There are days when I feel like I really have this “autism mom” thing down. We plan ahead, we walk R through different scenarios of how her day can play out- if it’s not a “normal” day. We have back up plans for the back up plan. I have even gotten pretty good at being able to foresee a meltdown coming and remain calm in order to diffuse as quickly as possible. Of course I am raising an Aspregers teen so nothing is ever that easy.Just as I start to settle into the calm, that’s the day that it all scome barreling at me at once and seems like it’s just all too much to bear . That all of the good days meant nothing. That the weight of the constant worrying is inevitably going to wear me down so much that I can’t see the good days anymore.
I think it seems so hard sometimes because there’s no one to talk to. Sure you can talk to friends or family members but no one understands. They all try to claim that they do but they don’t see when R has a knee injury and she’s supposed to use crutches but won’t use them at school because kids call her names. They can’t fully understand what’s it’s like to watch R’s volleyball coach treat her so unfairly and bully her, and pull her off the court for no reason. R crying only to be told told she can’t play anymore until she tells coach what’s wrong. Something she just cannot do.( Listen, I would give ANYTHING for my kid to always be able to tell me what’s bothering her but it’s just not possible.)
No one sees the sadness in her eyes when she can sense that people don’t like her or when they tell her she’s annoying. They don’t witness her asking me to pick her up for lunch because she doesn’t have anyone to sit with. Or the days long anxiety if there is a party and they will be serving pizza and and that in her mind everyone will make fun of her for removing all the cheese. Don’t even get me started on the lack of understanding about the fact that there are only about 10 foods she will eat.
They don’t understand that she is at higher risk for suicide. They don’t know how that weighs on me every time she’s having a really bad day. Instead friends say” oh that’s the age. She will be fine”. Raising teens is hard. It’s always been hard. It was hard for my parents, but it’s different now with social media and constant access to peers. It’s different for me. I have read that the reason the teenage years are so hard and that kids make so many mistakes is that their brains aren’t fully developed. That’s the neurotypical teenager, add an Aspergers teen in there and you have a lot of extra parental anxiety! So while yes, we may all be raising teenagers – it’s not the same.
No one understands that there is no spontaneity in our lives. Everything must be well thought out and thoroughly explained. Before she went on a recent volleyball trip we had to take R to Cheesecake Factory a week before because that’s where they were going the first night and she had never been there before. Normally we don’t try new restaurants but we explained to her that this had been set and we would go there so she could study the menu and decide what she would eat ahead of time. Luckily, this worked and there were no issues.
Every year at this time parents get excited for summer and that they don’t have to worry about schedules and routines , they don’t understand that summers in our house are miserable. With no routine and no schedule, R’s life is chaos and she can’t deal with that. She NEEDS the schedule and being a working mom who also runs her own business doesn’t always allow for a strict schedule in the summer. Problems arise, schedules have to be adjusted. Summers tend to be the hardest for us.
So while friends and family mean well when they tell me they get it-they don’t. Its not their fault. I do believe most of them mean well. Sometimes I just wish someone would say “-I can’t possibly understand what you deal with but I am hear to listen.” Not say “Oh I get it- its the age. We have all been there.” Uh-no, you haven’t but some people will never understand that. That’s my issue to deal with, I suppose.
It’s been a tough few months. We are coming off of a very rough weekend and every time we get through the worst of it, I seem to fall apart and feel sorry for myself. I think I need it to allow me to move on and get ready for the next tough time. If you are reading this, chances are- you get it,too. Don’t beat yourself up for throwing yourself a pity party once in a while. You deserve it. Its taken me a while to learn this but I know that its okay now, you just have to know when to straighten your superhero crown and move on!
Words to live by.
JB
I will never fully understand what you guys are going through, but I’ll always be available as a sounding board. Raising teens is tough, but what you guys are going through is a whole new ballgame!