Unplugged

I have a blog about Autism for self indulgent purposes. 1. It’s my therapy. 2. It makes me feel good when I get messages from families that say “I needed to hear that today.” 3. It’s a way to stay both accountable and to stay the course. I have a “live and let live” stance when it comes to parents being able to make choices they feel are best for their children, families, and overall day to day sanity.

A choice I made from the beginning of knowing Caleb had Autism and assessing where he was on the spectrum of severity for ASD, was that we would not use tablets except as needed to communicate. There was a time when my son could not play, could not speak, and had minimal environmental awareness of others around him. I made that decision because he needed to have play skills. He needed parallel play, pretend play, and cooperative play with other kids. He didn’t need to play because it made it easier to Christmas shop, he needed to play because play is the basis for good communication. Without learning cause and effect and object function and being able to have the multisensory feedback of playing with actual toys, his communication efficacy was going to be affected.

At Caleb’s 2nd birthday party someone went to say “bye” to him and at mere inches from his face, he didn’t attend to their presence. At Caleb’s 5th birthday party he verbally interacted with others, shared his Legos with a friend in the living room, made eye contact with everyone singing “Happy Birthday”, and was all smiles having a pool full of kids swim around him. He needed to develop social skills. Not because I want him to blend in or to grow up to have a certain caliber occupation- but because no matter what he chooses to do in life he’ll ultimately be more successful if he can do it while looking at someone’s face and giving them a gracious smile.

Language is best learned naturally while receiving language input from others in our environment. Caleb is doing that. There was also a time when Caleb needed an AAC app which is why he does in fact own a tablet, but that is the only thing he’s ever done on it. He needed to know that machine was to help him find his voice and not be confused as to why he couldn’t also watch YouTube. I also didn’t care until recently if he could count or recite ABC’s because those skills did him no good if he didn’t have functional language to request, protest, or tell me he was hurt.

I am not anti-tablet or anti-electronics. We watch tv, we watch YouTube, and I did let a babysitter do some puzzles on a tablet with him one day. He started to get a little compulsive with it with her that day so she stopped. That’s another thing about Caleb’s particular seat on the Autism Spectrum- compulsions and OCD are a truth for him with certain things (while he remains remarkably flexible in things like schedule and transitions. You never know what you’re gonna get!). I didn’t need a tablet to be a compulsion for him. I didn’t want to fear losing the charger or wifi access or the power going out. I think that there’s a way to use tablets and to also develop play and social skills and do agree there are some potential awesome academic benefits. The auditory output from speech generating devices can be really helpful in promoting verbal language development also.

We simply decided, as people decide it’s a good fit for their families, that it would not be a good fit for us. That doesn’t mean it’s been easy. At one time I couldn’t say “no tablet but here’s a coloring book” because he shredded everything and colored all over the walls. So that meant first, we had to spend so. Much. Time. modifying behaviors, learning new skills, and finding appropriate ways to satisfy those stims. This is why from the years of 2014-2017 my home was a complete disaster.

It wasn’t easy. It’s taken years of work but I’m happy where we’ve landed. It’s not perfect. Just yesterday he was getting ridiculous over Youtube so the tv was turned off. Cold turkey, man- you get nothing now. Today’s he’s colored and played and done lots of other fun things. We go to restaurants, stores, festivals, etc. and it takes massive amounts of preparation, but it doesn’t require a charged phone for him to do what we need him to do. There are still meltdowns and cringe worthy moments, but I quit looking over my shoulder and being afraid a long time ago. We’re prepping for our first parade right now which is like the holy grail of Autism outings.

It’s been hard work but it’s been worth it. And I always support every single family’s decision to do what’s best for them. If you decide to unplug though, know that no matter how many times you have to leave the frozen food section of Kroger or take a walk outside while waiting for your food at the local diner, you can absolutely get there.

Love and Autism,

Erin

Autism, Party For 1

There’s a lonely side to being a parent of a child with Autism that I haven’t talked about much. When I try t process it, I feel it comes from two places. 1. Feeling left behind while my mom friends celebrate experiences we may never have. 2. Feeling angry watching my child being overlooked or missed out on.

We went out to eat once and Caleb’s needs were best met by moving our place away from the group and eating within proximity but at a different table. No one brought their plates over and sat down and relocated their seats next to him. He was sensory seeking, he needed more space, but he did well. The point was he needed a small change in order to be successful but it was enough for him to end up lonely and on the outside at lunch.

Sometimes when we go places and go on visits, Caleb is more observed than interacted with. He may play a little differently, a little compulsively, have a problem with personal space, and be sensory seeking, but he tries. With other kids he can share and put his compulsions on hold. Even with things that are highly preferred. With adults he likes to comment and show off but even in those instances he mostly gets observed from the couch. It makes me sad to see people miss out on how freaking awesome he is. So, he plays alone. Which sometimes he truly prefers but other times when I know he’d like interaction, it’s painful to see him end up lonely.

It’s a hard feeling, this “Autism, party for 1” feeling. Someone asked me about us growing our family and I had to respond honestly that the desire to do so was partly influenced by Caleb. He needs more people that I can be certain are on his side. I need to know in a world where I’m not here, that he’s going to have a tribe.

We keep at it, though. We mingle, we venture out, we put ourselves out there. We hope to move our corner booth reserved for Autism to a seat at the head of the table right in the middle of the banquet hall one day as more progress is made. From where I’m sitting though, the view is pretty incredible.

Love an Autism,

Erin