Blog #226~Beyond Down Syndrome: A New Course
World Down Syndrome Day is coming up on March 21st. This day 3/21 was chosen to represent Trisomy 21, where there are 3 copies of the 21st chromosome. WDSD highlights the importance of promoting awareness, understanding, inclusion and acceptance for individuals with Down syndrome. Next week, I will provide concrete ways that you can help promote WDSD.
But what if there is more beyond Down syndrome that families are facing? Did you know that approximately 18% of children with Down syndrome have a secondary diagnosis of autism? This dual diagnosis of Down syndrome and autism (DS-ASD), presents additional challenges with communication impairment that can lead to behavior problems.
Here are some of the signs and symptoms from the National Down Syndrome Society (NDSS) of a dual diagnosis of DS-ASD:
My son Nick, is 26 years old and has a dual diagnosis of DS-ASD. Ten years ago, I started writing about my journey and this new course our lives took, when Nick got a secondary diagnosis of autism. I felt very alone. I found myself pulling away from our local Down syndrome support group activities, because my son no longer fit in. He did not engage like his peers with Down syndrome. His repetitive movements (rocking, hand flapping, unusual play with toys) and vocal humming sounds made him stand out from the crowd. This new course was different than the one I planned. Nick was very delayed in toilet training and his speech deficits lead to behavior problems. As he approached puberty, his lack of speech and understanding what was expected, led Nick to become very frustrated. My son had no voice and his actions led to dangerous meltdowns.
What I soon learned (when Nick was 10 years old), is that I dealing with way more beyond Down syndrome. There was no way that I could navigate this course alone. Once I sought guidance from experts, we were able to give Nick a voice using a picture exchange system (PECS). Together with the IEP team, we determined what behaviors to target and developed a positive behavior support plan (BSP). The two key components that helped Nick was giving him a voice and finding the triggers that were causing behavior problems. We sought help from the school district’s autism specialist. The IEP team then, put supports in place and we all received training to help support the secondary diagnosis of autism. It is critical to identify target behaviors, and make a game plan to support a child before they escalate to a boiling point and have a meltdown. It’s imperative to write in additional supports to address communication including visuals into the IEP. A reoccurring theme in my blogs is the need to address speech and behavior collectively, as all behavior is a form of communication. Visuals are key for communication, but also for navigating daily life in the form of picture schedules, social stories and learning tasks. These visuals are the blueprint for your child to understand what is going on and what you are expecting from them, and in turn helps to reduce anxiety levels.
My mission for the past ten years has been to make this DS-ASD journey easier for families following a similar path, and to open the eyes for other’s to understand the complexities and challenges associated with DS-ASD. This path that I’ve been on with Nick has not been easy. Early Intervention after birth and over the years, was critical to helping Nick reach developmental milestones. Our family has weathered a lot of storms, but with each– the sun came back out and we learned a lot along the way. Now, I am ready to share my journey with you!
I am pleased to announce my book and the journey beyond Down syndrome:
A New Course: A Mother’s Journey Navigating Down Syndrome and Autism launches May 5, 2020 and takes a deep dive into the complexities of what many families face raising a child with a dual diagnosis of DS-ASD. None of us can escape life without challenges. We each have our own journeys and individuals with DS-ASD are unique and may not be as severe as what we experienced with Nick. Our struggles at times were unsurmountable. But if you are an avid reader of my blog– you know that I’ve guided you down a path and showed you how Nick has become the best version of himself given a dual diagnosis of DS-ASD. Each chapter concludes with a 3:2:1 (3 Lessons I learned, 2 takeaways to use in the future and 1 question or concern I had during that particular time). At the end of the book, I’ve included my version of an appendix, with the final lessons I’ve learned on this journey. These final lessons are taken from my blog entries, that I’ve been writing since 2012. A New Course is available for pre-order now on Amazon!
My passion is helping other families navigate this new course beyond Down syndrome. As a DS-ASD consultant, I am determined to assist families to find resources, offer support and guidance to make their journeys smoother. I hope my story opens the reader’s eyes and starts a conversation of what it is like to raise a child with the unique challenges associated with DS-ASD. In doing so, perhaps the reader might gain better understanding, awareness and compassion for families dealing with DS-ASD and other complex special needs.
That’s what is in my noggin this week.
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