By Christina Maulsby
Here’s the funny thing with autism, it doesn’t care if you already have another child with autism. It doesn’t care about your financial status or what color you skin is. Where you live or if you are married or single. Autism doesn’t care about your five-year plan or what your future goals looked like. Autism will enter your world whether you are ready for it or not.
With the new CDC statistics of 1 in 59 U.S. children being diagnosed with autism, a 15% increase from two years ago, autism isn’t going anywhere soon. There’s a pretty good chance every family in America will be impacted in some way.
Autism entered our lives December of 2012 and again in April of 2013. We weren’t ready either time. And it hurt just as bad the second time as it did the first. In 2017, our younger son Urijah became extremely aggressive and started exhibiting self-injurious behaviors up to 400 times a day — head-banging, hitting, hand-biting, scratching.
Therapies, medications, hospitalization, inpatient units — we did and continue to do it all. Honestly, I think deep down we expect positive results every time. As parents we are all in, completely invested and we expect that in return. But the harsh truth is there is no magic drug. No perfect place or perfect physician. There is no cure. No matter how much we hope, pray, or think that there should be a cure, there isn’t.
So, what do we do? Do we settle, keep trying, or give up? Sometimes I find myself just accepting it. I find myself making excuses, becoming complacent, numb.
Like the many broken lamps in my house, pieces of me can never fully be put back together. No matter how hard we try we can never go back to the way we were. We have all changed. We are all different. We are still trying to heal from the past and adapt to a future we never planned for.
The other night, after the third episode of bruising aggression, I brushed myself off, got up, and returned to my salad as if it was a common dinner routine. After the adrenaline wears off I realized my leg hurts like hell. Meanwhile our older son Quentin sits eating his pizza rolls and listens to “Wheels on the Bus” on his iPad. Though ten years old, this is his normal. This is my normal. This is our life. Our life is autism, aggression, self-injury, destruction, irregular chaos.
Every morning I see the many scars on my body, I feel the amount of hair lost from being pulled out, and I’m reminded of the hell we have been through. But going through this sort of hell is now common in American families.
For all the upheaval, things are so much better than they were a year ago and I am grateful. A year ago I felt hopeless. I saw no future and every day we functioned at a 100% crisis level. Urijah has made significant improvement since returning home from Kennedy Krieger in Baltimore, however, we work hard every day to maintain the progress he has made. The program is intense and must be followed correctly at all times. His medication regimen is very strict and contains more meds than an 8 year-old should have to swallow. Everyone must work together to ensure Urijah’s success, which continually hovers around 80-85%. Every person, every therapy, every medication, they all are an important piece to the puzzle.
I will never stop hoping to achieve a 100% but I am also a realist and know that our life, like that of so many other families, is life with autism. Our life is uniquely different. Sometimes our life can hurt really bad and sometimes our life can bring a rainbow filled with smiles. This is our normal.
Christina Maulsby lives in Clear Lake, Iowa, with her husband Grant, their daughter Kaylee, and sons Quentin and Urijah. She blogs about her life with autism, aggression and self-injury at TalkingForTwo.com.