On Therapy and Shame

We are looking for a new behaviour interventionist.  I think I may have found one.  I am hopeful.

We are taking a break from ABA therapy.

I am incredibly thankful for the interventionists who have come and worked with Jake and our family over the past two years.  They have been professional and kind, respectful and wise, and have taught Jake and me so much.  Now we are ready to move on.

I want Jake to learn more in-moment strategies and skills.  I want to avoid tiring him out further and adding to his stress.  I want to see him actually apply some better behaviour skills, rather that learning them, practicing them, and then forgetting or refusing to use them.  My plan is to have someone come and work with us twice a week for a while, once during the day for a few hours and once during the evening.  I want them to integrate and join with us in whatever we are doing that day, and help us negotiate the trouble spots.  I want them to slow us down, so that we have an outsider voice breaking the tension.  I want them to work with Aiden, my husband, and me as much as with Jake, so that we are all learning together how to function better as a family.

I am hopeful.

Really, I want to better support Jake when he is struggling.  I want to slow down my reactions so that I can think clearly and see what is triggering him.  I want to be able to think about autism and what I know about how he works instead of getting frustrated about the behavior and never dealing with the root of the issue.

I want to model for Aiden how to be a friend to Jake.  I want to model for Jake how to relate to his brother and parents.

I read this amazing blog recently.  AMAZING.  I took so much out of it.  She writes about everything I feel and articulates situations I completely relate to.  Her big point, however, is that our medical culture and history treats mental health as something to be cured.  This is not always in the patient’s best interest, as truly, many mental health conditions can never be cured.  Rather, we focus on therapy as a way to deal with, cover up, and mask the underlying condition.

I think that therapy can be incredibly helpful.

We will most likely do more therapy in the future.

However, I believe that therapy has to be done very, very carefully.  The goal of any intervention needs to be helping the person learn a skill that will make their quality of life better without demeaning or attacking their self-esteem or self-value.  Learning ways to communicate is so important.  Forcing children to repeat words that don’t empower them and leave them still unable to explain their intelligence does not help.

The adult autistic community has written much on this subject.  They have totally convinced me that one does not need to be verbal to be intelligent and one can be disabled and still be incredibly valuable in society.  However, when I encounter real life scenarios with other parents at a playground, for example, stigma, judgment, and ableism are prevalent in my town.

Just the thought of talking about autism with other parents is scary.  How do you say, my child is on the autism spectrum, I can see similarities in your child, can we talk about that?  I can’t.  I just can’t.  I can’t even say, I know that there are so many kids these days, with everything from autism to ADHD and everything in between.  What makes your kid special?

What I have learned about autism makes me want to change my community.  We are a lovely community.  Small, but not too small; Christian, but not overly religious; helpful but not too nosy.  And yet, we struggle to change.  I would like to see parents who step up to each other and encourage each other even when they don’t know each other.  I would like to see parents who can say, my child is autistic, it’s nice to see him playing with yours.  Instead of, why don’t you teach that kid some manners?

We need to change the way we look at each other on Facebook.  I know from experience, I have been in tears, and not known how to get help, and posted a status update that says something inane like, “so tired of cleaning, why do they make so much mess when they play.”  If I had actually been on the phone with someone, I would have been crying, explaining what went down that day, how my heart aches and I doubt my parenting, how I love my kids but feel like I’m failing.  We would have cried together, then shared a story, made plans to have coffee or wine sometime soon, and ended the phone call laughing and being made a little stronger.  Brene Brown talks about this idea in her book, The Gifts of Imperfection, when she describes how being vulnerable creates real relationships and conquers shame.

I would like to see dads who listen to moms when they say, “I think there is something going on with our child and I want to have them assessed by a pediatrician.”  I would like to see moms who say, “I can see you are grocery shopping with a child who struggles in busy stores, I get that and you are rocking this.”  I would love it if I could see friends be honest with each other and say, “I can see that your child is showing some autistic traits, you need to talk to someone about it and have your child assessed.  It does not mean you have done anything wrong, there is nothing wrong with getting support, and I will be here to go through it with you.”

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Line up of stuffed animals and toys on a couch. They are happy toys, ready for the day’s events.

I am trying to work all of these ideas together into some sort of presentation I can give to parents of autistic children or even parents in general in my hometown.  I don’t know how to go about it.  Ideas are welcome.  I want to help parents move past shame and fear, get the point that disability and differences aren’t things that change the value of our children.  Parents need to have that point so that we can teach it to our children.  I want Jake to know that being autistic is nothing bad, it’s part of his character, his struggle, that makes him who he is.  I want him to be able to ask for support and be himself without being ashamed or judged.

 

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What (on God’s green earth) is there to say?

Alright, here we are, summer holidays.  Jake and Aiden are thrilled that school is over and they are facing an endless cycle of cartoons, play time, and trips to the beach.  It is my absolute favorite time of the year.  And yet, we are now four whole days in, and some patterns have already become painfully clear.

One of the hardest things that my husband and I faced last summer was Jake’s constant interruptions.  All of a sudden we were all home together, for the entire summer, and no one, NO ONE but Jake could speak.  We would go for hours, looking at each other, trying to start conversations and giving up.  We talked to him about interrupting.  We tried to model conversations.  We tried to walk into a different room for three minutes to quickly figure out who was grocery shopping and who was cooking dinner.  Nothing worked.  He followed us.  It was so hard.

We were relieved in knowing that we were getting help.  We had started having home visits from an energetic and encouraging family support worker.  While technically out of her usual cliental, she took us on as a favor to Jake’s soon to be kindergarten teacher. She arranged for our first visits with the occupational therapist and we felt so thankful to be getting help that somehow we survived.  But it was so hard.

This summer, my husband has a new iPod that he can text with.  He joked with me that we can just text each other all summer so that we can communicate while in the house with Jake.  As we laughed, we realized that this is an awesome idea.  It doesn’t deal with the actual problem, but it may save our sanity.

Jake has learned so much this year, and the interrupting was listed right away as one of the goals we wanted to make a priority with his behaviour consultant.  So they have been working on recognizing whether someone is ‘available’ for conversation.  It is getting better.  In the last four days, there have been many times when Jake started talking to me and asking for my attention and I responded, “I’m just not available right now, give me five minutes.”  I was busy doing something like cooking on the hot stove or keeping Penny from falling off of her change table, situations not obvious to Jake yet.  He has followed up with, “Mom, are you available now?  Now?  Now?”  So it is a work in progress.

His interruptions are varied, from chants that make no sense whatsoever, but seem musical in nature to demands for attention so that he can discuss the fine points of his newest Lego creations.  He mimics both music we have played and TV he has watched with great joy.  To this he adds his own ideas of what is important, a request for pretzels or to create a new sports playoff bracket.  None of it is bad, or really hard to deal with, the problem is just the constant nature of his verbose interruptions.

In two more days my husband joins us at home full time for summer.  I am hopeful, and praying for a smoother summer for all of us than last year.  Jake has learned much, and is also doing more independent play.  We still have a long way to go on the interrupting, however.  It’s one of the most difficult things about Jake’s autism for our family.  Aiden has started repeating, “I want to talk, I want to talk, I want to talk,” until we get Jake to be quiet enough to hear what Aiden has to say.  It’s cute, and heartbreaking.  I want everyone in this family to be heard, to know that they are valued, and to be able to listen to each other.