History 

We became aware that Collin’s development was not typical when he was 18 months old. Eating was actually his most challenging skill. He would choke or gag when we tried to feed him a bottle, so he was breastfed exclusively. Because of his excessive gagging, we couldn’t introduce solid foods to him until nearly age two but were finally able to do so with the help of our occupational therapist, who worked with him through early intervention (Birth to 3 program).

Collin was in and out of the Wisconsin “Birth to 3” program from the time he was 3 months old. He walked and talked at appropriate ages, but he didn’t get easier to understand as he got older. Collin received an autism diagnosis at age 2.5 and, from ages 3 to 9, received ABA therapy. He has received speech therapy, occupational therapy (OT), and physical therapy (PT) since he was four.

When Collin was two years old, we sought seizure treatments at the Children’s Hospital of Wisconsin. At age 6, we asked for genetic testing because his seizure activity and symptoms kept evolving yet not improving, as most of our medical professionals predicted.

In addition to Collin’s autism diagnosis, he has global developmental delays, seizures, issues with speech, motor skills and a behavioral diagnosis of ADHD. He suffers from poor coordination due to ataxia. His family struggles with the fact that there are so many unknowns ahead for Collin. He relies on several daily medications to function appropriately, including anti-epileptic, anti-psychotic, ADHD stimulants, and ADHD non-stimulant medications.

Diagnoses

• CACNA1A-related epilepsy

• Global Developmental Delays

• Autism Spectrum Disorder

• Ataxia

• ADHD

Despite his autism diagnosis, Collin is quite the social butterfly! Possibly even TOO social and welcoming of ANYBODY - a stranger or a known associate. He is incredibly kind, thoughtful, and smart! Everyone who has the pleasure of knowing Collin adores him (once they get past his overwhelming energy and demanding presence.)

Collin struggles with common sense and caution for safety. He is oblivious to sarcasm and understanding danger. Collin can also be VERY impulsive and aggressive and gets overwhelmed easily. He struggles with coordination and knowing where his body is in space. He often runs into things, drops things easily, or knocks things over, as he is unaware of how close he is to things. He craves deep pressure, so he does a lot of jumping, flapping, and smacking. He also exhibits repetitive movements and often hits the ground when overwhelmed.

Therapies 

Collin receives speech, OT, and PT at school and has an individualized education plan (IEP.)

For Those Newly Diagnosed 

We are a newly diagnosed family and are still learning. But, Read, read, READ!! Don’t let the diagnosis overwhelm you with fear; let it fuel you to keep pushing not only for your child but also for the sake of every warrior walking this journey. It may be a complicated diagnosis, but we are blessed to be afforded an answer and a direction to move forward for a brighter future for our families!