Holidays always have a way bringing in to focus just how isolated my family really is. Christmas celebrations for us do not include a house full of people enjoying spirits and New Year’s is usually spent at home watching the ball drop during the Dick Clark’s Rockin’ News Year’s Eve Party on tv. We are boring people by outside standards. It’s not that we don’t crave the company of other people – friends/family that visit, parties, gatherings. We have Ryland and anxiety issues and a complete lack of social interaction to begin with. It’s lonely being the parent of a special needs kid.
Ryland doesn’t like crowds. It’s too much stimulation for him. It doesn’t have to be a large crowd either. He runs from any place that has several people together talking loudly. We have tried to have parties in the past and he ends up locking himself in his room, coming out only when he needs something – usually naked. Very uncomfortable for anyone who isn’t used to seeing a skinny teenager with a scraggly beard running around in nothing but a pull-up. There was one time at a BBQ we hosted that he literally mooned all our guests in the back yard through the sliding glass door. Then gave them a quick view of his family jewels. Awkward!! And because he can’t be a real part of the gathering, I feel as if something is missing.
I’m not far off the mark – we are missing “normalcy.” No one else we know deals with that kind of behavior from their children. Even in the special needs’ community Ry is unique. Some understand and roll with it, most though get a glazed look of displeasure that stabs at my heart. Maybe I’m a bad mother. Maybe we should have done more for him when he was younger so that he could be calmer and more controllable like the other kids with autism that I see at therapy. Maybe I’m too sensitive. These are the thoughts that run through my mind when I start to compare our life to others.
The isolation is of my own making. I got tired of trying to explain behaviors. Tired of being so anxious trying to keep up with him in social situations – always watching to make sure he didn’t get into something he wasn’t supposed to in a new place; watching to make sure he didn’t wander off and disappear; watching to make sure he didn’t start pawing at random people trying to get their cell phones or whatever desirable object they were holding. We are working on his behavior in ABA (Applied Behavior Analysis) therapy, but it is a painstakingly slow process. We are only at the tip of the iceberg. Which goes back to the “maybe we should have done more when he was younger” line of thinking, even though he wasn’t eligible for that kind of therapy due to no diagnosis.
Guess I should point out that we do not live anywhere near family. Being a military family, we have found ourselves far away from our kin for quite some time. There was a period where we were only four hours away – which was wonderful – but even that wasn’t enough sometimes. We are on our own. Travel with Ry is difficult. Because he doesn’t sleep regularly, staying in hotels or with family is exhausting as I get little to no sleep. At home he is comfortable and secure in his own room at night. When we travel there is no way to keep him locked in a room safely – new places (even family member’s homes) are opportunities for him to explore beyond the safe zones. He has been known to sneak out of homes/properties all together, wandering off on his own. Once when he was younger, we were visiting my mother in Florida, staying at her and my step-father’s condo when someone left the sliding glass door cracked. Ry pushed his way through and was gone. It can happen within seconds. We found him about fifteen minutes later, thankfully, with some people who were trying to talk to him to get his name. Of course, with Ry being non-verbal they were getting nothing out of him and I think were just as relieved to see us as we were to see them. That’s just one episode. There are many, many others that include breaking lamps, nearly starting fires, etc. Travel is not relaxing for our family. So, I reiterate – holidays with family is pretty much non-existent unless they come to us. Which they don’t – except for Thanksgiving. My father and step-mother visit every year. I treasure that time!
At this point, having friends for me has been extremely difficult. The friends I did have moved away or have drifted away because I don’t have the time (or babysitter) to hang out with them. I have become completely anti-social. Not because I really want to be that way. It is more out of circumstances. I am a part of no activities outside of the home. Anything I do, must be done while Ry is in school or at therapy and with getting him to those therapies (which includes picking him up from school early three days a week), the window for outside play dates for mom is pretty small. One of my New Year goals is to get out more – find something that gets me more engaged with people outside. I miss having friends.
As we enter 2019, I have hope that things will get better. Ry is making headway with his ABA therapy and we should be able to start taking him out for “field trips” soon. There will be trips to visit family – which will be stressful but gives us another chance to work on our social skills. I will be trying my best to be more social again. With any luck, next Christmas and New Year we won’t feel so isolated.