Autism: The Journey of Both a Mother and a Therapist

By: Belinda Worley, MS-SLP-CCC

Since 1998, I have had the opportunity to work with children on the  autism spectrum. It has been a huge blessing to be able to serve children in many different settings including home intervention, private practice and school settings. As a therapist we are in need of a vast amount of skills in our toolbox to serve a variety of children with a variety of abilities. Each child and family come to us with unique needs, and it is a honor to be apart of that family journey.

I find that in my current private practice, I pull on past therapy sessions to help me when treating children now. While I continue to challenge myself to stay on top of the latest in therapy techniques, no amount of training could have prepared me for the journey that began in 2005.

On December 16, 2005 Emma Kate Worley was born. There is nothing like the moment when they lay your baby in your arms for the very first time. The amount of love when I locked eyes with this bundle of joy cannot even be put into words. My heart and soul truly exploded with adoration for this small baby. I remember thinking, “No matter what life brings I am here for you sweet girl”.

When bringing Emma home from the hospital, Daddy drove while I set in the backseat standing guard over my infant in the car seat. I had already ,at 2 days old, become Momma Bear ready for the fight. Quickly that sweet little bundle become the most colicky baby I had ever seen. No amount of comfort helped console her and hard days turned into hardmonths. By 6 months of age, she was showing signs of developmental delays and by her first birthday I knew something was very different.

Several other friends had children the same age as our Emma Kate. Our children were together often, and my girl did things very different than they did. The simplest of skills were so difficult as well as having extreme sensory issues and virtually no sleep routine. Her communication skills were severely delayed and not functional. She truly did not profit from play experiences. She was a huge toe-walker and paced throughout the day. She was most happy when swinging or playing alone. Routines and rituals controlled our world and our daily living. Raising children is not a job for the weak and mild, but my husband and I knew we were working so much harder than our friends.

At 2 and 1/2 our fears were confirmed that indeed Emma Kate was on the autism spectrum. On our way home from the hospital I called every therapist I knew to get her enrolled in as much therapy as possible. She had already started therapy by 15 months, but I wanted more. She needed more. Autism was not going to stop us. Autism was not going to define my child or her abilities and so our planned journey took a major detour. Autism is not something you plan for, but as parents we quickly learned to get on board for the new journey and bumpy ride.

Through our journey we have learned that we are way stronger than we knew humanly possible. I have had the absolute honor to join the Summit team to travel and train others on working with children across the spectrum. My presentation is based on the following objectives:

1. Recognize the primary characteristics and patterns of development in infants and toddlers who have or are at risk for developing autism spectrum disorders.
2. Identify the various treatments and resources available to children with autism spectrum disorders as presented by very young children.
3. Implement sensory integration strategies through problem solving to improve visual, auditory and motor development.
4. Utilize therapy ideas and strategies that help children with autism spectrum disorders through: communication & language, behavior, daily living, social skills and education.
5. Select practical inexpensive items that can be used in a therapy session to help engage the young child with autism.
6. Reinforce family support and daily living strategies that will carry over in the school, home and community.

There are no cures today for Autism Spectrum Disorders but early diagnosis and interventions are a child’s best hope for reaching his or her full potential. When we work together we can help our clients meet goals and improve in all areas of development. When serving children with Autism, we should focus on, but should not be limited to:

– Attention to important elements in the environment
– Imitation of actions and speech
– Understanding what is being said
– Communicating wants and needs appropriately
– Appropriate toy play
– Social interaction
– Transitioning

Unfortunately, there is no one formula of therapy or techniques that equal guaranteed success. What is available depends on your area. Each parent, therapist and school district must do their research and seek out opportunities to help the child with autism improve to their maximum potential.

Overall autism is a heck of a wild and bumpy ride. Mom and Dad you better hold on real tight. Remember that excellent communication between parents, therapists and teachers working together closely is the key to continued progress. When raising children on the spectrum we must remember these strategies.

– Pick your battles: only insist on what you can back up!
– Keep your requests or questions simple.
– Always give concrete instructions.
– Offer choices that at acceptable to you.
– What’s in it for the child?
– Make sure ALL family, therapists, friends and support system are all on the same page when working with a child with Autism.
– Ask for help from your support network.

KEY POINTS….When interacting with children with Autism…
1. Stay Calm
2. Use Simple Language
3. Speak Slowly and Clearly
4. Explain What You Are Doing
5. Do NOT Physically Stop Self-Stimulating Behavior
6. Rephrase as Necessary
7. Give Visual Cues as Needed and DO NOT Demand Eye Contact
8. Be Specific and Avoid Figurative Language
9. Remember Each Person is Unique and May Act or React Differently, so ALWAYS Provide Love and Support.

So to all of those in the trenches with me, the month of April is for you. Happy Autism Awareness is for you…to all who have ever heard the words your child has autism, to those with the child who would not sleep, who would not eat, who would not talk, who watched other children achieve the simplest of milestones, to those who searched for the latest and greatest in therapy techniques, to those who watched their child struggle with huge sensory issues, to those who worried about the financial side of raising a child with autism, to those trapped in the craziest of obsessions, to the parents who had to work so hard on their own marriage because the special needs journey is no joke, to the Mom who pushed her child on a swing for hours at a time, to the one trapped in a world of constant anxiety and fear of change and the unknown…this month is for YOU.

The hard work pays off in a very BIG way. The child diagnosed at 2 is not the end of your journey. Your daily prayers will be answered even bigger than you can imagine. One day you will look in the eyes of your child and admit that wow she is going to be ok. She will indeed be just fine. She was made for an exact purpose. Hold on tight because it will be a roller coaster of emotions, but one day you will look back and the truth is you would have not changed a thing. You are braver, stronger, and blessed beyond measure because of a child with Autism. Happy Autism Awareness Month Momma Bears!