(May 1, 2018) Catherine Read speaks with Rachna Sizemore Heizer about her son, Jake Sizemore, who is a local musician with special needs. Rachna speaks with Catherine about her journey as a parent navigating the system with a child with an autism diagnosis, and how she learned to focus on Jake’s abilities, instead of his disabilities, in order to discover his gifts.
In 2004 at the age of 2, Rachna faced a doctor at Children’s Hospital who turned her world upside down. Her son Jake was diagnosed with low-functioning autism, and she was told to have “very low expectations” about what he could accomplish. Jake was non-verbal, and struggled with many things that the average child his age could master. The doctors provided her with limited resources, many of which were not at all helpful. Rachna felt lost and confused, as she attempted to navigate a system that was not designed for children like Jake. She acknowledges that things have changed quite a bit since then, as more resources have been developed to help families cope with this diagnosis and its challenges. She does know that parents are the best advocates for their children, and it is imperative that parents stay engaged in order to understand how their child can best thrive and succeed.
As Jake grew up, he started school in the Fairfax County Public School System. Starting in second grade, all of his classes except PE, art and music were not integrated with the general school population. When the PE teacher came to Rachna to explain that they wanted to move Jake out of the general PE class, she raised the red flag and asked “why?”. The answer she received was that the class aid didn’t have enough time to spend with each special education student individually. Rachna then asked a very important question – “So, if Jake’s aid is busy, what is he actually doing during this time?” The PE teacher was very forthcoming, and shared that Jake would find another student, and observe them and then mimic the activity. Rachna pointed out that this was an extraordinarily valuable life skill in and of itself – learning to navigate a strange situation and follow along to keep up with his peers, something that does not happen in his other classes that are segregated. Rachna pointed out to the PE teacher that these soft skills help develop a child’s emotional intelligence and give them experiences that they need to succeed in life.
For many years, Rachna struggled to find an activity or subject where Jake could connect and be happy. His older sister was a dancer, and after attending a recital, Jake shared that he wanted to be on stage. Rachna scoured the area to find a studio that would accept a child with special needs, and didn’t give up until she found someone who would work with him. Jake gave it his best shot, and they both learned that what he really loved was not dance, but performing on stage. Jake had always had a knack for picking up tunes and playing songs by ear on his toy keyboard as a child. As Rachna paid closer attention, she found that he has a great gift of being able to play music, and he translated his love of the stage into performing live music. He made his way to Vienna School of Rock, and has been dazzling audiences for quite some time.
With the benefit of hindsight, Rachna wants to point out to parents that she spent so much time trying to work on building Jake’s skills in areas where he struggled, that she was not always able to see where he shined. Once she was able to find that, Jake began to thrive and Rachna experienced joy in seeing Jake do what he loves. The ultimate experience happened when Jake was invited to Broadway to audition for the show School of Rock at the Winter Garden Theater in New York City. Rachna was so nervous for Jake, and when they arrived the stage managers took the musicians down to the audition stage unaccompanied. Rachna shared that Jake had autism, and might be uncomfortable all alone, and not sure what to do. The stage managers would not make an exception, and marched Jake down with the rest of the children. Thanks to Jake’s ability to observe and learn from those around him, he watched what was happening and figured out how to navigate the situation, a skill he picked up from that PE class so many years before. In fact, he performed so well that he was selected to appear on Good Morning America the next day.
Thankfully, doctors and schools have made great strides since Jake received his diagnosis in 2004, but there is still much work to do. Rachna sits on the board of the Fairfax County Special Education PTA, as well as having a seat on the Fairfax County School Board’s Advisory Committee for Students with Disabilities. Her goal is to advocate for strong policies so support children with special needs in the FCPS school system. In this way, Rachna hopes to open doors and work with educators to help students with disabilities be able to realize their dreams. Additionally, Rachna is a Board Member of the Arc of Northern Virginia, where she focuses on creating more opportunities for people with disabilities to work and live independently. Jake continues to make music and bring joy to his audiences.