We welcomed our first baby in the spring of 2005. He made his appearance just over 4 weeks early weighing in at 6 lbs. 2 oz. Our baby boy seemed healthy enough, and they sent us home to learn the ropes as an equally excited and terrified new family of 3! Within the first week our little guy struggled to eat and gain weight. He dropped down to 5 lbs. as we did our best to learn how to feed and care for a tiny infant for the first time in our lives.

Eventually life settled down and he grew slowly, but surely. By 12 months, he was an adorable and smiley 18 lb. baby. He was such a good baby – quiet, rarely cried. He sat calmly on my lap and smiled at the world. We wondered if something could be wrong because he did not really make sounds, track things with his eyes, or move a lot. His milestones seemed a little late but nothing really obvious.  Our pediatrician did mention 2 concerns, first he should be making more sounds and suggested an assessment with our local early intervention program, and second, he was gaining weight very slowly (officially considered “failing to thrive”). We did a battery of medical tests, which came back normal and met with a dietitian. It took 2 assessments one year apart before he qualified and was accepted into an early intervention program for delayed speech.

Around age 2, after finally starting an early intervention program, the specialist (who was a retired speech language pathologist enjoying a part-time second career) came to us and said that she suspected our toddler had childhood apraxia of speech. She referred us to the nearest children’s hospital, Doernbecher’s in Oregon, for further assessment where the diagnosis was confirmed. By this time, our tot was 2.5 years old. The SLP at Doernbecher’s told us that ideally our boy should receive speech therapy multiple times weekly. At that time there were no speech services in our community or even within 100 miles of our community. Our public school system contracted with an SLP that came to the district only 3 times a year.

Even though we did the home exercises recommended to us, we felt it necessary to move our family to a larger town that could provide the services our boy needed to succeed. We were able to enroll him in speech therapy with a SLP who specialized in CAS. We also enrolled him in special needs preschool.

With the help of early intervention, our boy gained weight and grew. Turns out, his growth and feeding issues were related to his oral motor planning difficulties. He eventually started first grade at a healthy weight and speaking pretty well, except for an occasional stutter when he got particularly excited.

While speaking and eating was improving, our son was also experiencing some gross and fine motor planning delays and low muscle tone. In school he heard an announcement for after school wrestling club. He later told us he thought it would be just like playing with his brother, so he asked to join. This sport was way outside our comfort zone. Neither my husband or I ever participated in a contact sport! The wrestling coach ran practice in a very repetitious way. Children lined up on one side of the gym, a move such as a somersault was demonstrated, and they were to do the move over & over as they made their way across the gym. These were called “drills”. This repetitious method was a game changer. His gross motor skills slowly improved as he made the brain connections to control his body & understand his place in space.

Another pivotal experience was when he learned cursive in 3rd grade. Prior to that his fine motor delay made holding a pencil and creating letters, words, sentences very difficult. The fluid motion of cursive helped his brain make the appropriate connections which allowed him to become successful in school.  At home we encouraged Lego play as well as guitar lessons to improve fine motor skills. None of these things came easily, but our boy was determined.

Fast forward to the present. Our once tiny baby boy is not so small anymore – he’s taller than his dad! He competed in wrestling every season since 1st grade. We shed many tears watching him give his all on the mat only to be out-muscled & out skilled. This year he won 3rd in State in his weight class. Few people realize how much harder he had to work to develop the motor planning skills, muscle tone, and strength for that success.

This month he gave a speech at a National Honor Society school assembly. He stood in front of the large crowd and confidently read what he had prepared. Last week he graduated [high school]. When he walked across the podium, he did so wearing the National Honors Society stole and with credits from 3 AP classes (including AP Language) and one dual credit college course.

My advice to families facing a new CAS diagnosis: access early intervention, read to your kids every day, learn about neurodivergence and all the ways your child with CAS (as well as their siblings) may be experiencing the world differently.  Assume CAS is not the only neurodivergence at play. Sixteen years ago when we learned of our child’s diagnosis we mistakingly believed he could be treated & cured. It’s better to approach any diagnosis of this type with the knowledge that neurodivergence cannot be cured, however, individuals can learn skills, develop pathways, and succeed. Our children are not broken, they don’t need to be fixed! They do need patience and support.

Our young man occasionally gets excited and must slow down his speech or repeat himself. His handwriting is a lost cause! He has to work extra hard to follow through and maintain attention to tasks. Nevertheless, he’s headed to college this fall at Utah State University where he received a merit scholarship to pursue a degree in Wildlife Ecology & Natural Resource Management.

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