From the time I was little, I felt a connection to individuals with Down Syndrome. I would include these people in my prayers at night as a young girl and loved watching one of my favorite characters, Corky (Chris Burke) on the show Life Goes On. My connection to people with Down Syndrome has carried on throughout my life. My husband and I met working at a coffee shop. One of our coworkers, Patti, loved my husband, Andy, so very much and wasn’t too fond of me at first. You can imagine why. My son, as a kindergartner, found purpose in his classroom while assisting with a friend with Down Syndrome when needed. My hope is that my family’s path will continue to have people with Down Syndrome in it.
Development differences can make life harder to navigate and typically find parents overwhelmed and unsure as to what their future and their child’s holds. I have often wondered what it would be like to be a parent of a child with Down Syndrome, as they age- and you do too. How independent will they be and what will they do if their parent can no longer care for them. I was graciously granted, recently, the opportunity to ask a parent who has an older child with Down Syndrome some questions about her journey.
My husband’s childhood friend, Michelle, lives in Kentucky with her husband, son Luc who is 13 and son Griff who is 8. Griff was born with Down Syndrome and like most who love and advocate for these beautiful people, we feel he’s got something extra to share with the world.
Me: When you think about you and your husband getting older, and your son’s needs, what thoughts come to mind?
Michelle: We have a child with Down Syndrome and a typical child. Often when I think about their futures, I think about the same things for both. The best advice we got when Griff was born, was to take him home and raise him like we have our other son. So, just like with Luc, things I do now are to prep Griff for his future. I think about how he needs to be independent. I think about how important his self-care skills are. I think about how important his relationship building skills are and being able to interact with the world. I think about what kind of job he will have. I think about if he will want to go to college or not. I think about him finding someone to spend his life with. He’s very independent so I see him wanting to live with friends or a wife someday. In addition to those typical things I think about for him, I do think about how some of those things might have to be adapted for him. Like, if he lives on his own, maybe it’s next door to us. I think about when he has a job, will I be able to find someone that could be a mentor to him and look out for him? I don’t even know if those are things that I will need or not, but I do think about it. Basically, I think about the same things that I think about for Luc, but I extend those thoughts to how can I start now prepping him for these parts of his life. With Luc it will come a little easier, so I do spend more time working on these skills and getting Griff in the right environment to have the same experiences as Luc has.
Me: What do you think are some of the biggest needs of adults with Down Syndrome?
Michelle: I feel like one of the biggest needs is for employers to get on board with hiring people with special needs. People with Down Syndrome make amazing employees. Often, they are detail oriented, driven and have strong people skills.
Me: What resources are out there for parents to turn to as their adult child and they age?
Michelle: I would say to be in contact with your local chapter of the Down Syndrome Society. This is a great place to contact other people in your shoes. I follow a lot of families on social media or groups targeted to parents of children with Down Syndrome. A lot of these families have children my son’s age, but I also follow adults that have Down Syndrome. I maintain contact with his pediatrician and we see specialists when we needed.
Me: Is there any planning that should take place as parents of children with developmental differences age?
Michelle: I think it’s important to ask, what can we as parents do to prepare our children to live an amazing life filled with the same things that people without special needs have? It’s very possible to do that, you just might have to take a few different turns that you wouldn’t take if you are raising a typical child. I go with my gut when in doubt and I do a lot of, “I don’t know if he’s ready for this, but instead of ‘protecting’ him, I’m going to push him to do it and we’ll see what happens”. He will either rise to the challenge or show me that he needs a little more help with something before we can move on to that next step. Other than that mindset, the only thing we have done differently for him than Luc is we included some language in our will that should protect him if he ever were to need financial assistance in addition to any money we would leave him. Also, we put some language in there to designate a care giver beyond the age of eighteen in the event he’s not totally ready to be on his own and we aren’t here.
Including Care Managers On Your Team
I thanked Michelle for being willing to share with me her thoughts and feelings, and to give me a peek into her world. I really like the advice they got after having Griff, to take him home and raise him the way they were raising their other child. Michelle talked about Griff’s healthcare, future housing, schooling, a job, advocacy and educating others about his needs. She also gave some great advice in the last few sentences from our interview, that are underlined above, regarding legal and financial planning.
Care Managers get the honor of walking alongside those with various needs and their caregivers. All the items mentioned above, and more, are things we help our clients with every day, like, medical assessment and monitoring, planning and problem solving, education and advocacy, medication management and caregiver coaching. We join their team to ensure they are getting what they need now and, in the future, to enjoy their best quality of life. If you or someone you know is overwhelmed with current needs or like Michelle, and wanting to plan for their love one’s future, please contact a Care Manager today!