I can never die. Literally. Not even of natural causes or old age. I’m convinced I must live forever, and not because I have some fascination with vampires. I mean, technically I would be happy to pass on at some point, but it would have to be the right moment.
I’m sure most moms, especially moms of young children, have this thought. We must keep it together until our children are grown and can get along without us. But this thought of forced immortality seems to grow exponentially when you have a child with an intellectual disability. Will these thoughts ever go away as my son, Troy, who has Down syndrome gets older?
Of course, the goal of motherhood is to work yourself out of a job.
This is no different when you’re a mother to a child with Down syndrome. Still, there are many more hoops to jump through to reach that goal, and even if you do your best your adult child will likely still need a lot of support.
Parents are the expert of their child. No one will advocate for our child like we will.
No one knows Troy like I do. The intricacies of a life with my son are endless. Only I know when all his therapy and medical appointments are, and exactly what is said and done in each one since birth. Only I understand every phrase he tries to speak and the made up signs he uses to get his point across. Only I know all the latest and greatest when it comes to Down syndrome advocacy and education, and how Troy would benefit.
You might ask, where’s the father? My husband actually is a Troy expert in his own right. As a medical doctor, he knows all of Troy’s medical history better than I do. He attends especially important medical appointments and all surgeries, to advocate for the best care. He helps me decipher the doc talk, and particularly confusing treatments or diagnoses. When it comes to Troy’s medical care, I would be lost without him.
Thankfully, Troy is a really healthy fellow. His biggest challenges will be social and educational, which are firmly planted in my domain of power. As a former educator, and current COPAA Special Education Advocate it will be me who steers Troy to future independence. It’s a lot of pressure!
I’ve even wrote a posthumous letter to Troy’s future IEP team, because I will never cease to be one of the most important members of his IEP Team. Not even over my dead body, thank you very much. You may think I’m crazy, but no one is going to fight for full inclusion with proper supports like I will. No one believes that Troy should be included with his typical twin throughout his educational career like I will. No one is going to pre-teach, post-teach, and snoop around at school to make sure his educational goals are met like I will.
Check out my Posthumous Letter to Troy’s IEP Team Here.
Of course, I realize life is too short and unfortunately no one gets to decide how long they stick around. So, the only thing that quells my anxiety surrounding this topic is planning and teaching others to advocate for Troy. We have a special needs trust, a will, a regularly updated “letter about Troy” attached to that will, an ABLE account, and pretty soon we’ll sign my husband’s posthumous military retirement income over to Troy in a trust.
Beyond the financial planning, I do a lot of soft planning. Like the posthumous IEP letter, I also talk to my husband, and all our immediate relatives about what Troy is doing now and what short and long term goals we’re working on. Lastly, I talk to Troy’s typical twin often about including Troy. Although he’s only 5-years-old, I know he and their 2-year-old sister will likely be Troy’s advocate longer than any other person. I believe it’s imperative that I plant the seeds of kindness, inclusion, and advocacy now, so that Troy’s siblings can naturally and willingly step into my shoes when I’m gone.
Please tell me that I’m not alone in these thoughts. Although dark, I feel like these feelings are important to write down and plan for. Tell me what you think below.