On Paper

A view of the mountains from our hike this summer. The first time any of us climbed a mountain.
A view of the mountains from our hike this summer. The first time any of us climbed a mountain.

Tomorrow is our IEP meeting for Jake.  For you non-school people, or non-parents of kids with special needs, that is Individual Education Plan.  We meet with all the important people in the school who work with Jake, and sort out some goals and objectives for the year.

It’s wonderful.

They really care about him and us and do so, so much good.

It’s also really hard.

It’s hard to look at Jake on paper.

We always start with some strengths and positives, and celebrate successes as we talk about him.  But the point of the meeting is to figure out the negatives, the things that he needs more support, practice, or focus with.

I hate looking at the papers.

There are so many forms.  It hasn’t even been a year since the diagnosis.  The paperwork for that was an anvil falling on my head.  Heavy.  Every few months, there is a consultation with his Behaviour Interventionist.  Also wonderful, also encouraging, supportive, leaves me with hope, and fills me with forms.  Those forms are like a pick axe to my heart.

They ask me to rate things.  Like, How often does Jake disobey rules or requests? How often does he act anxious?  How often does he make a compromise without conflict?  How often does he speak in an appropriate tone of voice? How often does he question rules that seem unfair?  How often does he join activities that are already started?

I don’t know!

Sometimes?  Often?  Does that make him worse?  Does that mean that he needs more help?  Does that mean that he’s struggling?  Oh!  How can I help him?  How can I ease all of these things for him?  How can I make the entire world make sense?

It’s crippling.

Talking about how well he eats his lunch, or how he is participating in gym does make me happy.  But it disappears as soon as I have to focus on all these black and white questions.

I know it’s on me.  I know the teachers and the EA and the student services teachers are all helping him.  But it’s on me.  All of those things.  I know that they are all connected.  They are all springing from his brain and his sensory issues.  They will all improve as he learns strategies to cope and connect with people.  And that needs time.  And patience.  I have both.

He is autistic.  I waffle between wanting to declare it to everyone I see, just to tell them so they offer more patience with him and wanting to protect him so fiercely from anyone seeing his struggles.  More often, however, I want to share with people what I have learned, what I know now about autism.  I no longer doubt, ever, the truth of the diagnosis.  I have read enough now that I can practically see the strains on his brain.  I can feel the tension of his muscles, grip the piles of words, rules, sounds and smells that are thrown at him.  I can even breathe in the release that his own words and sounds create.

I struggle with the feeling that Jake’s disabilities and struggles are not obvious enough to justify the support that he needs.  His verbal abilities and quick intelligence lead many to focus on his strengths.  While I adore that, and love that people really do see him in a beautiful light, I also see the overload.  The panic.  The feelings of uncertainty.  The lack of short term memory.  The way he loses track of what he is supposed to be doing or what day it is.  The way he invents his own game that he plays in his head beside his classmates at recess instead of actually joining in their games.

I have read about autism being an invisible disability.  I see it.

So yes.

These meetings.  These forms.  This focus on the struggles and needs he has, it is so important.

And it breaks my heart.

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Not if, but when and how.

I have been thinking about talking to Jake about being autistic.

I have been thinking about it a lot.

There is no doubt in my mind that we will tell him.  It’s not an if.

It’s when.  And how.

He has grown up so much this year.  He lost two of his baby teeth this week.  It was so not an issue, his dad was more freaked out than Jake was.  He listens to us talk, he thinks about what we say.

He’s not perfect, but I can see that he is becoming a compassionate, thoughtful, and responsible kid.  I am incredibly proud of him.

Asajj Ventress leading a battalion of battle droids to cause mayhem on my dresser.

I know he needs to know.

An adult autistic, Chavisory says,

  1. They already know that they’re different.  You can’t keep them from knowing they’re different by not telling them.
  2. They deserve to know.  They are entitled to accurate information about themselves.
  3. Yes, labels can carry stigma. But it’s the stigma that’s wrong, not the fact that a word exists to describe some facet of how your brain works.
  4. Knowing how to describe why things are harder for you is not “using it as an excuse.”
  5. Having community is pretty much the best thing.
  6. They will figure it out anyway.

https://chavisory.wordpress.com/2013/11/01/you-should-tell-your-kids-that-theyre-autistic/

I want to help Jake develop confidence, courage, and self-esteem.  I believe that these traits, along with faith and a lot of work ethic, will be his most important life tools.

Jess at Diary of a Mom explains how she responds to the question of whether she told her daughter she was autistic like this:

I will tell them that we believe that knowledge is power and knowledge of oneself is the greatest tool imaginable.

I will tell them that we feel that secrets imply shame or fear. Or both. I will tell them that I want neither in my home.

I will tell them that we believe that our daughter deserves all of the insight we can give her into her strengths, her challenges and everything in between.

http://adiaryofamom.com/2011/12/19/disclosure/

I truly don’t know when.  Or how.  I’d like to ease into it, just little bits at a time, and without a big fuss about it.  I want to talk about how Jake is autistic without lowering my voice, without glancing at him for his reaction.

I want it to become a part of the natural vocabulary in our home, and have it be wonderful.

I want to be able to support and connect Jake, to build up his self-identity and value.

Jess can’t stop herself from asking a final question, and I feel it bears repeating.

I’ll ask a question of my own.

What if we could bring these kids TOGETHER? What if, instead of labeling them per se, we can give them a tool with which they can identify themselves and EACH OTHER? What if the label is a gateway to the monumental understanding that these kids are NOT alone? What if this group – this incredible group of people – this group that can so easily feel so desperately isolated from their peers – what if they found out that their differences, in and of themselves, are not so damn different after all?

I am quite certain that sooner is better than later.  I guess it is the how that I’m really stuck on.

How to get Jake to take his Vitamins

One of the things I struggle with the most is the feeling of frustration and loss of control when Jake is insistent on doing something his way, or exclusively.  For example, this morning, I wanted Jake to take his vitamins and eat his lunch.  In a timely way, so that we would be able to get ready and leave for school on time.  Jake stood, looking at his vitamins, bouncing on his feet, eyes flickering, for what seemed like eternity.  It was probably about 10 minutes.  He said he just needed to think about it.  He said he needed to remember what they tasted like.  He said he needed quiet.  He said he had to build a fort first.

It was exasperating.  It was mental.  And it was followed by him sitting down at the table to eat his waffles.  Which he couldn’t eat.  Because he had so much to say.  Literally, he took one bite in ten minutes.  And talked non-stop the rest of the time.

Eventually he both took the vitamins and ate his breakfast.  And went to school.  However, I am left exhausted, unsatisfied, feeling guilty, bothered, and frustrated.  I imagine he felt much the same.  All before 9 am.

I have been rereading Raun K. Kaufman’s book, Autism Breakthrough.  It is loaded with incredible ideas and insights.  It focuses on putting the parents squarely in charge of the changes they want to see in their autistic children, which is a huge weight.  But I cannot deny the common sense of what he says.  He also focuses on loving our children respectfully, building meaningful, trusting relationships with them, and showing them all of the best reasons to want to learn to be more social.

He describes using motivation rather than reward to entice our autistic kids to change.  “Instead, think about what your child’s area of interests (motivations) are…. If your child is verbal, what does she talk about when an adult isn’t dictating the conversation?”  Then he says to use this to work on specific goals.  Today, I am choosing taking the vitamins and eating breakfast as my two goals.  Then his technique looks like this (my paraphrase):

  1. Wait until Jake is paying attention freely and willingly
  2. Playfully invite Jake to participate in a game designed around something HE LOVES and the goal.
  3. Keep playing the game as long as you possibly can, adding layers of challenge.

It sounds like it would work.  But it doesn’t deal with my anxiety of trying to get ready to leave on time.  However, I believe that I could use this to make some progress.  My plan would look something like this:

  1. Start my own game based on Star Wars.
  2. Playfully invite Jake and Aiden to play my game and include the vitamins, as maybe, super Force power-ups.
  3. Keep playing the game, suggesting they have to eat the breakfast in small sections before they battle the next bad-guy.
A series of awesome Lego people.  I think my favorite is the one with two heads.  Hard to decide.
A series of awesome Lego people. I think my favorite is the one with two heads. Hard to decide.

It requires a level of energy and enthusiasm I don’t feel first thing in the morning.  It requires creative thinking on the fly, which means that my mind has to be moving quickly, very quickly, as I will also be trying to eat my own breakfast and feed Penny.  The payoff could be that we are all happier, breakfast gets eaten, and no one starts the day feeling crummy.  I’m in.  Isn’t this exactly what I’ve been saying?  That I would do better?  That I would get myself in gear and really figure this out?  Okay, I’m in.

Fries with Trust, or Trust with Fries

I read a beautiful post today about trust. It was written by a mom, about her father and her daughter and how over time they have developed a trust where even though the little girl is autistic and dislikes being touched, they can share an embrace. She explained how when we love someone so much that we can hardly breathe because we just want to hold them, sometimes the best way to show that love is to restrain ourselves until we can develop the trust that is needed. Like I said, it was beautiful.

Jake and I struggle with trust. When he was younger, when I didn’t know about autism and what he actually needed, I pushed him too hard. I tried to get him to try new things, even when it became clear that he really didn’t want to. I tried to get him to be adventurous, to take a risk, to jump into a pool, for example, when he really, really didn’t want to. I am sorry now. I am working so hard to earn his trust.

Most of the time I can see that he does trust me. He loves to be held and snuggled by me, so long as I respect the “not too tight” rule. He loves to look into my eyes, and I love to look into his, as long as I wait for his initiation and am not also trying to talk to him. But then something comes up that I don’t understand. And I struggle.

Today it was French fries. Jake loves fries. Loves McDonalds fries, Arby’s fries, restaurant fries, homemade fries. He loves straight fries, crinkle cut fries, and yam fries. He loves fries with the skin on and fries with no skin. He loves those tasty taters that are essentially balls of fries. So his sweetheart of a grandma made him some very special alphabet fries. They were gluten free, casein free, totally healthy and totally fun. We spelled his name. But nope, he would not eat those fries.

I didn’t get it. And I didn’t let it go. He was being rude, refusing to eat them. He said his tummy was full. And then he asked me for a Popsicle. Not going to happen, buddy. We took the fries home, telling him that he would eat those fries before he was allowed to have anything for a bedtime snack, he would eat those fries for breakfast if he had to.

So there we are, ready for bed, and he’s crying about the stupid French fries. And I finally asked, “Jake, what is wrong with these fries?”

Well. They were too curly and strange. He was worried that they would make his stomach curl and be sick. They were not the right shape for food to be.

That’s when I clued in. This is not about food. This is about autism.

He is autistic. He can’t eat strange fries. They have to fit into the idea of fries that he has, that he knows. Strange things are scary. Strange things are unknowns and that is scary. I am scaring him. He doesn’t trust this food and he is scared and crying because he thinks I want him to eat something wrong.

Breathe, mama.

So, we calmed down, and talked about fries and how they are made, and how I ate them and they were good. Then we broke them into straight pieces that resembled what fries should look like and he ate them without difficulty. Except for the S and the R. They were just too curly. And that’s okay with me.

I am going to get it. I am going to earn his trust. I just have to trust him. I have to ask him and I have to listen to him. It goes both ways. It’s a hard lesson for me. But I can see the payoff.

Jake received this Lego set for his birthday and his loving aunt spent ages building it with him.
Jake received this Lego set for his birthday and his loving aunt spent ages building it with him.  Building trust. right!

Stories of trust earned by learning how to really love each other and show that love through restraint and patience inspire me. I want to respect Jake and what he is experiencing. I want him to trust me so that he can stretch and become more flexible, because he trusts me, not because he is forced into it.

I will need to breathe more.