Normally I try to be really positive but sometimes I think you need to just tell it as it is and talk about something that I deal with on a daily basis. It’s frustration!
Honestly, I get frustrated at some of the things that us autism parents have to go through.
Our life is already complex and sometimes other people (perhaps without meaning to) make it even more difficult and make us question every single decision that we make.
In my ideal “dream world” I wouldn’t have to do some of the things that I do. I wouldn’t have to make sure that breakfast is at the right time so that it will get eaten prior to going to school. I wouldn’t have to make sure that everything was in the right spot and together in the morning so that my child would get off to a good start and not have to deal with anything “extra” before his day begins.
I would be able to drop my kid off at school without waiting and looking to make sure that he got in the door.
I wouldn’t have to explain the same thing to people for what feels like the hundreth time. I mean do they listen?
I wouldn’t have to compose separate emails to all four of my son’s teachers why my son couldn’t complete his homework last night because he was on sensory overload.
I wouldn’t have to ensure someone in public giving me a glare because of something my child was doing or saying that perhaps was socially inappropriate.
I wouldn’t have to spend what little time my husband and I have together talking about another “autism” thing instead of being together doing something fun.
I would be able to actually do something fun outside of the house without worrying what may be going on at home.
All autism parents have all of the usual things x 1000. Things that are so simple and not given a second thought like just getting ready in the morning takes sometimes careful planning.
We can’t normally just “drop off” our kids at an activity without having a plan for them and communicating their mood and what could set them off that day. Sometimes our kids are not even allowed to enroll in certain community activities. We can’t or we don’t always feel safe leaving them alone while we run to the store to pick up something quickly even if they are of age for us to be able to do this.
Sometimes I get frustrated when I hear other parents complaining about things like their kid didn’t get the mark they expected or score that goal in the game. Hey, I am glad if my kid actually goes to class and listens for a portion of it. I am happy if my child is even allowed to participate or engage in some of the team activities. Don’t get me wrong, I am not blaming these parents at all. This is their life and these are the issues that are important to them. I hold no grudges or ill feelings towards anyone like this, but for me personally, I feel frustrated with all the extra things I have to do at times just so my child can be included or things that need to be done so that my child can get through the day.
Today, my son woke up and said he was sick. He usually doesn’t try to get out of school because he really likes school but he said his throat was hurting. I had a massage booked for the morning which I so desperately needed because my neck had been bothering me for two weeks. I got up, made his lunch, got his medication ready, prepared his breakfast and then I realized that he wasn’t going to go. I also had a lunch booked with a friend who I had been trying to see for a month and I had been looking forward to it for a week. Now I had to cancel.
I thought about actually making my son go to school so that I could do these things. I was trying to make it happen, but then I looked at him and realized that his day would just end up being a disaster. I was thinking selfishly…so I reclutently made a few adjustments to my day, but I was not happy. I was frustrated!!! So frustrated that I just wanted to scream!
Possibly, another child may have been able to push through their day to at least get the work at school and maybe come home early, but we my son is sick or a bit under the weather, it can actually make him very distressed at school and unable to concentrate and could cause some sort of meltdown. It was best for all of us if he stayed home and just tried to feel better.
Autism parents are kind, patient, flexible, humble and have huge hearts – all of them that I have ever met. We have to make ways where there is no way. We adjust our schedules constantly sometimes moment by moment. Fun, well that doesn’t happen a lot. Our lives look different and you know what, that’s okay. We love our kids and we want them to be happy and successful just like everyone else.
I’m okay and very happy with my life, but I do get FRUSTRATED! I am human too and sometimes just expressing this out loud is good therapy!
So as much as I want to write something uplifting today, this is not going to happen and I think we need to be allowed to express our feelings – all of us, no matter what they are and no matter what our circumstances.
Being real is really living and I want to be as real as I can all of the time whether it’s good or bad.