By Lisa Ackerman
Watching a perfectly healthy child regress into the world of autism and failing health can do things to really mess with your mind. It’s a front row seat I would never wish on anyone.
Imagine you have a child, everything seems great, and suddenly things change. This child gets sick, really sick. Your mind is full of questions and you want straight answers, but more than anything, you just want your child back.
At TACA, we hear this story often: “My child was developing what the baby books describe as age appropriately, and then something happened. He suddenly regressed and lost skills.” This statement represents more than 80% of the over 31,000 families that we currently serve.
I believe every family’s story and what they’ve witnessed.
My story started the same as many of our TACA families. Jeff was a much anticipated baby and a second child for our family. Everything was “by the book” and in some areas he was a little ahead of schedule. Then at the 15 month mark, he suddenly lost skills and got very sick with several serious medical issues.
Our life with Jeff became a tough journey. I don’t remember a lot of happy times during the first year. I mostly remember being terrified and feeling out of control. During the rare times Jeff slept, I was wide awake.
There was a lot to learn, and it seemed like we had to go through a hundred appointments. The terminology was confusing and waitlists seemed endless. Once we got the appointment, they rarely provided any new information or answers to my list of questions. Meanwhile, as each day passed by, our son was slipping further and further away from his family. My night stand had a mountain of books, and my kitchen table was buried in binders and papers. This is the time when things weren’t good for my family; I can only summarize it with these three words leading with anger.
It is never good to lead your life by anger. I am not proud of my behavior during my early years of the autism journey. I am not happy with how I treated the two people who were the most important in my life: my husband and my daughter. These were two really amazing people that once saw a happy, go-lucky person turn into a scared and angry individual seemingly overnight.
Autism is not easy on anyone, especially for the ones living with the diagnosis. The diagnosis and subsequent journey can be hard on the whole family. I knew I had to change my behavior we had so much to do to support my son, remain married and also be part of my daughter’s life.
I don’t know what or when things changed, but I remember looking in the mirror one morning and I was not happy with who was staring back at me. Something clicked. I could start each day with a smile, regardless of the many challenges I had to face, or keep that anger fueled to eternity. I told anger to take a hike. If my son was struggling daily, he deserved a cheerleader who would help him be the best and not a bitter and angry mom. My husband and daughter also deserved better.
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Years later, I came to know one thing, healing can happen. Anger occasionally rears its ugly head, but with the support of great family and friends, I can beat that beast away.
I took the energy that would fuel my anger and turned it around for the betterment of my family. I started with Jeff. I learned to “tame the anger monster”.
The good news is this: our son and family is so much better. He has made incredible progress. He is a walking miracle. Families need to know it does get better.
In my TACA travels, I see parents living with fear and anger daily. It’s a normal emotion but you must find a balance.
I often tell families: I completely understand the “leading with anger” concept. This is not exactly what you signed up for. You ache for your child. But please know this, it will be the most rewarding journey you will ever have. Focus on the most important accomplishment you can achieve, helping your child recover and allowing them to be the best they can.
Every day you have a choice. What will your choice be today? My last word of advice: Happiness can be found in this journey. You must still live your life and keep your family in it. In the long run, it will be worth all the effort you put in as you have your beautiful child’s face staring back at you. It is worth every ounce of your time. After all, your child is working just as hard as you are.
Wonderful. Thank you.