(Image found at kristopher-raphael.com)
This is getting so old. I have been bouncing between anger, depression, and near panic for weeks. I am a single parent now, working three jobs, and trying to get through graduate school. We are a disabled family even though I do not feel comfortable saying I have a disability. I feel like myself, I feel “normal” for me. Why is “normal” for me considered a disability? I feel fine, why can’t I seem to do the things most people seem to do with ease? This is the quandary of having an invisible disability. I look like everyone else and it is assumed that I can do what everyone else can do. When I can’t do what I am assumed to be able to do, and ask for help, I get chastised, or shamed, or made to feel guilty. “If you just tried harder … .” “If you weren’t so strong headed … .” “Just deal with it … .” “Suck it up … .” These are the things I hear from people and I don’t understand it. It makes me not want to ask for help. Instead I end up suffering in silence eventually leading to meltdowns, which complicates matters even more.
Both my children and I are autistic and we all have co-morbid conditions. Between the three of us, PTSD, Bipolar II, Social Anxiety, Oppositional Defiant Disorder, Ehlers-Danlos Syndrome, sensory processing problems, dyslexia, dysgraphia, and dyscalculia all occur in my house along with the traits of Autism. You might see this list of conditions and think, “Whoa, how do you even manage?” The reality is we are a typical family. Every family has needs that are personal to them. Some moms are called “soccer moms”; I am a “doctor mom”. I am also a “cheerleading mom” and for a long time I was a “ballet mom”. You see, even though my children and I have disabilities, we still do things that any typical family does. We just do it our way. Our birthday parties are small and quiet. All three of us have our ways of calming down at the end of the day. Doesn’t everyone? We don’t go out much, because it is exhausting and also for financial reasons. We lead a quiet life and we want what everyone else wants, acceptance and understanding.
My ex-husband couldn’t take it though, for whatever reason he was not able to live a domestic life. He loves his children, but he does not like having “strings attached”. He didn’t like having to have a routine, having the same schedule day after day. He didn’t like having to plan. He wanted to live “by the seat of his pants.” Having a routine is necessary when you are autistic. A routine helps minimize anxiety, you know what to expect and when to expect it. When you live in a world that is not designed for you, routine is imperative. Some people would say that it was the Autism that ruined the marriage. I want everyone to understand right here and now that it wasn’t the Autism that ended our marriage. It also wasn’t the co-morbid conditions that ended our marriage either. There is a misconception that there is a higher divorce rate when Autism is involved. The truth is the divorce rate is about the same when it comes to Autism or not.
Study Shows Divorce Rates Are Similar for Parents With and Without Autistic Children
Yes, the medical costs of dealing with everything put a heavy strain on finances. Yes, our neurological differences made it difficult to communicate, but what marriage doesn’t have communication problems? Ours were just complicated by the fact that I would process things much faster than my ex-husband and other times I couldn’t make sense of what he was saying at all. We each needed to learn how to communicate with each other, we each needed to listen and have patience, but that took work and my ex-husband got tired of having to put in the effort.
I will not deny that the differences of our needs put a strain on our marriage. There was nothing wrong with either of our needs; our needs were just not compatible. I get tired of hearing people blame Autism for so much when in fact it is societal problems or personality conflicts or differences in perceptions that are really the issues. I am seen as someone who should be able to do all the things that I am expected to do, but I have all these extra things on top of everything else that people are not aware of or don’t see as a big deal.
This brings me back to how I have been feeling lately. I am scared. My future is uncertain right now and I have a hard time dealing with uncertainty. I feel like I am lost at sea and the winds are blowing me in every direction. I need an anchor, someone to ground me. I need to feel safe again. I haven’t felt safe in a long time and I don’t know if the fact that I am developmentally delayed is contributing to this. Between not being able to find the help I need, trying on my own to make my life better for myself and my children, trying to fulfill all the roles that life has given me, along with dealing with my own medical issues, it’s too much. I am only human and I have my limits. I will continue to look for a place to land, because I have no other choice. I will get through this, I know it, I am determined, but right now I feel so lost. I just want to hide from the world, but I have responsibilities and two young people who are dependent on me. I will not give up.