Our journey through autism; how we got from there to here.

By:  Danielle Hermann-Lavery
Danielle’s son is currently in Glade Run’s wrap program

Journey, by definition, is a passage from one place to another. Our passage has been a winding road of peaks and valleys. Our journey has been worth the distance covered. In retrospect I am awed by our ability to persevere. That is the thing about looking backward, you no longer see the difficulty of the trip- you see only the beauty of the landscape.

When Carter was born I looked down to see this perfect little person placed in my arms for me to love and to raise. I did not know it then, but Carter would end up teaching me more than I ever could have taught him. I believe that each soul in our lives has a greater purpose to help us to learn something that enriches our own journey. Carter has taught me patience, grace, tenacity, and that life holds infinite possibility.

Carter did not crawl until one year. He did not walk until 19 months. He only ate 5 foods. He bit, hit, and never looked at me. He may have been late to walk, but when he got it down, he ran. I don’t mean he ran around. I mean he ran hard and fast in the opposite direction of me every chance he got. When we went to any gathering he would sit alone and cry. When I ran the vacuum he would place his hands over his ears and scream. The thing he loved the most was the television. He could act out any scene in anything he had watched only once with great precision. Carter never stopped and I was exhausted.

My best friend Ang read an article in a magazine and she immediately knew what was wrong with Carter. Carter has Autism.

There is an entire rainbow of emotions that come with diagnosis. I felt relieved that we could get help, worried sick about Carter’s future, overwhelmed at the amount of work ahead, and finally sad that he would never be “typical.” That was 5 years ago and these emotions still are like tidal waves that sometimes drown my soul in stormy moments. However, the shock and awe of it all dissipated and then became little reflection pools of our life.

Not knowing where to begin was the scariest part of it all. As a communication major who no longer could work due to the monumental task of raising Carter, I did what I do best. I communicated, networked, and started to forge the path to sanity. That is when I struck gold.

After going through the process to initiate wraparound services I finally stumbled upon the number of my soon-to-be lifeline.  My lifeline was a Behavioral Specialist (BSC) who housed the guidance, support and answers that I had been trying desperately to find. 

Carter’s BSC showed up at my home with a lot of information in hand.  She began drawing a map of how to proceed with Carter. We sat for along time going over what needed to be done to ensure Carter’s long term success and by the conclusion of our meeting I was hopeful.

I was ready for wrap-around assistance.  I was ready to be part of the team which would also include our new Therapeutic Support Staff (TSS). It was a process until we did get a TSS who was a breath of fresh air that seemed to understand the varied nuances of Carter’s temperament and ability. She was a perfect fit for our family.  With the knowledge and guidance of Deb and Megan, Carter grew and changed.

This is what I did not know about services when we began… not only did Carter have to compromise, grow, and work, but we all had to.  His father and I had to erect a set of boundaries that was not typical of our relaxed, passive parenting style. Not only did we have to set boundaries, we had to stick to them like near drowning victims cling to a life preserver. This was not an easy feat. Not once when I pictured being a mother did it involve using a child leash at the mall to ensure the safety of my son.

As we grasped this new way of navigating our relationship with our son, we had growing pains.  It did get worse before it got better.  It became a battle of wills. The more battles I won, the more determined I became and the more Carter started to yield. It became less of a fight. I realized that following through with the techniques for behavior modification was the only way out.

Television became a reward. Timeouts were established to control the aggression; coping techniques were used to control outbursts.  Sometimes I just had to hold Carter for what seemed to be hours to calm him. Slowly new foods were introduced (with varying degrees of success). We made behavior charts and then we made deals. We integrated social stories and shaping of appropriate behavior.

It all came together slowly: it took time and patience which I often did not have either.  I started to see that Carter seemed happier and contented. Our days were full and busy. Not only did we have TSS services daily and BSC services weekly, we also traveled 45 minutes twice a week for speech and occupational therapy. Carter was beginning to adjust to routines and schedules. He would ask me what the schedule was and promptly remind me if I changed it.  He ran, bit, and hit less. Then he did not do these things at all. He began to look into my eyes when we talked and I could take him to family gatherings. He even let me run the vacuum and eventually ran it himself.  I continued to prompt and redirect Carter constantly letting him know what he needed to do.  He eventually was able to independently do most everything he needed to do during daily routines in our home.

Carter’s BSC had to pry my fingers from the apron strings that I had tangled and knotted through every fiber of my being and Carter’s. She helped me realize it was time to give Carter wings. We sent Carter to the Intermediate Unit IV preschool with TSS support. Carter did well at preschool, but something was still missing.

His father and I had always been against any kind of medication. However, it was obvious that Carter still could not focus enough to learn all he was capable of.  We finally agreed to take Carter to a psychiatrist to discuss medication options.  With medication there were trials and errors. Yet, we kept forging ahead until we came upon a medication that worked wonders and did not alter his personality.

Now we were ready to light the world on fire. Carter began maturing in leaps and bounds. It seemed that once he could focus on each hurdle, he would square his shoulders and leap with determination.

Time flew and Carter was finally ready for kindergarten.  We gauged all options and this is when we realized how far Carter had come. He began in a typical kindergarten with TSS by his side.  The school year went by and fall turned to winter and then to spring. He learned and adapted.  We learned and adapted.

Is seems like yesterday when I stood at the bus stop and watched my first grader board. We are ending our second year of school and Carter no longer has a TSS in the classroom, instead he has an aide for only half of a day. Next year he will not have an aide. He is in a regular 1st grade classroom most of the day and is in learning support to assist him in reading comprehension. He reads and spells words that I am sure I did not know at his age. His last report card tallied grades that are were all above 88%.  We are nearing the end of wraparound services.  Having met the goals of his treatment plan, in the fall Carter will “graduate”, (be discharged) from the wraparound services Glade Run Lutheran Services provided, but our journey won’t end. 

Some days I am still fearful about Carter’s future. We still have a long way to travel. We have bowel problems to deal with and social issues to conquer. We don’t know if Carter will grow up to be an astronaut or an actor. But we do know that this journey has been worth it and anything is possible.

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