Updated: Oct 10
My name is Carolyn and I started out my career in education and have worked with people with disabilities for 40 years. I had been teaching for about 10+ years when I moved to a small area of Florida where I met and married my husband (Gene) at the ripe old of age of 37 years. After 6 months into my marriage, my principal asked me if I knew anyone who would be interested in adopting a child from our school.
Daniel overcomes communication challenges to reach for the stars. Technology, determination, and parental support has been the key. Dutch's story and many others provide inspiration and sage advice with The Essential Guide for Families with Down Syndrome.
Well, God works in mysterious ways. Daniel came to us one month shy of 5 years old. His 5th birthday was my first experience with trying to make social connections for him. So, I planned a party, the first of many. That first party helped connect those children to Daniel and that connection remained for many years. A birthday party tradition began. Twenty-four years later, we are still hosting a party for many, many friends that we have made along the way.
Daniel’s intelligible speech was difficult at best and often non-existent. Daniel signed when he was young and will fall back on that if he is not being understood. During his school years (and even to this day) Daniel received speech and language services to help with his communication skills. He used a variety of methods including picture symbols, voice output devices, and most recently an iPad with a communication program (ProLoQuo2Go).
Making friends with peers was a bit more challenging as his classmates possessed such a wide range of abilities and had some of the same communication issues. Fortunately, during the school years there were lots of activities provided to build friendship. If a small group of children with the majority being “typical” were just “playing” they often left Daniel out as he could not keep up. Being left out was not on purpose or unkind. It was that he was usually just not as advanced in his play or communication skills.
As Daniel got a little older, we began involving him in outside school activities. Cub Scouts required me to assist and most often the boys and the dads were pretty helpful and nice. Occasionally one Scout would befriend Daniel. Daniel loved all things Scouts, including hammering, building fires, sleeping in tents, and eating hot dogs and S’mores. What more could a boy ask for?
At the age of 14, Daniel went to his first sleepover camp. It was way scarier for me than for Daniel. He LOVED it and has been returning every summer and during many weekend camps as well. His social skills and his independence improved.
To help him prepare to transition from high school, at the age of 19 we started a Buddy Club. We got together weekly with a small group of individuals with similar interests and ages. Each week a parent would take on the responsibility of planning a group activity, such as game night, scrapbooking, or dinner and a movie.
After Daniel exited school, we soon enrolled him in a local ARC Adult Day Program and later a faith-based half-day program where there were lots of activities and choices. Daniel attends with 10 other individuals who have all become very close friends. They see each other as friends with something to offer and encourage each other every day.
One of the best things we have done is to get Daniel hearing aids and speech lessons. When Daniel is at his day program, he has a job to do each day that requires him to speak and ask questions of his peers using his voice and/or device. This has been very helpful in getting him to slow down and speak clearly.
Daniel’s verbal communication has improved but he is still difficult to understand to those who don’t know him. He uses a combination of verbal communication, signs, and prompts with his iPad.
Daniel has discovered the value of his iPad in various situations. He can order a cheeseburger and everything he wants on it with no help – it is very motivating. If the person sees it as their voice and sees its power, they will use it independently.
If I was going to give advice to a family I would suggest starting early, trying everything, and working hard to develop and maintain friendships. If you look around and don’t find what is best for your loved one, make it happen. Most likely there are other parents/families looking for something just like you!
Fast forward 24 years and my son Daniel has now turned 29. It has been a wonderful ride with a lot of curves and ups and downs. He has enriched our lives and made me a better teacher and way better person.
Carolyn, Daniel’s mom
I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
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