Updated: Apr 29, 2022
Person-Centered Planning and an Independence Guidebook help lead the way
Discard the Naysayers
From the moment we discover we had a baby with Down syndrome and our life plans changed, we needed the support of others.
There are those that mean well but aren't really being helpful, and those that truly are contributing to the path ahead.
I appreciate those that say we are only dealt with what we can handle, or that we've been chosen by our son/daughter because we have unique strengths. Others may embrace that message, but we never found that too comforting or empowering when we first got the news.
When our children enter public school, there are plenty of teachers, parents, and administrators that want to limit our child's capabilities when they may actually just be trying to ease their own burden by pushing us away from inclusion and into restrictive learning environments. We chose for our daughter, Gwendolyn, to be in the special needs curriculum. We had our reasons, but perhaps we bowed a bit to the pressure of the naysayers.
Later, as Gwendolyn completed high school and we began to consider her more independent stages of life, we were met with choruses of doubt from others. "Won't she need constant care? Aren't you concerned about her safety and security? How will she make the right decision for herself?" The answer is yes, we are concerned about these items like every parent, but we are also confident that like our other kids, Gwendolyn will learn, make mistakes, and grow to be a confident, proud, happy person.
This is when we were introduced to Person-Centered Planning (PCP). This is a simple yet revolutionary philosophy that places the individual with Down syndrome at the heart of all decision-making. It is quite tempting to convince ourselves we, the parents/guardians, know all the answers to our son or daughter's well-being. Honestly, we might, but this is our child's future. Don't they deserve to have a seat at the table? From their toddler days, we encourage them to make choices about food, clothing...this, or that. Shouldn't we continue that as they get older? Many of us would be surprised at what is going on in their mind, and what their hopes and dreams truly are. Ask them. Be sure they are at the school ARDs and involved in the decision-making. Encourage them to dream about their future, ask about their vision, including their thoughts, and vote on options you develop. Not only will this approach help them buy into choices made, but it will result in better choices. Often we treat our kids with kid gloves (hence the phrase) but they just want to be treated like anyone else.
What if the Naysayer is Us?
Finally, during the consideration for this independent stage, we've also heard voices suggesting Gwendolyn should stay home. We need her help at home. She doesn't need independence out of the home. Those voices are not typically from others, but from ourselves, the parents. It is time to remember to put our son/daughter first. What will be best for them? How will they grow if their environment, activities, and world around them remain the same?
It is also time to put ourselves first. Many parents are ashamed to say it, but parents deserve retirement too. We needn't be full-time caregivers throughout our child's life. We don't want that and our daughters and sons don't need that. We must let go and recognize, regardless of the age of our son/daughter today, that independence outside the home is quite likely a win-win solution for the whole family.
Embrace the possibilities. Encourage your daughter or son to join you and dream big. Gwendolyn has always been chasing her independence. Others may need a nudge. Perhaps we the parents/guardians also need that nudge, but independence is often the path to freedom for the individual with Down syndrome and for the family as a whole.
Nearly everyone who has completed our family survey below notes the biggest concern on this path to independence is the lack of guidance. How do we know how to support their independence? How do we search for the right place?
It is a struggle. There must be dozens if not hundreds of books for new parents of babies with Down syndrome. Plus dozens more about how to navigate public school systems. But if you are looking for a book to guide families on the path toward independence for your teenager or adult with Down syndrome, the bookshelves appear bare.
That is what The UPLifting Guidebook Project is all about. My daughter is providing the motivation and queues, my family and I are doing the research, and I am writing the book to provide guidance toward independence for adults with Down syndrome and their parents/guardians.
Please join us by subscribing today. We continue to research throughout 2021 toward publishing the Guidebook in 2022. In the meantime, I will continue to share our learnings and challenges as Gwendolyn herself prepares to move out of our family house into her own independent lifestyle.
Your participation in our survey will help ensure your concerns are addressed in the Guidebook next year.
Thanks so much,
Steve & Gwendolyn
The UPLifting Guidebook Project is gathering information from parents, doctors, living facilities, and individuals with Down syndrome so we can help in your journey.
Please take our quick and confidential survey. Your answers will help us better understand your dreams of independence and the obstacles that may stand in the way so that we can seek to address the myriad of issues in our upcoming Guidebook for Independence. Click on our logo below to take the quick survey.
Look for updates on The UPLifting Guidebook Project on our website.