I am a new mom of a son with Down syndrome. Our pediatrician’s office gave me some information about resources available to our family and I have become involved with our local Down Syndrome Association chapter. I met some other parents who have shared some suggestions, but I want to make sure I do everything possible to allow my son to thrive. What should I be considering as he grows up?
First, take stock of what you already have: competent medical care, the Down Syndrome Association, and perhaps most importantly, the beginnings of a lifelong engagement with people in similar circumstances. You may be tempted to want to know everything now and figure everything out immediately, but that is not how this works. Like all aspects of life, answers will reveal themselves organically over time. What that also means is that you should be ever ready to see and hear those answers when they show up.
In order to be ready, you should continue to engage with the various associations and parent groups. Be curious and ask questions, but be ready to accept the fact that there are many questions that will remain unanswered. Make contact with your county board of developmental disabilities and explore the resources available to you now and understand what will be available in the future. Meet with a special education advocate to become familiar with your son’s rights to a free, appropriate public education. Meet with a special needs attorney to discuss what benefits your son is entitled to now, and what he will be entitled to in the future, as well as how your own estate plan should be tailored to provide for your son’s special needs.
Be curious, inquisitive, and even skeptical, but be patient. By surrounding yourself with social and professional support, you will be ready to recognize the answers to all of your questions as they reveal themselves over time.