Updated: Jun 20
Chaya's energy and initiative shine through and she continues to blossom
Our entire philosophy in raising Chaya has been: accommodate, accommodate, accommodate. She has always been an independent person and we believe our job is to find ways to allow her to do things for herself.
The challenges that have come up are due, not only to Down syndrome but the fact that Chaya is autistic as well. This dual diagnosis is rare enough that we have often felt alone and found ourselves fighting the systems in place to help because their understanding of each diagnosis is distinct and separate, yet the combination is often misunderstood. We’ve had to educate many people and their backing organizations on how the two overlap and how that presents in Chaya, specifically. We are by no means experts on Down syndrome or the dual presentation of Down syndrome with autism. We are experts on Chaya, though!
At 15 years old, she is an exuberant light who shines love, care, and empathy on everyone she meets! She has a quick wit and a biting sense of humor that will first surprise you and then delight you. Chaya is smart and loves reading in general. Lately, it’s been anatomy books. She wants to be a biologist and study the human body. There’s no doubt in our minds that she could, given her determination and self-awareness.
Thora, Chaya's mom, shares an inspiring story of how they nurtured Chaya's independence throughout her childhood. Their story and many others provide inspiration and sage advice with The Essential Guide for Families with Down Syndrome.
Our job is to nurture that and guide her to grow and become an independent adult. When she was young, maybe 3 or 4 years old, she started that toddler stage. You know the one, where “I do myself!” and she just never stopped. We knew pretty quickly that we needed to be building and stacking skills. So, with the help of her teachers and therapists, we began working toward the necessary skills that would eventually become reading. Chaya always loved books and we knew reading would open a door to so many things for her.
We read to her every day and picked a letter for her to identify whenever she saw it. She would get so excited when she’d find the letter ‘D’ and sound out, “dee! dee!” We’d pick harder and harder letters to say until she was able to make sounds of them together and she was off. It wasn’t long before she was reading basic words and then books.
We did this with every evolving skill. When we saw an area in which she was struggling, we’d try skill stacking and when it didn’t look like it was going to work, we started thinking of accommodations. Brushing teeth is a great example: Her fine motor skills weren’t there yet, and we didn’t want her to give up, so we found a wide-handled electric toothbrush that required minimal fine motor control and taught her to use it. She was so proud to be brushing her own teeth! The toothpaste mess was another story! In fact, we found a toothpaste product that comes in little single “serving” bites that she just chews to release it and that’s how we avoid cleaning the bathroom twice a day, haha.
These days, Chaya has a system for pretty much everything. I think that’s thanks to the autistic need for routine. Her day includes getting up and watching her favorite show for a bit, then she comes upstairs, takes her medicine, makes breakfast and gets ready for the day. She’s learning to count and use money and to find things at the grocery store using the signs to guide her. It won’t be long before she’s almost entirely independent and able to do whatever she wants with her days. She’s trying to convince us to give her the house once she turns 18. Maybe not whatever she wants, haha!
Thora, Chaya's mom
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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
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