The Karate Kid

A woman we know who is a karate instructor invited James to join a new class she was starting.  She is chock full of energy and always has a lot of projects in the air. 

I gave her a half-hearted yes at first because in theory it seemed like a nice idea and I haven’t found a karate class for special needs kids.  James also responds well to Estelle because she is very direct.

Last week, she reached out to see if we were confirmed.  I texted back and was honest.  I told her I was on the fence because I am reluctant to have James with typical kids because of how they might react to him.   

Two minutes after I sent my text, the phone rang.  It was Estelle…“You don’t have to worry about that in my class. I don’t let kids do that. I am always watching them.  If I catch them doing it, I take them aside...” and on and on she went until she started talking about the cost and what she was pro-rating etc.  I was too tired to say no.

So there we were this Sunday with Estelle.  There were just two other boys and a parent in the class. While Estelle was changing, the boys were pretending to do karate and one boy gave James a firm kick.  I could already see that they “knew.”

The class started and true to Estelle’s style, it was a whirlwind.  She talked fast and got right into moves.  She gave little explanation and the kids barely had a moment to stop.  It was everything a special needs karate class was not. 

But, James did amazing.  On the autism scale of one to ten, James was an 11.  He paid attention, tried hard, and asked questions that were somewhat appropriate.  It was like his brain didn’t have a second to wander.

But on the neurotypical scale, James was a 4.

James was the weird kid.  The other two boys laughed and rolled their eyes every time he asked a question or said something.  Estelle didn’t notice. The other mother in the class didn’t seem to notice.  But I saw every smile and every sneer.

As I watched, I tried to give James the eye or shake my head when he wanted to ask a question. 

But then I thought, “My son is raising his hand appropriately to ask a question.  Why am I shaking my head that he can’t?  So two kids won’t smile to each other about him?”

I need to hold my head up and say, “Great job James,” not “Don’t talk James; the boys will look at you funny.”

When the class was over, I didn’t know what to think.  It’s a small class and she kept his attention for 45 minutes.  I already paid so I’m going try it week by week.

I know it’s my choice if I give two children such power.  James goes to a special needs school and we aren’t around typical kids much, so this is new territory for both of us. 

But if I can navigate the unchartered waters of autism, I can at least try to navigate the unchartered waters of snotty kids – although it seems like getting a black belt would be easier.   

Special Moms

A mother of a boy who attends my son’s special needs school texted me, “Is everything o.k. with James?  Thomas has been upset and says there’s been a lot of yelling and cursing on the bus.”  

When I read it I knew it was code for “James is screaming on the bus the whole way home.” 

I texted her back and apologized ,acknowledging that James was the culprit and we were working on it with James and his school counselor.

She shot back a response, “Don’t worry!   I only asked because I wanted to make sure no one was bothering the boys. (sure..) Let’s get together soon!”

Another mom who I’ve been avoiding because James acted out on the last playdate called and left me a message to “check in.” 

It was official:  I felt loved. 

My son may have special needs but my own needs are quite simple.  Just a text and a phone message from two fellow special needs moms and I am set for the week.

I feel lucky and extremely thankful to have met other mothers who have been there (actually they are there), who don’t judge, who know the isolation and even the shame of being the mom with the “kid,” and who want to make sure you know that it’s o.k.

Special needs moms -- you can’t shock them.  They only try to top you so you won’t feel bad that your son took his pants off in the park because he was hot.  They agree that 20 minutes of interaction followed by 90 minutes of electronics is a successful playdate. 

And they will camp out on your living room floor so that their anxious son can have a sleepover at your house and feel like a “regular" kid.  

They tossed out the “Perfect Parent” rulebook long ago and moved on to more important things. 

That means they are fine with pizza, chicken fingers and french fries.  They don’t use the expression “healthy snacks” (some of them, like me, have never seen one).  And they never put on a shocked face when they see a child drinking soda.

They coordinate, advocate, and educate and they never compromise on getting their kids the supports they need.   

Looking for one of the FBI’s 10 most wanted?  Get a special needs mom on the case and tell her that the person in question developed a new vision therapy for kids on the autism spectrum.  She and her posse will find the guy overnight.

This Mother’s Day, I celebrate all of you awesome special needs moms for being there for your kids, your families, and each other. 

Back on the Shelf

It’s been a tough year for James socially.  Whatever small gains we felt he made, he slipped way back. 

He’s not connecting with kids and always comes home from school upset.  He perceives any interaction as one where he’s been wronged.   

About a year and a half ago, I gave myself permission to put the issue of friends for James on the shelf.  I’d stop putting pressure on James to do something he couldn’t do.  I’d stop feeling sad, angry, lonely, or slighted by other parents.  It was liberating.   

Gradually, a few connections actually started to happen – a boy from camp, two kids from school, someone from the bus. 

One day, my husband and I turned and looked at each other and realized that we were having playdates – and somewhat successful ones at that – on a regular basis.  

But after we saw the child for the third time, things started to go downhill.  By the fourth playdate, they were at a point of no return.  There has never been a fifth playdate. 

So now I feel like it’s time to lick our wounds and put friends back on the shelf.  My husband agrees but he’s also worried. 

He says to me, “Why is this happening..?” “What’s going on with him..?”  “What can we do..?” 

If this was last year, I would have said, “He’s getting older and friendships are more complicated,” “There was too much stimuli..,”  “The playdate went on too long..” 

Now I just say, “He has autism…”   

Even though I’ve accepted that James has autism, I still hold out hope that he will someday be able to make and sustain friendships.   

I just know that right now we need to stop letting this issue take up so much of our mental space because that space is filled with heartache and worry about the future and it’s not helping us to go there.

So once more we’re going to stop trying to put our square lives in a round hole – because it always feels better when we do. 

By All Accounts

By all accounts, my son’s IEP meeting last week was a success.  It started on time.  James was approved to stay in his special needs school.  I should have been smiling.

But I’m greedy. 

As in past years, his teachers and therapists wrote up a report about James’s progress in school.  As in previous years, the report was ghastly. 

I told myself what I tell any friend who winces at these reports – it’s purpose is to document his challenges, not his strengths.  When you visit a medical doctor, the file never says that you are the picture of health.

Some of it was easier to take:  James is one to two years behind in his subjects.  No surprise; I’m actually thrilled when he is just a year behind. 

But the social piece stung.  Two years behind socially would feel like a victory.  The report discussed his low self-esteem, how he gets mad at kids easily, requires a lot of breaks, is disruptive in class, says inappropriate things. 

I wanted to kick myself.  James has had a hard year socially, but I didn’t realize it was that bad.  

The teacher, psychologist and I debriefed after the IEP.  I apologized that James was so tough this year expecting them to interrupt me with, "oh nooo...he hasn't been that bad...he's fine.."  But, instead I got the look of acknowledgement that said, "oh yeah well...what can you do?"

When we finished, the teacher said that James’s class was in the park across the street, so I went over. 

The kids were playing kickball.  James was walking on the grass with his head looking down and twirling his hair.  I could see him talking to himself and imagined it was about Harry Potter, his latest obsession,

His team was up and the gym teacher called James to join in.  When it was his turn, I could see that he didn’t really understand the game.  He kicked the ball and a teacher ran with him to first base.

When he ultimately made his way to home base he didn’t seem to understand that this was a good thing.

The game ended and the kids ran over to the playground next to the field.  James followed the kids walking on his own twirling his hair.

Even among other special needs kids, James was an outlier.  My heart sunk.

Then I saw a boy walk over next to him and put his arm around James's back and James put his arm around the boy.  I watched them walk away arm in arm.  It was a Kodak moment that is etched in my brain.

My greed was satisfied.  By all accounts it was a successful IEP. 
 

Wouldn’t Want To Be You

Some of my friends are very aware of developmental milestones and red flags thanks to knowing me and James.  One friend whose daughter just had her first child emails me photos of her grandchild gushing about how he is “engaging appropriately.” 

While I’m happy for her, I still cringe a little at her emails because they feel insensitive.  I am reminded that while you can be supportive and tell me my son is a great kid and I’m a great mom, you wouldn’t want to be me. 

It’s like hearing, “It’s o.k. for you to have a child with autism, but we don’t want it in our family.” 

But I know my friend is a good person so I have to remind myself that I’d be her if I wasn’t me. 

When I was pregnant, I didn’t know anyone who had a child with special needs and the scariest thing to imagine was that there would be a “problem.”

I had an amnio and when it came back fine I thought we were in the clear.  James was born and we sailed right along for 17 months until things came to a halt. 

Still, we thought that with therapy we would get back on track.  Eight years later, we realize that we’ve veered way off track and there’s no going back. 

So I can understand why others don’t want to be on my track.  When people say “I wouldn’t trade my child to be any other way,” I admire them because I think I would.

James is my heart and my world.  But to live independently, to form relationships, to know that when I’m gone he will be o.k. on his own -- I’d take that.  

I know it means that I am looking at his life through my lens, not his, and that through his lens he may be happy, but I also know that the world is harder for him and mixed up for him and just plain loud. 

And I believe he feels lonely although it may not be as painful as it is for other kids.  But I can see that he feels it and as he matures I think he’ll feel it even more.

So when my friends say that their kids or grandkids are developmentally on track, maybe I’m really a little jealous because I don’t blame them for not wanting to be me.  I wanted what they want and somewhere inside myself I still do.   

A Day of Indulgence

School is out this week and I hadn’t made plans for James.  The two kids we have had playdates with are away for the week.  I didn’t have much to keep him entertained.   

Although James likes to be at home, I sensed that he was feeling lonely because he readily came to church with me on Sunday. 

He was looking for a little girl who often sits with us.  Marcy is nine years old like James and she has Downs Syndrome.  She and James complement each other very well.  She is gentle and patient with James.  He is very compassionate and protective with her.   

But she wasn’t there this Sunday and I saw the disappointment in his eyes.  When the service cleared out, he was still looking all around for her.    

I decided it was a James day – a day to spoil the heck out of my kid who doesn’t ask for much anyway.  We would indulge his newest obsession and go to the Harry Potter exhibit.   

James was so excited that he didn’t know what to look at first and could barely focus.  When we were finished, I got him a Quidditch stick and a bag of chocolate frogs.

We went to lunch for chicken fingers and french fries and then we topped off the day by going to Toys ‘R Us to play in the arcade.  

It was crowded in the elevator to the arcade.  James and I wound up on opposite sides and he started getting anxious.  “Mommy!” he said and started pushing through kids to get to me.  Two mothers automatically started yelling at him: “Say Excuse me!! Say Excuse me!!”

When he got to me, they looked right at me seemingly waiting for me to mouth my apologies and to reprimand James.  But I wasn’t in the mood.  They already yelled at him before I had a second to open up my mouth and now he was upset and started twirling his hair and talking to himself about Harry Potter.   

I think the light bulb went off for the mother nearest me.  She looked at me as if to say she understood.  I could have acknowledged her look, but chose to look at her with a straight face thinking, “I didn’t need your judgment so now you can keep your acknowledgement.”  

James played at the arcade and then we walked to a bus stop to go home, his quidditch broom between his legs.  He was a happy boy in his own little world. 

I tried to talk to him that night about being disappointed about Marcy not being at church.  I don’t know if he understood.   

But it was the mothers in the elevator that I couldn’t get out of my mind.  I know James didn’t understand any of that.   

James is different and evolving in his own way and because of it I am different and evolving too. I could of – and have in the past – reacted by explaining James to the moms or telling them it’s not their business to chastise my child.   But I didn’t this time because I wasn’t going to give them the satisfaction of thinking I cared about what they thought. 

Yet, it’s days later and I still can’t stop thinking about it – probably because it was more painful than I want to admit.  All I wanted was to enjoy a special afternoon with my son and not deal with the world’s knee jerk reaction to a quirky little boy who is doing his best. 

It’s part of the package that comes with autism and as James is getting older I think we’ll be seeing even more of it. 

Navigating eye rolls, ignoring the judgments and protecting my son’s heart means having a harder skin.  It’s something I’ll have to keep working on.  I don’t know what the formula is.  Maybe someone will indulge me and tell me sometime.

 

Behold My Bubble

It’s hard for me to believe that James is in fourth grade.  I still think of him as a first grader. 

So when I got a packet about a science fair at his school, it was a subtle reminder that my little boy with autism is getting to be a big boy with autism.

I read the information and it sounded fine to me.  I returned the packet to his backpack and thought it was nice that the school was doing this.

I started to notice the packet came home with James every day, so I’d periodically ask him how the project was going and would hear the typical, “I don’t know.” 

Finally, there was a note in his folder: “Science project exhibit boards are due on Wednesday.”

Oh, am I supposed to do this with him?

So we – meaning I – very quickly found a kids’ science book and we – meaning I – picked out a project that sounded doable.  We bought the oak tag together.  Then we – meaning I – sketched out the exhibit board and had him copy the words onto the board.

I tried my best to engage James in doing the actual experiment, but his focus was variable at best. 

Finally, it was science fair day – an afternoon mixed with sweet and sobering moments. 

James turned out to be very excited about the fair.  When anyone came near his exhibit, he pulled them over and said, “Behold!”

But, seeing James so socially behind his peers who also have special needs was hard to watch.  It didn’t help that his teachers and therapists came over and said nice things about him before mentioning that he is “struggling socially.” 

Yes, it’s pretty obvious.  I’m trying to enjoy the science fair.  Did you have to tell me?

It's no surprise of course. But when you have one child, it’s like living in a bubble. It can be easy to tell yourself that he is doing better than he is.

I was able to do the science experiment for James, but it doesn’t work like that for social skills. I know that we have a long and possibly unending road ahead of us and it makes me feel helpless. He is getting all the help he can get. 

But now we're back home in our bubble where we feel safe and can think that James can be a rock star at making friends some day. 

It’s a nice bubble.  We’ll stay here until we get another packet in his backpack.