sensory gym

Sometimes I worry that I do (or will) write too many posts about negative things. It can be very therapeutic to process difficult situations and emotions by writing them out, so I often get the urge to write during times of stress. When good stuff is going on, I feel a lot less urgency to write about it. I’m busy enjoying it, and am more apt to share it verbally with others, or on Facebook. Whereas when I am dealing with the negative side of things, I am often uncomfortable discussing it with family and friends. I hope for this blog to be more balanced, and include the good stuff along with the hard stuff.

So here’s some good stuff.

Holidays. My little guy did amazing over the holidays. We had family visiting for two nights. In total there were 7 people staying with us from out of town. In years past we always spent Christmas with my parents, and my brothers would come out too. Because R’s anxiety is such that it is not feasible for us to stay overnight at my parents’, everyone decided to come to us this year. I was a little nervous about how R would do with so many people in his space. He was a rock star. When he needed a break he retreated to either his spinning chair, or doing his circuit across our kitchen counters. Several times he allowed his grandparents and uncles to play with him by him tickling him and picking him up to spin him around or toss him. It was really nice to see him able to not only tolerate everyone being there, but also have fun with them at times when he was feeling safe and receptive. This was pretty significant progress compared to previous visits.

Generally, even when he does well with visitors, after they leave he lets out any bottled up stress that he’d been holding in. We usually see a day or two of crying a lot and frequent meltdowns before he is back to himself. We were expecting this to be the case after our holiday guests left. I don’t think it has ever not happened. But incredibly, this time it didn’t happen. He was just happy! We could see he was relieved to have his house back to himself, but there was no release of stress. No crying bouts or meltdowns. I thought, okay, well maybe it will come tomorrow. Maybe he’s still holding it in. But the next day (yesterday) was the same. One very happy little R! This is pretty huge for him! It means that his stress levels and anxiety stayed at manageable levels despite having visitors. I think he was probably self-regulating really well with his retreats to his spinning chair and his comforting back and forth circuit on our counters. He is developing coping skills and that is going to be invaluable for him going forward. I am actually seriously considering buying a second spinning chair for him to use at school. Hmm…

The ball pit. R has been going to a local special needs sensory gym since he was first diagnosed a year and a half ago. I mentioned it in my previous post. They have various equipment- 3 different types of occupational therapy swings, exercise balls, tents and tunnels, balance boards, sit-and-spin type toys, ride-on-toys, a sliding board, a quiet room with a bubble lamp and fidget toys, and a play room with developmental toys. They also have a ball pit. When we first starting going there R only used a few of the items. But by 6 months in, he was using everything except the ball pit. He was fascinated by all the brightly colored balls, but became frightened if I placed him in the pit, and would scramble out as quickly as he could. A year later, and he was still too intimidated by the ball pit. Until last week. Completely out of the blue, he went for it, and he loved it. You can watch the magic here. This dude is awesome. He does things on his own timeline. When he’s ready, it happens.

Problem solving. R scores severely delayed in cognitive skills. He scores in the low 50s (the mean being 100, like on an IQ test). I have read that our kids often score well below their true cognitive level, particularly when, like R, they have low receptive language and are nonverbal. However, I have noticed that R struggles to problem solve in very simple scenarios. While it is far too soon to know if he is intellectually disabled, I think that his cognitive delays are real, and not just a matter of Autism masking his true abilities. Last week my husband and I were discussing the fact that R had not yet figured out how to push a chair or box over to a place he wants to climb. He loves to climb our kitchen counters, but requires a chair to boost himself up. We leave one for him when we are letting him climb, and slide it away when we don’t want him up there. Even if it is only 10 inches away from the counter, he would just cry, and never try to push it those few inches to the counter to be able to use it. This kind of problem solving is present in one-year-olds, but just weeks from his 3rd birthday, R was not yet able to work it out for himself. As if he had heard us discussing it last week and had been contemplating it ever since, this morning, first thing when he woke up, he confidently pushed a bar stool several feet until it was against the kitchen counter and proceeded to climb up like it was no big deal. You go, kiddo. You got this.

I realize that I don’t know your story. I realize that your child may have a speech delay, or been followed by EI after a premature birth, or beaten a devastating disease. I don’t presume that she has had a completely typical life. But I can see, at this point in time, that she is a typically developing toddler. I have seen you and her almost every single time I take my son to the special needs sensory gym. She is over a year younger than my son, and is a sweet, curious, and playful little girl. I see that. I see that she is adorable. I do. I know you wonder why I avoid you and her, why I cringe when she barrells over to us. I know you are perplexed when I don’t seem appreciative that you have prompted her to greet my son, when you have praised her for offering him a toy or “helping” him with something. I know you thought it was strange and perhaps a bit rude that I was not eager to bring my son into the rocking boat with her when she requested and you asked us.

Here’s the thing. I don’t mean to sound unkind, but the truth is, we come to this place to avoid children like your daughter. There’s nothing wrong with typically developing kids. It isn’t that I don’t like them, that I don’t like your daughter. I have two NT kiddos at home myself. But the special needs gym is a haven for my Autistic son–and I’ll admit–for me. It’s the one place where we can completely be ourselves. It’s the one place where my son is not the odd one out. It is the place where no one bats an eye when a child is happily stimming away, or has a meltdown. It’s the place where I don’t have to explain anything to anyone. And it’s the place where I don’t have to see the harsh comparison between him and his typically developing peers.

It’s also one of the few places he can enjoy due to his anxiety in public spaces. We cannot go to the library. We cannot go to the mall play spaces. We cannot join a mommy and me group or take a gymnastics class or visit the Y. But we can go to the special needs gym, and it is my son’s favorite place in the entire world. It is also a place where he is generally free from the attentions of other children, which he finds agitating.

So when your daughter runs over to us, staring me in the eye, chattering away, and shoves a toy in my son’s hands, it is all wrong here, in this safe place. He freezes, waits for her to leave him be. I cringe, hearing all the words my son can’t say from the mouth of a child half his age. I see her share attention and play pretend and it just reminds me how different my son is. It pops my happy bubble, and I feel the worry creep in. I don’t need my boy to speak or look me in the eye, I don’t need him to play “appropriately.”. Yet absurdly, it still hurts to see other children doing those things so easily, so naturally, like it’s absolutely nothing.

When your daughter asked my son to join her in the rocking boat, and you repeated the question when he didn’t look or respond, I had to explain. I had to tell you that he doesn’t speak or understand yet. But I don’t come here to explain. I come here because it’s supposed to be the place where explanations are not necessary.

I saw the confirmation on your face. You had been pretty sure he was different, but now you really knew. I watched you prompt your daughter to always say “hi” and “bye” to my son after that. I watched you praise her when she brought him things he didn’t want. I watched you caution her to give him space when it was clear she overwhelmed him. Perhaps you were just doing what you would have done with any child. But a part of me felt we were being used as props to teach your perfect child how to interact with “those” kids. I resented it. We don’t need the charity of your child’s attention.

After that I started to avoid you. I know you noticed, but I’m not strong enough yet. There are other special needs moms that can interact with moms of typical kids and it doesn’t affect them. They can graciously manage the curious glances and fishing comments of parents, and the in-your-face antics of typically developing children. They can smile at those children and mean it. They can laugh with you and share stories like it’s no big deal. They can drive home after without crying. They are strong. I’m not there yet. One day I will be, then maybe we can have a cup of tea and you will show me what I missed out on while I was trying to cope.