I have seen so many self-righteous and judgmental people on blog sites and social media. I’ve seen people who are on the spectrum, people who have diagnosed themselves as being on the spectrum, people who claim to advocate for those on the spectrum, and other parents who quite obviously know better than you what you should think, feel, do, etc. etc. etc. I have seen fights over tags, over articles posted. I have seen people screaming not to invade their “safe space,” then invading your safe space to tell you what a horrible parent and human being you are for having your feelings. I’ve seen people attacked for being human, like anyone who would have feelings about something they didn’t sign up for but threw their whole lives into when they were called to is somehow selfish. I have one thing to say about those who expect this journey to be all about my child with no emotional baggage being packed in my own life: I am not a robot.
I did not come pre-programmed with a set of adaptive skills that meant there was no adjustment necessary when I sat in the doctor’s office at Children’s Hospital for the first time when they called the social worker in to tell me that my child was very sick and would lose her skills and most likely be intellectually disabled the rest of her life. I did have to grieve the child I thought I had, and the letting go of the hopes and dreams I had for her. I did have to live, experience, and let time pass as the mother of a disabled child to get to the point where I could see and appreciate the wonderful uniqueness of her, and feel fortunate to be one chosen to experience life with someone who has taught me more than all of the rest of life put together ever could.
If I had not concentrated on the negative issues when they needed to be fixed who would have? Who would have quit their job and farmed their other children out to family members for experiences I couldn’t give them and researched every medicine and therapy and diagnosis that came our way? Who would have stayed up every night counting seizures, changed diapers for 7 years, given up their house, their money, their marriage for more than three years, their other children’s sleepovers and sports and birthday parties? Who would have given up job after job when she needed me and any hope of a career to become the unpaid caretaker of an adult with a disability and learned to find the positive and good in that? How would I have ever worked through the negative feelings I had to have as a human being if I had not acknowledged having them?
When my daughter and I were younger I belonged to so many support groups it felt like it was my job. I, for one, am grateful that we now have the internet and online support groups and places where we can feel safe and understood from our own homes. Even if no one ever reads the blogs I write, I am grateful that I have a way to say what is on my mind now and be able to work through the feelings and get them out. I am as much of an individual and just as much a human being as my child, and my journey is just as relevant and my feelings just as valid, and they are not the same as hers, or my husband’s, or my other children’s, or anyone else’s.
Everything is not a battle of self-righteousness. I am strong, experienced, adaptable, and diligent. Every day of my life is about my child. This is MY safe place, and I won’t be diminished in it.