Little Man had intense, one-on-one therapy for over a year when he was first diagnosed on the spectrum.  He reached a level the services at school were sufficient and we were moved to an as-needed basis with his therapist. He hasn’t seen her in nearly five years. But given the changing social dynamics he’s encountering, the fact high school is looming, and because of his heightened anxiety and thoughts of self-harm the last month or so, we decided it was time to add his private therapist back into the max.

We saw her this morning. I’d forgotten how calming she is. Her voice and manner put me to ease immediately. She’s the perfect level of letting him wallow in his opposition, while at the same time insisting upon certain behavior. She remembered him, remembered our family, and while not happy for the circumstances, was happy to see him again and hear how he’s doing. He refused to talk or answer any questions initially, but about twenty minutes in, we were talking about high school and he joined the conversation. It was fairly easy for her to dialog with him after that.

He asked to see his school therapist once as week in addition to his outside therapy. That’s not something he’s expressed before, but hey, if he wants it, I’ll ask for it. We have his IEP meeting next week – he is required to become part of that process now – and we want him engaged, accountable, and to contribute by stating his needs and wants. This was a good first step towards that end.

His therapist asked why we were there. I told her the discrepancy between his social and emotional skills and that of his peers has widened to a very obvious place once again. We want to help him bridge that gap. Also, the anxiety and depression levels have risen in the last couple of months – we’re seeing a return of the anger and tears to a place we haven’t dealt with in a long time. And then there are the thoughts of self-harm. He needs an outlet, a safe place to talk. Therapy gives him that. Thank God for good therapists.

So we’ll add this back into our routine, once a week, for a couple of months and see where that puts us. I just need to know my boy is okay, and on a good path, with good tool in his toolbox that he’ll actually use.


The expert

Often, when dealing with therapists, psychiatrists, school social workers, speech therapists, and teachers, I forget that *I* am the expert on my son. I hadn’t even known until a friend told me a little over a year ago that I am the expert on Little Man. I’ve been feeling really helpless with what’s been going on with him at school the past couple of weeks. I don’t like feeling that way. I’ve been waiting for someone to tell me how to help him, what we can and will do to make it better for him, his teacher, and his class.

Today, I volunteered in his classroom for the first time this school year. I guess I forget all the things I know and do with him on a daily basis. He had been starting to go sideways before I arrived. Within thirty seconds of walking into the classroom, he realized I was there, and with two hand motions and one shake of the head from me, he had himself back under control. I was there for forty  minutes. Afterwards, I had a quick chat with his teacher and gave her three simple things we do at home. I was the expert in that moment, and she was open to everything I said. This momma breathed a HUGE sigh of relief. I had been so anxious that she might be close to done with him. I don’t know why I was so fearful…I know her, and I know she’s not like that. But there’s always a fear that someone, even a teacher, is going to decide it’s not worth the work and effort it takes with him. I want to practically beg everyone who  meets him to just give it a chance, because he is so amazing beyond all that hard work.

He’s had two good days in a row. I can’t stress how much I am praying we’ve turned a corner. I have been in full panic mode, with anxiety levels at an all-time high. I will be gone to a March of Dimes conference five days next week. Just thinking about being away from him with his behavior all over the board was making me want to throw up.  Today, I am hopeful.  He can do it. We can both get through those five days successfully.  I’m prepping him, I’ve told the staff at school, and he will see his therapist the day before I leave.

Remembering that I know how to help my child is empowering. We have, after all, been working at this his entire life, even before he was diagnosed and thrown into the world of autism. I don’t have to have a degree, be a therapist, a special ed instructor or a psychiatrist to help him soar. I’m his momma. That automatically makes me an expert on Little Man.

OT, letting him win (and lose), and he’s growing up

So I have spent the Summer – since our return from Hawaii, and my own personal meltdown in Hawaii – trying to let go, to let him do it, and let him be the big kid he is working on becoming. Some days are easier than others. He’s had quite a few wins, and a few losses. Letting him “lose” is hard. It’s painful. It’s a struggle to watch him struggle. I want so desperately to intervene, to fix, to manage. Currently, he’s having an episode over a Lego set that isn’t going together easily.  My natural instinct is to go over there and help. But he must learn to a) manage his anger and frustration and b) ask for help when he really needs it. So here I sit on the other side of the room, just listening and trying to contain myself. 

I have come to realize therapy is as much for me as it is for him. I spend the first 5-10 minutes with his therapist updating her on how he’s doing at home. She gives me direction and helps, things to think about. We’ve spent quite a bit of time this summer talking about me enabling him, and in the process of my micro-management, making him somewhat codependent. Stomach-punch, right? But it needed to be said. Today she said something that again has me saying, “Hmmmmmm……”  My pain over seeing him in pain is hurting him. He has been apologizing multiple times a day for the past few months, whenever he has an episode, outburst, or sideways behavior. I know it is because  he sees my frustration and hurt. I try, honestly I try, to keep my anguish over his autism from his sight. But sometimes it is just overwhelming. Her words today reminded me that I have work to do too. I cannot let my hurt over his hurt affect him. He *is* very capable of so many things. And he is learning and developing in so many ways. We both take a step backwards when I fail in a response to one of his fails.

He is my baby. As much as I swore I would never baby the baby, it just seems to happen naturally. I need to let him grow up. I need to let him be a big kid. I need to let him work things out. He is capable, if I will just let him be. He will fall. He will make mistakes. But that is part of learning and growing. How will he ever learn to recover from failure, and/or fail gracefully if I never let him fail?

He has had a lot of “wins” in the past week. He’s taking on more personal care – things I used to do because it was just faster and easier for me to manage.  They are little things….making his own bagel (which includes putting cream cheese on the bagel), taking his laundry upstairs and hanging up his shirts, letting the water out of his bath….These are all things I’ve done in the past. In stepping back and letting him do even the small things, he is already more confident and willing to take on bigger things.  He is growing up. At nine, my oldest seemed so much older than E does now. But if I really think about it, E is doing great. He’s making great strides. And I am somewhat relieved. He will grow up. He will not always be stuck in this exact spot. It gives me confidence.

At the moment, he is excited for school to start. He has been asking to go school-supply shopping. His anxiety is way lower than we expected, especially considering the facts he will have a new teacher for the first time in two years, and will not be with most of the classmates he’s had for two years.

We did hit a minor speedbump….He has refused to learn how to ride a bike (without training wheels). So in an effort to help him keep up with his siblings and friends as they pedal around the neighborhood, we bought him an electric scooter.  He fell, rather epically, the other day. Nothing broken, but some decent knee and elbow scrapes. He didn’t want to get back on the scooter. He is convinced he is going to fall and get hurt again.  He likely will fall. That’s part of childhood….you play,  you fall, you get scraped up, but you get back on the bike, scooter, skateboard or whatever, and life goes on.   But his anxiety prohibits that get-back-on response. We had to push to get him back outside, and even then, he wouldn’t get on the electric scooter. His therapist has suggested occupational therapy to help him with his anxieties. Sigh. It is another piece of the puzzle we have been missing, and just another note that we are on a different, uncharted journey.

Wins, yes. Losses, certainly. But we’re both learning. And he is growing up.