Anniversary From Services

We've had a fairly uneventful end of the school year - Leo was sad but not upset like he was last year. His teacher said he's ready for 3rd grade! As always, it takes me by surprise. We continue to monitor...

June 22 was the anniversary of ending therapies three years ago. Pretty incredible to me. As always, I reflect upon the last year.

I sit back in my lawn chair at the neighborhood pool watching my son jump with abandon into the deep end. He surfaces with a spongy ball and a big smile, and with determination throws it forcibly to one of three other boys that are playing catch. One is his closest friend since Kindergarten. The others are friends from his regular local elementary school. Kid sister is nearby in the shallow end playing mermaids with her friends. Dad will be joining us here after work with Mexican take-out for dinner.

I am dry, in regular clothes, by the pool, with an unread magazine in my lap. I could glance at it if I want to, my kids are strong swimmers now, but I enjoy watching. I find it peaceful to observe life as it occurs right now in this moment. I am mindful of this daily gift I have received. I am the mother of a happy child that has choices. Seven years ago my son was diagnosed with PDD-NOS. And let me tell you, ‘happy’ wasn’t a word we used to describe Leo.

Earlier, Leo was picked up at nature camp by a mom whom he briefly met before we started carpooling. Leo wasn’t concerned with what exact time she’d arrive or even the kind of car she drove. He’s been to this camp before, but he attended without knowing any of the children. By the second day, he already belonged to a little group of three boys. He enthusiastically tells me about these new friends during dinner. He’s also become friendly with the carpool boy, playing basketball games, X-Box, or Webkinz almost every day after camp. I listen in to their conversation on the drive home “Hey, did you see the baby rats? Did you see those animal tracks? I saw you canoeing today.” They talk on and on about school, speculating about what teacher they’ll get in the Fall.

I think about that intense year of aquatic OT when he was little. The one hour of driving each way, the expense, all while taking care of Leo’s little sister. Our goal: The ultimate, a swim-safe child. This seemed impossible since the initial goals were to address sensory defensiveness, vestibular and proprioceptive challenges, fear of dying, hyposensitivity in legs, hypotonia in his arms and upper back. I was raised in Southern California on the beach, so I always had envisioned sharing my love of the ocean with my children. I think about Leo’s anxiety the night before each swim “lesson”, how he’d worry himself sick, rarely sleeping.

Today Leo has choices. He chooses to swim with his friends. We can go to the beach. At nature camp, he learned to wade and canoe, not concerned that he can’t see what’s under the water. Pretty surreal.

I think about how any change in routine would cause anxiety. Being 1 minute late would bring him to tears. I think about Leo’s intense separation anxiety that made it impossible to place him in the care of others. Being around other children would cause anxiety.

We went to visit my family/friends in California for 3 nice long weeks. It just gets easier and more fun as the kids get older. Traveling alone with my kids, I'm on alert per usual. I hold a common fear that many parents have, that our children will somehow get taken advantage of because of their innocence, their naivety. While waiting for a flight at the airport for that family trip, Leo’s social abilities were put to the test. A questionable character in the waiting area began talking to Leo, asking him personal questions. He protected himself. When asked what town he lived in, he said “I forgot”. He avoided eye contact with the man while boarding the plane by gazing at a nearby billboard, pretending to read about the arriving flights. He told me later that right away the guy seemed “creepy”. And he was right.

Am I an Autism parent? Yes. Has my life changed in 3 years? Yes and No. I don't have an impossibly giant schedule to manage and implement. I have similar fears and concerns, but they exist at a lower volume in my mind. I occasionally experience PTSS symptoms, such as when it’s time for a parent/teacher conference, or when we have a very ‘off” spectrumy day. We are still in debt although we are much better off financially than we once were.

Rollercoaster days are few and far between. Those ‘off’ days are hard, as I’m not used to them like I once was. I’m grateful that I’m not living in crisis mode anymore, so these days no longer do me in.

I’m still angry though. Angry that I have more company, meaning more and more people I KNOW and more people I meet have Autism. I’m angry that the issues at hand years ago are still the same today.

Autism is part of who Leo is, and I love him and accept all of him as a whole. I can't separate the autism from non-autism parts. Sometimes it’s fun to attach certain aspects of his personality to autism. But mostly, I just don’t care. I use our experience and Leo’s unique wiring as a learning tool. I regularly remind both my children about what Leo’s deficits USED to be and now LOOK. He can do anything. There are no barriers to his potential, and our reward is his success.

Baseball

Back in March, Leo decided he wanted to play baseball. In my town, it's quite unusual to have a boy that's never played at his age. Of course they try T Ball and if they don't like it they move on. When Leo was T Ball age we were light years away from doing it.
Since he no longer wanted to do Tae Kwon Do, I really wanted him to do some type of sport. I bravely said "Yes", knowing we'd be yet again in uncharted territory, facing the ultimate challenge, a ball, a SMALL HARD ball coming very fast towards Leo's face. I was very proud of him for wanting to try, knowing that most kids would have some experience. I was mostly proud that he wanted to try something new.

For about a year or so Leo has been playing catch regularly - football, and baseball, with Dad. He's also been playing some ball sports at school. Amazing to me that with his sensitivities he sought these things out. His obsession with sports and statistics helps I'm sure. He practiced on his own, replaying real plays in his head, almost every day after school as a decompression/transition activity.

The first few games were torture. Pure torture for old Mom here. Although this league is very laid-back and very supportive, I truly felt for him. Here was Leo, this giant kid (single A since he's never played and the oldest kid)that couldn't hit the damn ball. Not a surprise, the timing and the pitching machine really threw him. They gave him extra chances in still no luck. He was the ONLY kid on his team (and the other) that just couldn't hit the ball. He sat at the end of the bench, by himself, completely bummed but not giving up. I think what saved him was that he could throw and catch well enough in his position on first base.I sat there, deer in the headlights, wondering what I should say. Should I let him quit? At what point? On the drive home he said "I'm upset but I'll survive Mom". I reminded him about how it took him a long time to overcome his fear of swimming, but that he did overcome it and now LOVES to swim. The next game the coach brought a T-Ball thingy just for him to practice with. Leo was a little put-off by it since no one else had to use it, but I reminded him that it doesn't matter, and no one cares. The point is learning how to do it.

The next game he finally Leo "touched" the ball with the bat. Everything changed. I was crying behind my sunglasses. Big smile from Leo. He did it! He couldn't hit it the rest of the game but it didn't matter.

After that game we stopped at the grocery store across the street for a treat to celebrate - Tofutti, natch. Sydney, Leo, and I were getting in line when I saw a very familiar face in the aisle nearby. It was Amy! Leo's former ABA Clinical Supervisor - the person that designed and implemented Leo's ABA programs. It was like seeing family. She WAS like family for years. And I do miss our long conversations and our former closeness. I was overjoyed to see her and I immediately told her that we just came from baseball practice. I squinted and shook my head and she immediately got my message - those issues no longer keep him from playing a ball sport.

Leo looked at Amy and said in an inquisitive voice, "Who are you?" noticing that I am super-friendly with this person and Sydney knows her. We exchange looks and smiles, and quickly says "I'm Amy". He says he doesn't know her. Amy says "Don't worry about it." We then tell him she's a friend of his former shadow. He remembered HER alright. Tailed him for years.

I can't describe that feeling - having a "normal" day I suppose? Baseball. Grocery shopping. Leo not remembering his past as much.

The next game Leo catches a ball as 1st baseman, a close one. As the ball was landing in his glove, he shut his eyes tight. The reaction I'm more accustomed to seeing. I smile with seeing that familiar face. Leo opens his eyes and smiles at the site of the ball and confirmation from the coach's face.

The coach says, "You can open your eyes now Leo."

Leo wanted to march in the Memorial Day Parade. He had so much fun! Just a few short years ago that would've been suicide, just attending a parade. It was so cute seeing Leo and his team in their uniforms walking.

Just one more game. He's going to miss it.

Tae Kwon Do, The Bittersweet End To An Era

Today is Saturday and we are not at the Tae Kwon Do studio. Kind of weird. I'm still hardwired to hunt down his pants and shirt and belt. Today, I just had to make coffee and fix breakfast.

Leo has been taking Tae Kwon Do for 4 years. Like many parents, we used it for PT and OT reasons. I remember those first few times he went. I was so anxious after the many failed attempts at utilizing gymnastics and swimming, I passed the chore to Dad. After all, Dad in theory was in charge of gross motor.

Those first couple of months were tough, like everything new we tried. Leo was SOOHH overstimulated by the yelling (AYE!), the noise level can get very high and unanticipated. Mirrors everywhere, very confusing. Kids are moving around all directions. But we kept at it, actually HE kept at it. We saw that he really wanted to do it (he must have thought it was way easier than anything else we've offered up to this point).

Eventually he settled in and fell in love with this rule-bound individual sport.

Rules?
Individual?
Cool outfit?
Perfect.

Mom and Dad fell in love with the philosophy; To build a more peaceful world. TKD focuses on the positive aspects of an individual's personality: Respect, Courtesy, Goodness, Trustworthiness, Loyalty, Humility, Courage, Patience, Integrity, Perseverance (ha yeah, the irony), Self-control, an Indomitable Spirit and a sense of responsibility to help and respect all forms of life.

We fought so hard to find money to pay for it. We asked our district to pay for it too (one year they did).

Last year Leo began losing interest. His interest in team sports like soccer took over. He began losing enthusiasm for TKD. Sure, when we were there he enjoyed himself, but he began to complain about going. We took a couple Saturdays off, thinking some away time may rejuvinate him. That lasted a while. Getting a new belt.

The time had come to pay again for the year. Leo didn't want to renew, and talked about how he'd miss his instructor and his friends. I too felt conflicted about ending TKD. After all, will Leo's rate of development change (his coordination, his sensory integration). We sat down and talked about the pros and cons, and decided not to go back. We also realized if we regretted this later we could always join again. Leo was relieved to know he wouldn't have to start over with belts. He'd still be high red.

TKD made me feel safe. Letting go of the last piece of what I consider therapy is very difficult. I have to let go and let go of Leo a bit. Let him make some of his own decisions. Let him choose to try baseball this year even though I've already had bad dreams about that one (Leo getting hurt orfeeling inadequate, becoming resensitized in his face).

I've sat down to write the TKD instructor a caring note, but I'm just not in a place to do it just yet.

So spring soccer and spring (gulp) baseball it is.

My Bionic Hearing is Validated

So I just found this decible chart. Here are some of the items listed:
Airplane: 101db at 500ft
Leaf Blower: 82 db at 25 feet
Wake (from boat): 73db
Autum Day winds and birds: 55db
Truck's air brakes: 90db

You have to admit, those leaf blowers are the worst!