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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Saturday, April 22, 2006

 

My Talismans

I’ve been wondering what every one says to their God (or themselves if they see fit) what they think about their lives, their lives with their children? What do you really say (or think)? Do you wish your lives were different? How many of you are satisfied with the way things are? When the going gets tough, do wish it could be easier?

Why is their so much irony in everything?

Adam lashed out at me yesterday for the first real time. He has experienced frustration in the past, some “obsessive interests,” for sure. Yesterday, in the midst of excitement and then going to the potty, he just lunged at me and pulled my hair. I put him on the soft bed and said no. I said no about three times. He rolled around and cried, but looked at me the entire time. I sat on the bed and held him, telling him to calm down. He did after a while, but certainly, the “upset” stuck, and remembering it just set him off a little again – on and off for about an hour.

Again, this morning while making eggs, he grew impatient and grabbed my new and adored love handles (hey, I just started training again). There was clear frustration on his face – all tensed up and red. I told him that I couldn’t cook them any faster, and held him as we counted to ten with some deep breathing. I’m hoping that maybe he will start counting to ten on his own one day, to help him self-regulate.

With the parallel experience of some profound advances in Adam, and some unbelievable skills, I am finding that his emotions don’t follow suit. My thoughts on the matter are this: I want to show him that I care, that I understand (or at least think I do) his frustrations, while teaching that aggression isn’t acceptable and by giving him tools to enable his success with all kinds of skills, including communication. If we can provide him with tools to be successful -- and I define success in an indigenous way, not always contingent on outside definitions, then perhaps I am filling a gap for him. I like to call it building bridges (a title of a book by O.T. Ellen Yack), that allows us to travel between both our worlds, sometimes allowing us to meet in the middle.

But for now, he is becoming so frustrated. He is having difficulty with unstructured time, which occurs at the end of the day. He wants so badly to communicate – he is typing every day on the computer – the animals he sees on the videos is one thing he does on it and together we are learning about the seasons on the computer as well as labelling actions. When I acknowledge what he writes with a song or some script, he is so delighted that I “get it.” In some ways, I hope that he understands his power and that I do “get it,” even if I feel clumsy in how I help in through this phase of his life. Perhaps that's how we all feel as parents -- clumsy, uncertain and in need of support that not pities us at the expense of our children, but that educates us to at least feel we are helping them the best way we can -- to morally support us, and accept us as the blubbering dimwits we sometimes are. In terms of parenting, for me, the goal is to understand Adam during the chaos of a tantrum, or the obsessive wandering up and down the stairs. During these so-called "obsessive" episodes, is he Gutstein's confused child, or Tito's child in need of gravitational pull? Indeed, the most terrible feeling of all for a parent, is the feeling of helplessness. There are times, in autism, when a parent feels such a disconnect between making a child happy, teaching a child through the tougher phases of life, discipline which tends to get wrapped up in the terms "weakness" and "deficit." The tendency is to look at the latter without remembering that our little ones need guidance just like any other child, but delivered differently.

So what do I ask the God I am still not certain exists, but seem to question a lot? I ask a lot of why questions, but most often I ask him how do I be the best parent for Adam? What should I do? How do I do it? (Please don't write ABA in the comments section -- I'm for finding effective ways to educate and teach and ABA is a term that means many different things to different people).

Life’s questions seem to all boil down to Adam’s joy, his contentment, his ability to do the things he wants. It feels that so much is riding upon my shoulders and it is those days I need to take a deep breath and count to ten myself. Practise what you preach, right? It seems that Adam’s life is built on the decisions I make today, and in the autism world, those decisions can feel heavy. Trial, error, thought, personal research, and time seem to be my most effective talismans. With every hurdle, there is a joy. With every sunset there is a dawn.

17 Comments:

Blogger Kristina Chew said...

Picture schedules for the unstructured time seem obvious but sometimes the obvious is what we miss. Books such as Mukhopadhyay's and blogs such as those listed on Autism Hub are constantly helpful, as the literary-toned musings of parent Clara Claiborne Park.

And, behavioral teaching principles such as I use in my classroom--basic pedagogical techniques of putting difficult behaviors on extinction (shrugging off those yells or students holding conversation with each other when the professor is talking), of making sure that I am making things fun and motivating, of being careful in the "use of force" (metaphorically meant)--these worked well in a lesson on the ablative absolute last Friday. More of the same sorts of teaching techniques continues to help Charlie whether at the desk, in line at the store, or during inbetween time.

The wages of autism are sweet and sticky as honey, indeed.

7:58 PM  
Anonymous Anonymous said...

Have you tried sign language? I wonder if there are signs (anything) that he could use to tell you he's getting stressed. Have you tried weighted blankets or vests? Does playing music in the background help? Maybe a new spinning toy to give him something to do while you are fixing eggs. Maybe he could sort a pile of buttons into colors or copy letters on a chalkboard or on paper?

My God doesn't like ABA. :-) He says it's bad for autistic kids.

I thank my God for such a great autism spectrum child. I also thank him for such a great NT child.

9:04 PM  
Anonymous Anonymous said...

Activity schedules (which can include play and mastered tasks) work very well, particularly to help a child during unstructured times in their day. An excellent book entitled Activity Schedules For Children With Autism/Teaching Independent Behavior, by Lynn McClannahan PhD and Patricia Krantz, PhD is one that is highly recommended.

9:34 PM  
Blogger Estee Klar-Wolfond said...

Call it what you want, we definitely do all of the above. We have introduced picture schedules, but he needs them for some of the lulls in his day too. Pics for sequencing actions are wonderful. As for schedules, he still needs his down time. It's just that down time right now is a little long (he doesn't go to bed until 10 p.m.)

Adam is verbal, so sign language wouldn't help, it would hold him back only because he would have to spend time learning it. His language is "way up" these days, but when he's excited or anxious, the words have more difficulty flowing out. I want to work on "fluency" with him. Pictures and the computer, or just plain writing the words (he is hyperlexic) help a lot. Adam can write words from memory (sight) and phoenetically.

As for extinction (remember, I've read Skinner and Lovaas -- I'm not naive about the approaches), I do agree when it comes to aggressive behaviour. However, I always need to marry understanding of his frustration with a behavioural approach. He is frustrated, and that frustration is important to me. I need to help him with the skills he wants -- he wants to learn so much.

So you see, you can't classify a teaching methodology in autism. You learn from many and create the methods you need when you need them. That's why it's so important to be flexible -- so you can move quickly.

Adam's frustration for me is like a call for help. When he has down time and he is investigating something in his own way, I let him. If he needs to stim for a while, I let him. How much "interferes" with the other parts of his day, I can't say for sure yet.

Like an onion, Adam is unfolding before my very eyes. I tread carefully before I impose what I "think" he is doing/decide what he wants. This is the fragile part of parenting.

9:01 AM  
Blogger Jannalou said...

If I were in Toronto, Estee, I would come hang out with you guys just for the fun of it - and for the conversation. And then if I could possibly help you out at all, I would. Sometimes I have ideas nobody else ever thought of - and that includes the most knowledgeable of parents and the most experienced of professionals. I learned early on to "go with my gut" when I'm working with kidlets (insofar as the restrictions of whatever methodlogy I'm supposed to be applying will let me). Probably that's my main advantage over the professionals. And my empathic abilities, personal experiences of various autism-related phenomena, and that joyous ADHD ability to "think outside the box" are likely what make my ideas work, more often than not.

But I don't live in TO, and I don't know how ethical it is to offer child-specific suggestions when I haven't met the child. I do, however, hope to put "Info Sheets" onto my web site. These will cover general topics and methods that people ask me to look over. Hopefully they will help more people.

9:29 AM  
Anonymous Anonymous said...

A Functional Behavioral Assessment (FBA)should be conducted for the main purpose of identifying the variables that trigger and maintain problematic behaviors. This would be necessary to institute a complete behavior intervention plan and to have accurate data to be certain as to the "why" behind the behaviors.

4:36 PM  
Blogger Kristina Chew said...

The true mark of good teaching for all children is flexibility.

And there is always more for all of us to be flexible about in our own learning!

Cheers.

4:56 PM  
Blogger Jannalou said...

Anon: While I agree in principle about the FBA, I have to note that FBA's are rarely used correctly, and the resultant "behaviour plans" rarely deal with actual causes for the "undesirable behaviour".

A lot of people who do these seem to enter into it with the idea that "this behaviour means that, and this is the solution for said behaviour, so regardless of what the data in the FBA shows, we will simply use said solution anyhow."

7:30 PM  
Blogger Zilari said...

Estee: One thing to remember is that whether autistic or not, all children are going to be upset / annoyed / frustrated at times. I doubt that even NT children are always transparent in terms of their motives.

From how you describe the situation, it sounds as if you handled it in the best way possible: letting him know that aggression isn't okay, trying the count-to-ten technique, and noting that unstructured time is probably a contributor to Adam's frustration.

I definitely identify with this observation: With the parallel experience of some profound advances in Adam, and some unbelievable skills, I am finding that his emotions don’t follow suit.

Many people on the spectrum experience this sort of varied development. I remember being told repeatedly as I was growing up, "How can someone as smart as you act like such a baby?"

This was extremely confusing to hear, since the child has NO idea what skills in certain areas may indicate to the adults around him/her in other areas. Certainly continue to acknowledge and work with Adam's strengths, but realize he may take a bit more time and teaching to learn self-regulation.

I can remember being entangled in "tantrums" at age 4 or so, and yes, there was a definite feeling of being "stuck". I remember people telling me to "stop!" (crying / yelling / thrashing / etc.) but having absolutely no ability to do this -- "stopping" is an abstraction.

Concrete things like, "take a few deep breaths" or "try sitting under this blanket" would probably have worked better in terms of calming me down.

8:06 PM  
Blogger Estee Klar-Wolfond said...

Yes, Zilari, I think the way you do about this. Question for you:

I think this is part of Adam's circuit -- stickiness -- not allowing himself to let go of negative thoughts, even. Have you experienced the same and how did you deal with it? I am a bit conflicted about this. Part of me says that if the OCD "behaviours" don't make him happy, or are interupting his learning, then we have to distract him and "break the chain." (see all that behavioural lingo...man, it really sticks). The other side of me says that part of this is calming himself after a long day. Another part says he needs more structure, even in his unstructured times (which is very long -- from about 4 to 10 p.m.) to feel more secure.

Overall, Adam is doing marvellously, but I believe his anxiety is part of being four years old, and partly because he can't find the words to express himself when he is undergoing anxeity. And is part of his anxiety rooted in OCD?

A doc I know suggested that Adam has learned to chain strings into his thinking and speech. She has theorized that Adam is indeed capable of speech, but gets stuck on his strings/self babble. She believes that when we break the string, he gets angry.

By telling everyone this story, I hope to illustrate the complexity of the matter for all of us, and how autism is being "interpreted" by all of us who are not autistic. As a parent, many different people will tell us different things. It's good to listen and then make the best choice for your own child.

7:34 AM  
Blogger Eli's mom said...

Hi Estee-
Boy, you sure sure asked a lot of questions! Just wait until Adam gets to the "Why" stage--he's going to drive you nuts!
As parents of autistic kids, we have so much pressure heaped upon us. There seems to be a bit of stress in your post, and we can surely all relate to that, anyway. It can be very unsettling to have your previously sweet kid lash out, be demanding and impatient. Such is the nature of the beast. I mean beast in a good way, though.
I really hope I don't get slammed for saying this, but it appears that what you are seeing from sweet Adam is budding autonomy. My son has been going through this for longer than Adam, but he is a bit older--going on 5. My experience with my son is that he is going through many typical stages of development but at later ages than the norm. Adam wants what he wants, KNOWS what he wants, wants it RIGHT NOW, but is still not adept at expressing it. The aggression is probably a manifestation of frustration, and you are doing the right things to moderate it, but these things take time. Patience is what I ask my "god" for nearly every day. I don't bother with the whys and hows anymore, because the answers will come when you really need them.
That unstructured time at the end of the day? When my older NT kids were small, I had three kids in four years, so I had my hands VERY full, I called that time of day "the gangrene hour" because that was the time of day when everything went rotten.
My best piece of advice? Don't be so hard on yourself. You are doing a fantastic job, and it's the toughest job in the world. YOU are the best mother for Adam and he is the best kid for you.

10:19 AM  
Blogger Do'C said...

Hi Estee, do I detect a bit of the mid-life introspection, and what's the meaning of it all?

11:00 PM  
Blogger Zilari said...

Estee: I sent you an e-mail on your hotmail account...I don't know how often you check that one but I wanted to let you know because I realize that since my e-mail is a Yahoo account the message could end up in the spam folder, or something like that.

Sorry this is off topic!

1:41 AM  
Blogger Estee Klar-Wolfond said...

Eli,

I want to give you a hug! Yes, you've got the situation pegged. Yes, AUTONOMY. That is so right.

Dad of Cameron,

I'm 41 (a young looking one, um hum,). OF COURSE I'm asking the meaning of it all!!! ;0)

Zilari,

Yes, I got your email and sent it also to some family members...THANK YOU! Your input is always so helpful and I really appreciate everything you tell me.

If you all lived in Toronto, I'd invite you over for a coffee.

6:47 AM  
Blogger Do'C said...

Estee,

You may enjoy this collection of themes on the subject of "what's the meaning of it all". At the very least, it's another gateway to quotations from a variety of perspectives. It's brief.

link

1:49 PM  
Blogger Estee Klar-Wolfond said...

Dad of Cameron,

This is great. Thank you.

9:22 AM  
Blogger Tova said...

Estee,

I found your blog pretty much by accident. I wanted to tell you that I have two NT boys, ages 3 and 5; both are highly verbal and very connected to their emotions and expressing them; and still, what you described with Adam seems very accurate for my experience with them a good deal of the time.

I don't mean that as a way of denying the difference autism makes, but to agree with Eli's mom 100%. Autonomy is a challenge for growing up, for all of us, because we need structure but we also want to make choices. My husband and I have found that the more structure and routine we build into our lives the happier our kids are, and the better they are at figuring out what they want or ways they want to modify the routine. That even works for us as adults.

Thank you for embracing who Adam is and not feeling the need for him to be something or someone else. Someone dear to me has a son who has been diagnosed on the autism spectrum, and I feel so sad when she talks about looking to the day when he will "recover" or "get over it." Those of us with NT children need to commit ourselves to loving who they are and not what they achieve; your example is very powerful.

12:59 PM  

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