“Life gives you the journey… you create the path”
You Know One Person with Autism
April is autism awareness month. You’ve probably all heard the saying if you know one person with autism, then you know ONE person with autism. Although they may share some of the same characteristics, they are all unique and special in their own way. For some of us, our only concept of autism is portrayed by the character Raymond in the movie Rain Man. I admit that was the extent of my knowledge of what autism was when I first became a mom. I didn’t have a friend who had a sibling with autism, didn’t have a classmate with autism or had never met anyone who even talked about it.
Looking back now, I can understand why my son was almost 6 years old before we got the diagnosis. He didn’t have any of the limited characteristics that I knew about autism. He was a happy baby, made good eye contact, was very social, spoke in full sentences, and was on track meeting all his milestones for his age.
Dramatic Shifts in Behavior
The first thing we noticed was dramatic shifts in his behavior. He would have days where he was off the rails in aggression, defiance, purposefully irritating everyone in sight to the point that no consequence we gave him would seem to matter. This behavior would run for about 5 days with the last 2 days being the most difficult. I also noticed that on the last two days, he looked like he might get sick. His face suddenly turned red and sweaty and he would start swallowing a lot, although he never did get sick. On the sixth day, he would have the exact opposite behaviors where he was calm, flexible, sweet, loving and funny. I started tracking the good/bad days on my calendar. It was able to show me a pattern. This was a cycle that repeated itself every month.
Several visits and phone calls later to the Pediatrician only to hear that I needed to provide more “tough love” and be more consistent left me furious. Anymore “tough love” and I would have CPS at my door is what I thought. I don’t think that it was “just luck” that during one of my many visits to the doctor he had a “sick day” experience right in front of her. Finally, it got her attention and after a 24hr EEG, we discovered that he was having mini frontal lobe seizures that weren’t always visible to us. The escalating behavior was my sign that a seizure was coming and the calm, quiet days was the signal that he had had a seizure and was exhausted. Medication helped manage the seizures but some of the challenging behaviors didn’t go away. Shortly after this came the autism diagnosis.
“It taught me that I was capable of more than I thought I was, to trust my gut and not to give up.”
This three-year struggle was going to be the foundation that I needed to move forward into the next stages of parenting a child with a disability. It taught me that I was capable of more than I thought I was, to trust my gut and not to give up.
You know your child better than any doctor, neighbor, relative or friend. You will forever be their best and most important advocate. In elementary, I thought the hardest thing was getting the IEP goals addressed. Then with middle school came the constant reminder of how the gap was widening in terms of how he struggled socially. High school was spent focusing on just passing the classes required to graduate with a diploma and trying to figure out what life after 18 would look like for him. Now, as a young adult, we are focusing on life skills to live as independently as possible and planning for his future.
Every stage I went through I thought was the hardest at that time including the stage we are in currently. Now I can look back and without a doubt recognize that every battle that I fought through with him and for him during those earlier stages was worth every tear that I cried.
Seeing the Progress
Journaling/documenting my thoughts, plans, ideas and concerns have provided me with the evidence I needed to see the progress I couldn’t see at the time. This information has helped me determine what is real verses what I felt. Some days it doesn’t FEEL like we are making progress, instead like we are sliding backwards or stuck in mud. Fear and anxiety want to take over my thoughts.
Those are the days where I try to look back at where he was and how much he has already accomplished and just rest there. Slow progress doesn’t mean no progress. One baby step forward is still… one step forward. Sometimes I want to sprint when I need to walk, and I need to be ok with that. Each time that I am able to recognize the progress he has accomplished; it refuels me and gives me peace even if it is only temporary.
What I Can Control
One way that I’ve grown over the past 22 years is that I’ve learned to accept what I can and cannot control. In the past I thought that the harder I worked or the more I researched that I could produce the outcome that I was looking for. Now I invest in building a good team of doctors and therapists who support and share the same vision of his future that I have and focus on what I can control.
I can control the environment in my home, how I talk to him, how consistent in my discipline I am, how I follow through from words to actions, how much I try to speak his love language to him and how I take care of myself.
One Day at a Time
I’ve learned that every new idea or thought you have is worth exploring and pursuing. You never know where it will lead you. I tried every type of intervention that I found to be credible and put 100% into it. Not every idea produced the results I was hoping for but some of them lead me to great doctors and therapists that I needed on my team and for me that was an unexpected blessing that I needed. Take time to reflect on where you are, how far you’ve come and where you want to be. Seek and explore every possible resource you can and take it one day at a time.
Cindy lives with her husband Mike and their three children in Indiana. She started her career as an Interior Designer but wanted to stay home to raise her children. She developed a passion for helping children learn and currently works at Junior Achievement of Northern Indiana in Finance Park, a financial literacy program for teens. Their family likes to stay active through hiking, biking and traveling.