet.

Places such as the hypnae centre of advanced hypnosis teach various forms and techniques of hypnosis that can be applied to optimize daily forms of work.


At the end of the day, we are entitled to a life too. At the end of the day, we will have to find some form of care for our children.

In the end we have to acknowledge that true autistic disorder is not "joyful", "wonderful", nor a "difference". It is a disability – period.

Some would claim you should be "joyful" about your son's autism and me about mine. No matter how many snuggles, kisses, giggles, and good times…. I watch him as I did at lodge breaky this morning stimming, flapping and giggling barely able to tell his Dad what he wanted for breakfast (had to be prompted) and you realize just how debilitating it is. How he's verbal (just) at home, but take him out, although well behaved, it's still overwhelming (sensory) for him… Even as a friend, sitting across the table, told me she was amazed at the volume of words lately – about a 2yr old level (he's 8), I realized that although a great milestone, still a disability.

Doesn't mean we don't love them. But in the end, we need to live too. We don't owe them our lives, they have to live theirs as well. Doesn't make it easy/guilt free though.

— added by farmwifetwo on Sunday, December 20, 2009 at 12:18 pm

My child and is my life. I don't have the time or desire to constantly think about "what about me". Neither do most parents of autistic kids that I know.

— added by Anonymous on Sunday, December 20, 2009 at 2:12 pm

It can be a struggle, I know we all understand what you are going through.

— added by Susan Senator on Sunday, December 20, 2009 at 2:24 pm

Well, we survived a party today. Adam insisted we bring both Jack & our 22-month old. OMG. And then as an added plus, the other two guest couples had chosen to leave their toddlers at home with sitters! So they chatted merrily and ate leisurely while their older typical children played. It looked like a lovely party (from the TV room where I tried to contain the kids.) — Cathy in CT

— added by Cathby on Sunday, December 20, 2009 at 6:42 pm

Cath — The others were enjoying themselves and were probably also feeling guilty and missing their kiddos! It cuts both ways. 🙂

— added by Susan Senator on Sunday, December 20, 2009 at 6:45 pm

Thinking "what about me" sometimes is actually pretty healthy. In fact, doing some things for yourself is good for your children.
I've seen many, many children with autism as they enter residential school. They have been all ages, all different skill levels. I can see the exhaustion and sometimes panic in their parents eyes, especially the mom's as they prepare to leave them. In a sense it is letting go of life as you know, as much as life changes for your child, it changes for you. Parents have said that they have forgotten how to live their lives, without the 24 hour care, worry, planning, and everything else that encompasses life with autism. Once they have a chance to rest, step back, and start living again, and bring their kids home for visits, everyone benefits. The child has the benefit of a rested parent who can put everything else aside for a few days and fully concentrate on them, without the rest of life needing to be done. They get the best of both worlds, and sometimes it can be so much better and the temptation is to keep the children home. Everyone has to do what is best for their own children and their own families, just like all of us do:) Michele

— added by miti on Monday, December 21, 2009 at 8:57 am

Okay, put your hand up if you would have covered the schmutz in Ben's bed and said "We'll analyze this tomorrow. Now go to bed."

Anyone, anyone? Lisa

— added by Anonymous on Monday, December 21, 2009 at 2:41 pm

Okay, here's the real, ugly, honest truth. I thought that the stain might be something else… from Nat…so did Ben, I'm sure.

— added by Susan Senator on Monday, December 21, 2009 at 2:46 pm

So what's your point miti38? Put your kid in residential so parents can get some rest and "get their lives back." Give me a break. No thanks. I wouldn't rest one minute handing my child over to a residential facility and to me that's a pretty lame way to "get your life back."

— added by Anonymous on Monday, December 21, 2009 at 3:03 pm

The thing is, if I were sending my neurotypical child to a residential school for several complicated reasons, would there be an outcry? Why are families of autistic children somehow more subject to outsiders judging how you raise them? Why do so many in the autism community feel that they somehow "own" other people's autistic children and can therefore tell them what they're doing wrong? We would never do that with neurotypical children.

— added by Susan Senator on Monday, December 21, 2009 at 3:16 pm

The feeling they "own" them is self preservation. A fear that if for some reason we can change a fully autistic child into a fully functioning adult, for some reason someone is going to want to change them as well.

They fear the fact that my eldest son was dx'd at 2.5yrs of age with Mild PDD – non-verbal. At 6 with "a mild form of ASD" or Non-verbal learning disorder with a speech language delay that now at 10 is as "normal" as his friends. GRANTED, we have some LD's (writing, short term memory). His English is low C's, everything else A's and B's. GRANTED I refuse to remove the ASD dx b/c if I do I will lose the OT and the keyboard off his desk.

I didn't change him. We didn't do a brain transplant. He was EDUCATED. He had private speech therapy, school speech therapy, school OT. He had parents (and school) that worked daily on appropriate behaviour and social skills.

This is their fear… if I can say "my son made it"… then what's their excuse if they too are on the HFA/Aspie/NLD end of the spectrum. Not only that, he can then lobby himself afterwards when they complain and say "if I did it, why can't you".

I don't know what this huge fear of the outside world is. Asperger's square 8 had a post about how autistics hated going out last week. Mine – love it. Last night my autistic disorder son READ OUT LOUD, his bible reading for the carol service ON HIS OWN.. all I did was point to the words. The same child that spent the remainder of the hour flapping, laughing, giggling and going "Grandma sing" whenever she stopped. They spread lies… IMO… out of misplaced fear. The fear of change.

Not one will answer the question "Why is it OK for an autistic person to be put into care to protect those that don't need to be".

— added by farmwifetwo on Monday, December 21, 2009 at 3:26 pm

I would agree that many parents cannot "rest" while their autistic child is in someone else's care (in residential). It may even be possible that this situation causes the child to distance him/herself even further from parents and others as a defense mechanism.

From my experience, when your child moves away, the real work begins. Most adult children with autism still live at home with their parents, for lack of a better option.

— added by Anonymous on Tuesday, December 22, 2009 at 2:58 am

Boarding schools for NT kids don't restrain and drug them up. Ever been to a residential group home Michele? Be honest and stop trying to compare the two.

— added by Anonymous on Tuesday, December 22, 2009 at 5:39 pm

Each school, each group home, each child is different. Parents make their best judgment at the time, and must reexamine as time goes on.

— added by Susan Senator on Tuesday, December 22, 2009 at 5:48 pm

Susan, thank you for your post and and providing a forum that allows many diverse opinions to be expressed.

There is a major difference between NT and Autism (or many other disabilities). The assumption that is prevalent in society is that persons with disabilites do not recognize abuse or negligence. Somehow, they do not feel the same pain or loss as an NT person. That is the rationalization/justification used by many agencies I believe. I don't have documented proof, only my own experiences. This is the attitude I have fought most profoundly to change. JD

— added by Anonymous on Tuesday, December 22, 2009 at 7:17 pm

I hope you don't stop your very wise comments. You bring an important perspective to the dialog. I love hearing what you think. I am sorry about the sniping tone of some of the comments. I almost didn't publish them because I don't like nastiness, but I thought that the points raised were important to discuss.

— added by Susan Senator on Tuesday, December 22, 2009 at 8:16 pm

Anon forgets that unless they plan to be 80 yrs old with 50yr old disabled adults in their home, sooner or later they have to go into care.

I would much rather make that choice when I am physically and mentally able to do so. I would rather make that choice while I am alive, not have the courts make it for me when I'm dead. I would rather make that choice when I can physically and mentally change the choices I've made.

It's not bad parenting, it's responsible parenting. That doesn't mean that he won't be here daily on the farm. That doesn't mean I won't take him daily out for a "Mom and kid" activity. That doesn't mean that he's being dumped and ignored. It means he has a place, a safe place, should (and it will b/c you can't out run the wheel of time) something happen to us.

Anyone who thinks their other children should be made to look after their disabled sibling IMO is WRONG. It's not their fault, it's not their responsibility. Yes, my elder will probably be capable of doing so…. but legally I've left that responsibility to others while they are children and will continue to do so as adults. Just need to sign the paperwork. I won't dump my responsibilities on him.

The Caregiver's bill of rights. Granted it's seniors but it's the same for disabled person's. The disabled one I have on my computer.

— added by farmwifetwo on Wednesday, December 23, 2009 at 7:25 am

That is an excellent point. You can't put off the future, and you certainly can have a regular relationship with your kid — and the Residence staff — even if they sleep and work somewhere else. I talk to the House every night, I email them, and I visit weekly.

— added by Susan Senator on Wednesday, December 23, 2009 at 7:31 am

I am absolutely terrified, that someone I do not trust is going to make those choices for me.

It's expensive to do legally if they are a child – financial stuff has to be added. And it's a HUGE favour to ask, and a bigger one to find someone you trust. Ironically I opted for a first cousin, not our siblings and Dh agreed.

So, I will make those decisions. Dh has an opinion, but we've found for us that a division of labour or such works best in our home. He has final say on the farm, I have final say on the children. Works for us.

— added by farmwifetwo on Wednesday, December 23, 2009 at 7:43 am