Early Questions Spark Initiative and Possibilities
Noah was born in June 2018, and we had no idea that he was going to have Down syndrome. He spent fifteen days in the NICU and on day ten we were told he had Down syndrome based on his chromosomal karyotype. The genetics counselor gave us a sad look and said “I am so sorry, but your son has Trisomy 21 and will need therapy. He will probably not walk until he is 4 and most likely be nonverbal.”
This statement caused his dad and me a lot of grief and anger. You see, Noah’s dad and I are both very stubborn and took her words as a challenge. We never back down from a challenge. We did not want pity or any other negative emotion that people gave us based on his diagnosis because he was more than his diagnosis. While his dad processed this information at a rapid pace, it took me a little longer and I grieved for the “perfect” baby I thought I was having. Little did I know that he was the “perfect” baby, perfect for us!
Stephanie shares their story of determination, early planning, and life lessons that have supported the growth of their son, Noah. Their story and many others provide inspiration and sage advice in The Essential Guide for Families with Down Syndrome.
I got to work researching Down syndrome. I contacted a friend that had an older child with Down syndrome, and I asked her what I needed to do to make my son as independent as possible. Her first piece of advice was to love him and then to get into contact with an early intervention program as soon as possible.
Noah was released from NICU on July 5, 2018. The following Monday I was on the phone with Birth to Three scheduling an appointment for an evaluation. We began Occupational and Developmental therapy when Noah was 26 days. From then on, my days were spent scouring the internet and making connections via Facebook. His dad and I made a pact to do anything and everything possible to ensure that our child had every advantage he could get to lead a productive and INDEPENDENT life!
Noah is now four and he has been walking since he was roughly sixteen months old. He started saying words around age two. We are constantly looking for therapy-based toys that will strengthen his grasp and fine motor skills. We go to a Down syndrome clinic annually, meeting with a Behavioral Pediatrician and a myriad of therapists to ensure that we are doing all that we need to do so that Noah has every opportunity to be independent and self-sufficient.
Planning for the Future
I am a planner so I thought about as many possibilities as I could. I asked myself the following questions:
1. Who will provide care for Noah and not abuse or take advantage of him?
2. Where will he live if his dad and I are gone?
3. How will he get to his appointments, grocery store, or work?
4. What do we need to do to prepare for all the above?
For the first question, we intend to secure guardianship at age 18 with several alternatives to keep him out of state care. I need to make sure that my child will be taken care of if something happens to us. He has siblings but I don’t think his siblings should have to take care of him. I have in place someone to be his guardian if his dad and I are no longer present to care for him. We have life insurance policies that will provide a means of caring for him in the event of our demise. I have discussed all of this with my oldest son (21) and he is in agreement with the way my life insurance will be divided between him and his brother.
As far as the other three questions, that will be based on his level of independence. He will inherit the house we own if that is feasible or else look at assisted living communities that meet his needs and our expectations. The ‘how’ will come over time as he develops, making choices and decisions more obvious. The end goal is independence with as little interference as possible.
The advice that I have received that has held true is that our kids do all the things that neurotypical kids do but in their own time. While this is hard to take sometimes, it is true. Things that we see as their struggle, they don’t see as a struggle because that is just the way it is for them. It is their normal. Everything that our other kids have done, Noah is doing or starting to do. To raise a truly independent child with Down syndrome is to give them every opportunity that other children get. Teach them to read, teach them to write, to walk, run, dress and undress, bathe, and groom themselves. It will not be easy, but it will be worthwhile!
Find yourselves the one person that connects with your child and watch how your child blooms! Socialization through daycare and school has been a major help in aiding Noah in reaching milestones because he sees other children doing things and then he wants to do what they are doing. He watches them intently and then attempts to copy them until he gets it right. Encourage this behavior and reward it!
Above all, expect your child to be successful. Do not set limits on them because if you do then success will not be achieved. Our kids can do absolutely anything they want if they are given the appropriate tools and support for success.
We do not take “no” for an answer. If we are told “no,” we seek a second or third opinion. Whatever it takes to get Noah what he needs!
Above all just remember that your child is worth every single ounce of energy and time you invest in them. They can do anything as long as we prepare them!
Stephanie T., Noah’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 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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