The truth is being the parent of a child with autism is full of constant guilt, worry, frustration, and joy.
I’ve often been asked what it's like being an autism mom. This is a question that requires more than just a few words and often can’t be answered with a few sentences. The truth is being the parent of a child with autism is full of constant guilt, worry, frustration, and joy. I’ve been so proud of Parker while at the same time terrified for her. For me the guilt and worry are the worst because they never go away and no amount of therapy or magic pill will change that. I’m really hard on myself as a mother.
I often feel guilty about so many things ; Parker’s eating habits ( I should be able to get her to eat healthier foods), her meltdowns ( I should have this a bit more under control), her speech ( I should have her in more therapies and extracurricular activities), and even for returning back to school ( I shouldn’t be in school because school takes away from the work I could be doing with Parker). The guilt doesn’t even come close to the amount of worrying I do about her future.I'm a bit of a control freak and I absolutely hate this quality about myself. If I don't have a clear-cut plan and things aren't aligning smoothly it completely throws me off.
The fact that I can't predict how much therapy or help Parker may need in the future stresses me to end.
Of course, I do realize that with any child, whether they have autism or not there is no definitive way to predict their future. In my opinion when you have a child with special needs it's a different type of worry. Parker can be a lot to handle. Her therapies can be time consuming. IEP meetings, and battles with the school to assure her IEP is being met can be grueling and draining. Who would carry this torch if something was to happen to me and my husband, I love my daughter with every fiber in my body and I'll fight for her until I physically can't but do, I ask that of someone else?
Let's not even begin to mention the social worries. Will Parker make friends? Will she get bullied and I won't know? Will she date? Will she go to prom? Will she get married and have children? The list is never ending! I could go down a rabbit whole for hours. There hasn't been a day that hasn't passed that one of these fears don't cross my mind. This uncertainty for the future is frightening. This is what keeps me up at night. I'd like to say it gets better with time, but it doesn't. It's just something I've learned to live with and I take it one day at a time.