Leading Up To A Diagnosis

A recent conversation triggered past memories of outings with my now four year old son. He has autism.

In the early days of our autism diagnosis, I heard and read about meltdowns. Before we received news that my youngest son has autism, his behavior left me feeling confused and helpless. I couldn't seem to tame his behavior. From the outside he looked like an untruly child always on the brink of a tantrum.

My husband was just as distraught over our son's strong willed antics. Along with scratching our heads wondering what was going on, we were stressed out from the screams that echoed from daylight until dark.

Our little boy would slam cabinet doors, throw random objects for no reason, hit me, and scream. He had no words. This was his only way of communicating. Of course, at the time we did not know that. We thought he was simply being defiant.

Thankfully, God had prepared my heart and we pursued an autism diagnosis. It was no surprise when the answer came in the form of referrals to specialists and testing.

I was relieved to have answers and my son was now getting the help he needed.

Understanding Underlying Issues

We soon learned that not only does our son have autism, but he was also diagnosed with sensory processing disorder and apraxia. I had been reading about sensory issues in children with autism, but the apraxia came as a surprise. It would be just as important to address as dealing with the autism itself. All of these things combined placed hurdles on our path to understanding what made our child tick. Once we learned more about the underlying issues, it helped us and our son overcome the crippling meltdowns. We were better prepared to respond to a meltdown instead of assuming our child was just acting out in defiance.

A Meltdown Looks Like A Tantrum

Finally, we had answers! Now, our biggest challenge was discovering how to best stretch our son little by little.

When a parent of a child with autism begins their journey of lovingly stretching them outside of their comfort zone, meltdowns will happen.

This is the margin of life with autism where parents get caught in the trap of fear, exhaustion, and pain.

• Fear. It stems from the long days spent sequestered inside of our home listening to ear piercing screams and slamming doors. This is not normal behavior. How are we going to take our child into the world and expect a warm welcome. We know how stressed we are and the thought of a disruption in a public arena is just too much to consider.

• Exhaustion. Once we get past the fear, the public humiliation of having to carry, drag, or pull our child to the car is unbelievably hard. This was the hardest part for me. We would go out and I already knew what was to come. I would have to pray and ask God to strengthen my heart and give me courage because I knew that I would be carrying a thirty pound little boy out the door kicking and screaming. Plus, the stares seemed to burn their way past my tough flesh and would pierce my heart. Inside my mind I would be screaming for someone to "Please just open the door!" Because my son was so prone to dart off in an instant, I had to be right with him. There was no pleasure or leisure in any of our outings in the early days of autism. They were strictly used to help me to continue to get past my fears and to stretch my son outside of his.

• Pain. Oh, the pain. Who knew that autism could cause a level of pain in my heart that I had yet to experience in the thirty four years of my lifetime? The pain wasn't from having a child with special needs. It wasn't from watching my son struggle to learn how to blow out of his mouth because his apraxia had taken this away from him. Yes, it was hard to watch, but I had hope that God would use his therapies to help him overcome these challenges- and He did! No, the pain was from the overwhelming lack of understanding from outsiders. Autism is an invisible disability. To see a child on a playground scream and melt to the ground would lead many to believe that the child's parents obviously lacked skill or discipline. Watching a "normal" looking boy hit and yell at his mother is just too much to handle for so many. Once I realized how big the gap was from awareness to acceptance, my heart ached for all of the families like ours. Sometimes, I would catch glimpses of hope from strangers. A kind soul would hold the door so I could keep both hands on my little guy in the midst of a meltdown. If not, he could dart out in traffic and get killed. Yes, this is a huge possibility for a child that has no clue about safety or boundaries.

Meltdowns are real. They are not tantrums. Our children cannot be spanked enough to whip them into shape.

Our guy has improved by leaps and bounds. There are still times when these feelings rise to the surface, but God has brought so much peace to my heart. He has helped me place blinders around myself and my son so we can move forward with care and love.

Awareness can bring acceptance. Until we are all willing to step outside of our usual thinking on how things are supposed to look, or how children are supposed to act, then we will continue to be stuck. Families of children with autism will get lost in the seclusion and darkness of the margins. We all deserve a chance at this life.