A Series of Updates

  1. Jake now eats his vitamins. The Star Wars games didn’t work.  I think they were too complicated.  We found a system, though, where he shows me “his moves” for a minute, powers himself up, so to speak, and then downs the vitamins.  Awesome!  It has worked consistently for about 12 days now and I feel like we have created a new routine that works.
  2. I am trying to use the words autism and autistic more in front of Jake, working them into conversation within earshot. Baby steps.
  3. The IEP meeting was great, and afterwards I felt much relief. He is really only struggling with social issues at school right now.  We discussed enrichment for him.  He really is such a neat kid.  They spoke so positively about him.  He’s sweet, polite, and kind.  He is respectful.  He is not defiant or interested in causing trouble.  He doesn’t disrupt his classmates.  The one day that he came close to a meltdown at school, his EA correctly realized that he was feeling overly anxious and provided him a chance to calm down and reset, avoiding a potentially bad situation.  Apparently the other students all get along with him and like him.

I am going to work at having some more social opportunities for him, playdates and stuff.  I don’t want to overload any of us, though.

  1. We have also started Tae Kwon Do with both Aiden and Jake, and that adds more stuff to our routine too. It was really hard to get Jake into it.  His dad did Judo as a teen, and won several medals that the boys love playing with.  His cousin also does Judo, so naturally Jake thought that Judo was the only martial art that is acceptable.  Unfortunately, where we live there is no Judo offered, Tae Kwon Do is our only option.

We watched some videos on YouTube of kids practicing and Aiden was sold.  He was so excited he could hardly stand it.  The first class he was beaming the entire time.  Jake, however, refused to participate, and we agreed that he could observe and hoped that he would come around.  The benefits were so obvious.  There were much older kids, teenagers, mentoring the beginners.  The relationship possibilities thrilled me.  There was a great focus on practice and support.  There was a lot of structure and repetition.  There were clear goals and rewards in place.  I just felt like it was exactly the extra-curricular activity for us.

Jake was still not sold.

And so we turned to our standby for such situations.  Bribery.

We agreed that if both boys participate in 35 Tae Kwon Do classes, we will buy them a big Lego Star Wars set.

Well, I had barely whispered the idea and Jake was all of a sudden completely turned around and ready to go.  He had to wait three days before he could finally participate.  Oh!  He’s so funny.

And so, they both went.  They did great.  They learned lots, and Jake was already correcting Aiden on Tae Kwon Do etiquette.  They came home and put shiny stickers on their new 5×7 sticker grids that we printed to chart their progress.

I am thrilled.

  1. Jake has missed parts or all of eight days of school due to fevers. I am jumping into the gluten free/casein free diet in hope of making a difference with this and I have no other ideas.  We are working as a family to try to slow down and make time for him to relax and play.  I have booked an appointment with his new pediatrician to discuss it but it isn’t until November.  All in all I feel quite frustrated and helpless with the fevers.  They are so hard on him.     
  2. The other change around here is that all of a sudden, Jake is reading.

At the Meet the Teacher night, his teacher suggested that if we read with our kids for eight minutes a day, four days a week, they could earn a reward.  I am motivated by rewards just like my munchkins, and so I did not want Jake to miss out.  I pulled out the reader he brought home, and like nobody’s business, he read it!

The next day I tried him on something less familiar, digging out Green Eggs and Ham.  Sure enough, he read that too!  The first half, anyways.  Tonight he read Go Dog Go to his dad.  I am incredibly impressed.  That teacher, she is teaching him to read!  He is getting it and is so proud.  He was just grinning so adorably tonight.  I’ve heard that there is a light bulb that goes on when kids learn to read.  I had no idea how amazing it is to watch.

It’s so good. I am so proud.  There is so much evidence of God’s love here and we are so blessed.


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.

The Gift of the Diagnosis

Today we had our second IEP meeting with Jake’s school.  I have read such heartbreaking stories of others’ anxiety about these meetings.  How things can go so poorly, misunderstandings can happen, people don’t see eye to eye, and stress rules.  It just is so different at our school and I am so thankful.  I’ve also read some other stories like ours.  We are those people with the amazing team who love our son, who get him, support him, love him, and listen to us.

I cannot believe what a gift this autism diagnosis has been to me.  One year ago, I was so worried about Jake.  I was so scared of kindergarten, but I was even more scared of more days of him being home.  I didn’t know if I should hold him back a year, or put him in school.  I felt selfish because I didn’t know how to handle him and I needed help.  I felt hopeless because it was as though my relationship with Jake was based on rules, punishments, and not getting anywhere.  Meltdowns were violent, heartbreaking, long-lasting, and often.  I didn’t know if he was autistic or not, I didn’t know what that meant, I didn’t know what I was doing.  I did know I needed help.

Now he is so successful.  He is so happy.  He rarely has a big meltdown.  He knows how to calm himself down when he is upset, and I know how to help him.  Jake can articulate what he needs and how he is feeling, and I know enough to listen.  He is doing so well.  I am doing so much better.  I am able to stay calm when I talk to him.  I am able to separate discipline and support, punishments that are important and effective and when all he really needs is time and help cooling off.

What a window.

Being officially autistic has given Jake such opportunities.  He is pulled out of the kindergarten class with a small group for learning assistance twice a week.  He is pulled out with another group for speech and language in social situations support once a week.  He gets one on one time with his behavior consultant twice a week at school and twice a week at home.  There are two educational assistants in his class who listen to him, support him, prep him for transitions, and make his day run smoothly.  And of course, his teacher is incredible.  She has encouraged him and listened to him.  She has directed all of this.  She is amazing.  We are so, so blessed.

I know that there are other kids who have similar needs and need support in similar areas.  But our diagnosis has given us access to so much extra support.  There are times I wish they had a similar diagnosis so they could have all the good that we have too.

There are days I don’t know why Jake has to deal with this.  I don’t know why this happened to my baby, to our family.  Days like today, I don’t know why it happened but I am thankful.  How complicated.  I want to share this blessing.  I want to share.

I am prayerful.  I believe that God gives to us with responsibility.  We are stewards of His blessings.  Today I am resting in relief, soaking in the joy that came from this meeting with the people who make up our team.  I am praying for direction, for keys to what to do in the future.

I do know that my desire to focus on the positive, my attitude about Jake being autistic, has been strengthened.  There is nothing in the DSM-III, DSM-IV, or DSM-V that says autistic kids are anything less than incredible.  Like Temple Grandin said, “Just different.”  And he’s such a cute little kid.