This is the first of three blogs today from New Jersey mom SarahG. Her second and third entries, to post this afternoon, will focus on homeschooling and diagnosing Tourette Syndrome.
I am the mother of two boys who are known as “O” and “B.” “O” is 15 years old and has TS with ADHD and OCD. For years, our biggest challenge was O’s ADHD, which is severe. In the past few years, the tics have increased in severity to the point where people who see the tics think O is having a seizure. B is 12; his issues tend to be sub-clinical, but they are there. B also has the challenge of being O’s younger brother.
As far as we know, O’s tics first manifested when he was 3 years old. I say “as far as we know” because that is when we first recall noticing tics. O was an extremely challenging child from birth. It took us six years, many doctors and much heartache to obtain the TS diagnosis. We continued to travel from doctor to doctor in the ensuing years as we tried to find medications and/or therapies that might help.
Our experiences with medical professionals generally have been negative. O’s case is particularly challenging and unique, and it has been difficult to find people who are capable and willing to work with and listen to us.
Where we find ourselves today: O has been off all medications for nearly four years. His ticcing is severe at times, but the choice to remain medication-free is his. O and B have been homeschooled for the last 10 years – a decision prompted by a disastrous preschool experience and our realization that O’s needs were too unusual for a school to accommodate.
O has accepted his TS as part of who he is. He endures the pain of his tics, he advocates for himself, tries to educate others, and does not let his TS stop him from reaching his goals.
As for the rest of us, well, we have tried to accept the TS as part of our family, too. Life has evened out somewhat with time and maturity. I have tried to let go of much of my anger toward people who have mistreated O and the family because of O’s TS. I have grown a thick skin. I try to worry less. A bit of mourning for the “normal” family life I thought we would have remains with me always.
What you can expect from my future posts: thoughts on homeschooling; how we came to the decision to stop using meds to manage O’s issues; thoughts about the future, as college is on the horizon; how TS affects the way people react to and interact with us; our adventures and misadventures with members of the medical community; caregiver stress; stress in general; a bit of that residual anger.