myspecialboy.com

As I approach the last days of summer vacation, I am filled with so many emotions. I am distraught that J’s camp experience this July (which seems like a year ago now!) was so dismal. I am proud that he achieved a goal of receiving his green belt in Tae Kwon Do. I am filled with joy of the memories we shared on our trip to Lake George. I am happy that we took so many days that could have been ordinary and turned them into adventures. I smile thinking of all the new experiences we shared. And, now, I am a little sad that it is coming to an end.

I know, I know, I have said that I can’t wait for the kids to head back to school. And I really do miss my time allowances to do things like drink a cup of coffee to completion before it turns iced cold, or run an errand without having to negotiate a purchase for either of my two kids, or have to endure J’s umpteenth meltdown because I am asking him to do anything other than just letting him play the Wii!! But now that our time together for long stretches is coming to a close I am feeling a sense of longing. Although fleeting, we did have some terrific “moments” this summer.

We had times where J smiled a smile that I hadn’t seen for along time. Or I saw him hone a skill that he had been working so diligently on, even if it was all to himself, without my knowledge that he was struggling.

This summer he swam on his own. No floaties, no pack on his back. I mean, he wasn’t doing any kind of Michael Phelpsian freestyle strokes or anything like that but, for my boy, it was equal to that. He is so proud of this ability.

He rode roller coasters more wild than he had before and he friggin loved it!

He told us of new things he’d like to try: learn to play guitar, learn to surf, get a boogie board. All these things, all these ideas, these wants are new to him. And it is new to us that he is expressing them.

Currently, he is obsessed with getting an electric train set for Christmas. He keeps showing me You Tube videos of what he wants. Even though I get annoyed and tell him “I know”, I am secretly  proud that he is keeping an interest in something but allowing it to evolve. J has always loved trains, but the wooden trains, Thomas trains. He has now matured into electric Lionel train obsession here folks. But, hell, he is evolving. I’ll take it.

And, as we approach the school year, I am filled with dread of how new kids will have to get to know him. Will they appreciate his kindness or just get annoyed because he doesn’t get out of the way when he is asked politely to move? Will they get his sense of humor or just think that he’s funny because of his hand flapping when he gets excited (as some kids told me last year)? Will they be kind when they see him struggling with something and lend a hand? Will his new case manager want to help the child, and let the dollars come second? Will his new aide have the heart to help him, guide him or will she just tow the line that the district sets? These are weighing heavy on me right now.

A friend said to me the other day that I am currently in the throes of it with J. What she meant by this is that the next couple of years are going to be very trying. Both for J and for me. The reason being that, at this point, J’s behavior and idiosyncrasies are really obvious and polarizing socially, but in a few years, they will lessen and the children that he has grown up with will be more accepting because they know him. They will come to know what his strengths are, not just his weaknesses. Another mom confirmed that thought from her own personal experiences today. She said to me, “You only have a couple more years…”. I said, half jokingly, “Oh, that’s it??!”. It is so trying when you see another child looking at your kid funny but worse than that is when you see an adult look at your child that way. When an adult has no patience for “that kid”. When you feel the need to defend your child, educate the ignorant, ignore the impatient and throttle someone all at the same time. It becomes socially polarizing for me as well. When all the parents are talking about which soccer team there kid is on and I am still over here talking about autism. I worry that the other moms have heard enough already and may think that’s all I have to contribute to a conversation. I worry that standing on my soap box is at the risk of adult friendships, as well as those for my son.

When that other mom made that comment and I said I was only half joking, I meant it. Because if I have hope that there is an end in sight, the possibility for change, even if it is so far down the line, then I can get through it. I can be strong for him. I can support him through this tough years. Chances are most of the time he won’t even know that he is being excluded because he is so busy in his own head. But I will know. And my job has to be to shelter him from my own emotions. To hide from him the anger and frustration that I feel when things seem unfair or don’t go his way. To give people the benefit of the doubt and to be there to answer questions about my son because we are all learning what makes him tick. We are all learning about autism. And, we are all working on tolerance and inclusion.  It is not something that comes easily for us as a society. It is not a skill we can teach our children. They must experience it for themselves, with us along to guide them.

Enjoy each day, each moment. That’s what I keep telling myself.