I’m Tiara, and my son’s name is Max. He has a rare genetic disorder called Chromosome 13, Partial Monosomy 13q, which is the partial deletion of the 13th chromosome that causes a combination of cognitive, sensory, and physical challenges. Our doctors initially told me not to expect Max to live. While dealing with that shocking and devastating news, I relied on God and the resources He provided to help me find our path.
I started advocating for Max in a hospital 17 years ago and will never stop. Max is 17 now. He is deafblind with some cognitive delays. We’ve had a long journey as he’s endured cornea transplants and a cochlear implant on one ear (we have plans for him to get one on the other ear soon). To make sure Max had the best education opportunities available to him, we moved from Ohio to Massachusetts so that he could attend Perkins School for the Blind (the school Hellen Keller attended).
Like Any Other Kid
Max is an amazing boy who can do all things through Christ, and I’m so proud to be his mother. I try to make sure I’m always treating Max the same way I would if he wasn’t deaf and blind, so I let him experience all types of things that other people might think, “How is he doing that?” I can always find a toy that soothes and teaches Max something simultaneously, and I’m big on DIY methods and making toys to stimulate his interest and help him learn.
I take him to “kid” parties (well, teen parties now). I take him on trips to amusement parks and teen concerts, and I let him go to youth ministries with the other kids in church on Sundays. When all the boys his age were playing little league football, I advocated for Max to be the mascot. He goes skating, swimming, etc. My biggest goal for Max was to make sure he was included. Since we have figured out how to keep him involved, my current goal is to expand his communication to a mode that people other than me can understand.
Now that Max is nearing transition age, and we’ve moved to Massachusetts so he can attend Perkins School, we have entered a new chapter. I can see so much growth in him since we have been in Massachusetts and at Perkins. I’m thankful Max finally got to be somewhere so many teachers, staff, and other students understand him.
Advocating for Max
I started advocating for Max 17 years ago, which became my job in 2015 when I created the MaxWay1 advocacy group. I was young when I had Max and didn’t really know what I was doing in the advocacy world, but I now know I was advocating and not even realizing it.
As Max grew and needed more support than our neighborhood school could provide, I advocated for Max to attend the Ohio State School for the Blind. Now I’ve gotten him into Perkins School for the Blind, one of five deafblind programs in the United States.
I advocated getting Max a cochlear implant when they told me he wasn’t a candidate because his auditory nerve was too small. Max got the implant, and it worked (I’m now advocating for him to get a second implant to have bilateral hearing). When I learned that a child’s special education category meant everything regarding IEP services available to them, I advocated changing Max’s category from “multiple disabilities” to “deafblind” because he meets the criteria for the deafblind category, and I want people to understand that he needs resources and support beyond those in a typical special education resource room.
There is a village of people who are in this battle beside me. I’ve always had a good support system with my parents, Max’s dad, his sisters, and my extended family and friends. I also have access to online networks and appreciate how sites like APH ConnectCenter for Families help families and advocates like me know that we are not alone.
APH ConnectCenter for Families has always been a resource throughout my advocacy journey. I’m grateful to be asked to share our story and hope it helps other families find support on their journeys.