Blog #249~DS-ASD New Year Goals
Happy New Year and we hope you had a nice holiday. The Christmas decorations are packed away. Now, a clean slate is laid out for 2023. There is something hopeful about starting a new year. It’s an opportunity to re-set, make goals and resolutions. At the same time, those resolutions can often fall by the wayside leaving you feeling like a failure. I have those moments as a parent of a child with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 28 years old, and he lives at home with us. He has not been able to go back to his adult day program or qualify for any others. This is due to staffing shortages and the complexities of behaviors and communication deficits associated with DS-ASD. Fortunately, we have a state waiver that pays for respite care and a great team of caregivers who work with Nick. This enables us to work and enjoy leisure activities that are so important for self-care. Today, Nick completed his structured teaching activities independently as he does each day at home. These activities are part of his routine which is a great way to support individuals with DS-ASD. He is very good at them and feels accomplished.
Nick doing structured teaching activities independently 🙂
Nick has settled in covered with his weighted blanket and tappers in hand. This morning he is watching classic Thomas the Tank Engine season 3. I use to feel guilty that he wasn’t watching age appropriate shows. But now I realize, this gives him a sense of comfort, much like the Bravo and Hallmark shows do for me. So, as I write this piece these questions roam in my mind:
*What more can I do to support my son?
*How can I help him be more independent?
*What else can I do to redirect and manage his behaviors?
*Do I have the bandwidth to accomplish this, run the household and work my outside jobs?
One of the worst things about being a parent and caregiver is the guilt that we feel about not doing enough for our children. This is where I want to talk about my new years goals, and what I want to share with other DS-ASD families. My goal and hope for you this is year to be kind to yourself, by entering and exiting each day with grace. I am going to remind myself and other families that this DS-ASD journey that we are on is challenging, exhausting, frustrating and uncertain. We are going to stumble, but we also get up and do it all over again each morning. I am going to forgive myself when I am impatient, and I want you to do that too. I plan on reminding myself that deep inside the ongoing passion and love for my child is what fuels me to support and advocate for him and other families…… and I am going to remind you of this in my writing and presentations for 2023.
Let’s take a deep breath, laugh, cry and celebrate those successes together. Remember this: The fact that you are reading this blog, searching for answers and trying your best is a testimony of a good and loving parent. Know that you are not alone in this journey. May we all feel optimistic for the new year and let that hope carry us through the rough patches. The DS-ASD journey includes many stumbles and falls, but a back step can also become a cha-cha. I’ll be here to prop you up when you fall, sharing ideas, strategies, empathy, hope and encouragement. That is my passion and commitment to my son and other families on this path. Cheers to the new year and exercising self-care by being kind to ourselves.
That’s what is in my noggin this week.
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