When your child with a disability becomes a (almost) teenager
This morning I’m celebrating! My son, my oldest, Chance, he’s turning 12! I cannot believe it! First off, how in the world am I old enough to have a pre-teen! Second, this brings an annual bunch of mixed feelings due to his Angelman Syndrome.
What is Angelman Syndrome?
Chance was born with Angelman Syndrome, a genetic disorder caused by a deletion on his 15th chromosome. It has caused major developmental delay including not being able to walk with out assistance and being completely non verbal. He also has a sleep disorder and epilepsy due to his Angelman. His Journey started out with excitement (you can read my guest post of his birth story here). Ever since the start of his life adventure he hasn’t stopped defying expectations and paving his own path.
My awesome son has always loved having a good time. That seems to be his highest priority. He loves Techno music, beatboxing on the ipad, and playing in the pool all day if he could. Sometimes I honestly forget my kid is disabled. Even though I spend my days working on alternative communication, helping him with all his self-care, advocating with the school and keeping track of his medical needs. It’s become our normal, and I’m ‘mostly’ no longer phased by it.
Our Complicated life
Even something as simple as going to the playground can be complicated. We have to check to make sure there is no gravel or wood chips so the wheelchair can navigate, or he can walk safely with help, can’t be too hot that day or it will trigger seizures, and it can’t be too busy or he will get anxious and manic. In this regard we are so lucky to have Morgan’s Wonderland , which is an inclusive playground/theme park for all abilities here in San Antonio! It’s actually his favorite place to go, so that is where we will be partying for his birthday!
But of course as he gets older, there is a very small part of me that feels sad he’s not able to do typical 12yr old boy stuff. He cannot go hang out with his friends with out a caregiver, or play sports, or read books, and play video games. I’m thankful its a small list, but aware that list will grow as the years go on. He will not get married, or have kids, he may or may not get a job, there is a lot of potential still despite his challenges.
As we look to the future, I will never stop fighting for him and pushing him to reach his full potential. I see only fantastic things ahead for him with a life full of the adventures he loves! I cannot wait to see how he grows and effects the world around him.
His lessons for the world
If he’s taught me and the world anything, it’s that nothing has to go as planned, we create our own joy and our own path in life. We never have to follow what others ‘think’ we should do. Chance never gives up, even if his body seems to fight against him, he stays determined and finds a way to do what he wants. He’s taught me to spread happiness, love and hugs everywhere we go and everyone is better off when we are smiling through life.
Happy Birthday Chance, thank you for sharing you joy with me and the world!