I wrote this blog as a Guest Post for Autism Through a Mother’s Eye on FB. I post it here for those of you who may need to read it too!
Reality is there are times we feel alone in our journey. Reality is we aren’t alone in this journey. We are a family that has dynamics that many families do. We have 2 kids. My husband and I have been together almost over 20 years and married for close to 17 of those years. And in our house, we have siblings that fight. We have siblings that fight due to one trying to help the other. Sometimes they actually let the other one help them. Lots of what we deal with is common things amped up on some hyper focal point of no return.
I listen to my friends talk about things their kids are doing. Mind you most of them don’t have children that are on the spectrum. There are times though, I think about how sometimes it would be nice to worry about different things. I wish I didn’t have to consider whether Em is able to go to a family function because she is sensory overloaded. I wish I didn’t have to think about Em’s situation when functions come up. Sometimes, I might overlook something and it is big brother Christian to the rescue. It’s so hard to call a friend last minute and say you can’t come. Eventually, the invitations stop and you feel alone.
No we struggle with it all. There once was a time Christian was wanting so desperately for Em to show him that she loved him unconditionally without her having an unkind word or meltdown ten minutes later. He won’t say it, but you see her words cut him deeply. We all wanted her to have a few girlfriends that invite her to oodles of functions, and trying to balance them out. There is always that worry about her taking medicines in the morning or at night. Our dream was to find balances in our life instead of the hyper-focus of one item until it runs its course of interest without causing meltdowns or tantrums.
Reality felt like it’s not going to change. Yet, it did in its own way. Em isn’t as hyper-focused as she was. Now, she hyper-focuses on several things at one time. Our friends understand our situation better and some of them have started to do things with us again. I don’t always say we can’t come or cancel. We may go and stay for a bit and leave early but we make an appearance. Em has developed coping tools and skills to deal with her anxiety and sensory issues.
The biggest thing that changed was Em and Christian. They love each other. Every few weeks it becomes more and more clear that they are going to be ok. Christian takes care of looking out for her and she tries to communicate with him. They have found a relationship and figured out how to embrace Em’s autism. They fight for awareness and acceptance. They both advocate. It’s amazing to see them work together, when they can.
So while our reality is not perfect. It is our life and we have to live it. And if Em and Christian can learn to be happy in their little world of chaos and figure it out then we can do our best to make it work for them. Slowly, they are getting along more and more and are even somewhat friends. On those days we start to feel alone in the journey all we have to do is get on the internet. Social media makes the world such a smaller place, giving us support systems we never knew before. Now we know we aren’t alone, even when it feels so lonely.