Not Forever

I met Elizabeth Vesely in 2011 at a training retreat for The Son-Rise Program. It was immediately apparent that Elizabeth was fiercely determined and motivated by her deep faith and intense love for her family. A true fellow warrior mother! Through the years, we’ve “met up” in various online forums. I always enjoy reading her blog and checking in with her. I am so grateful to her for this guest post, her tremendous strength, and her message of hope.

If there was one thing I wish someone had told me again and again from the beginning during my journey with my child on the Autism spectrum, it would be that, if you are doing something and researching for answers, whatever difficulties your child faces may not be permanent. With the Autism diagnosis came a sense of permanency based on the severity of his condition, as if the behaviors and problems that earned him that diagnosis are forever, and the best we can do is to cope as best we can. Shut the door on a future, Mrs. Vesely – this is a whole new world.

Someone even gave me the book You will Dream New Dreams. I decided to ditch the book along with its ideology.

We have been working with my son Josh since he was 6. Typical therapies, early intervention and public school special education left him functionally nonverbal, in diapers with the self-help skills of a baby, unable to pedal a child size trike. His balance and peripheral vision were off. He was over-the-top hyper, growing increasingly more aggressive and frustrated. He had the tantrums and the meltdowns. He could not sleep through the night. His motor control was lacking and his executive functioning was severely inhibited. We felt he needed Ritalin to tolerate school. His movement was disorganized and he could not even walk straight. He had never even called out for “mom.” He made repetitive sounds and had repetitive behaviors and no typical play patterns. He could not even point to his siblings in a photo when asked.

He would also constantly try to wander off at home, school or anywhere else. He could only scribble, had no academic skills and the neurologist said his developmental ceiling was 2 years. That is as far as he could go. The one and only sign he had learned was for the word “smile.” So when he was asked to smile for the camera he would frown, look at the ground and make the sign for smile when prompted even without a PEC card. They declared it a breakthrough.

Josh Vesely, happily smiling for the camera

Here we are 4 years later after abandoning the typical treatments and medications to try alternative therapies and dietary changes. My son still has Autism and that is not a declaration on its permanency. Why not? After 4 years, he no longer wanders off, can draw, can write his name and several words, is reading on a 1st grade level, rides a 2 wheeler, knows and plays with his siblings and makes friends, roller-skates, is 100% independently potty-trained, no longer wanders off with no sense of danger, and in some situations behaves every bit as well as a neurotypical 11-year-old boy. No more tantrums or meltdowns. He talks! No meds needed. Do I still have plenty of research to do and goals to be reached? Absolutely. But, those goals are no longer the painful ones that seem like they will never end.

I wish someone had said, “Guess what, Mrs. Vesely? Those diapers? Not forever.
His inability to pedal? Not forever.
Debilitating sensory sensitivity? Not forever.
Inability to handle public situations? Not forever.
Him being nonverbal at age 6? Not forever.
Those tantrums and meltdowns? Not forever.
The runny poo? Not forever.”

Instead, I often received strict judgments about my lack of parenting skill that changed nothing and made me feel hopeless. Good thing I found new friends!

Can someone say, “Autism diagnosis? Not forever!“? Because what I’m seeing tells me there are plenty more things that are not forever. So, I will tell myself!
His inability to hold a few loops in conversation? Not forever.
His peeing on the floor in random places? Not forever.
His inappropriate laughter? Not forever.
His attention getting? Not forever.
His anxiety to perform for other adults? Not forever.
His trouble with academics? Not forever.
His difficulty in following instructions for other adults? Not forever.
His difficulty in understanding rules and participating in group sports? Not forever.

Not so long ago, I discovered a historical artifact behind my dryer that was being replaced. It was an overnighter pull up that Josh no longer needs. Part of me wanted to put it in a display case to remind myself that much of what made life with my son so difficult was not to be forever.

Then, I decided the best way to acknowledge that was to let the pullup go!

Elizabeth Vesely has a degree in education and experience in the areas of occupational therapy, respite care and volunteer work with children and adults with special needs. She lives in the Midwest with her husband and five children. Her son Josh, who was formally diagnosed with autism at age 6, first experienced developmental delays and signs of autism at 2 months of age following his vaccinations. She and her husband have had success with alternative treatments and diet, including The Son-Rise Program, the GAPS diet, Mendability, Gemiini, and the Activator Method chiropractic technique. You can read more about Elizabeth and her family on her blog, Musings of an Autism Mom!