Blog #241~DS-ASD In Praise of Caregivers
November is National Family Caregivers Month, it is a time to recognize and honor caregivers across the country. Did you know that there are over 65 million Americans caring for aging and disabled loved ones in the US? My son, Nick has a dual diagnosis of Down syndrome and autism (DS-ASD). We are very fortunate to have wonderful caregivers to support him. This allows us to work, get out and enjoy activities outside the home.
The needs of individuals with DS-ASD are complex and behaviors can be challenging. It can easily burn out family members trying to manage it all alone. Families can access funding for respite care by checking to see if their state has a Medicaid waiver or other programs for individuals with a disability.
For more information click here:
https://www.medicaid.gov/medicaid/section-1115-demo/demonstration-and-waiver-list/index.html
I want to honor the amazing caregivers who work with our son, Nick. He enjoys their company at home and out in the community. The Medicaid home and community based service plan here in Illinois pays personal support workers who also work on goals for Nick to keep up with his skills and communication.
As I mentioned earlier, Nick enjoys their company. On many occasions he will grab pictures of the caregivers out of his Picture Exchange Communication System (PECS) book and hand them to me. A PECS book helps Nick to communicate his wants, needs and feelings. Individuals with DS-ASD can benefit from using pictures to express themselves. It is very evident that Nick loves each of them and they have all become part of our family.
Thank you to Miss R., Jodi, Kelsey and Lisa for your love and support. We praise all that you do for Nick and our family. We honor you this month and every day of the year! That’s what is in my noggin this week.
~Teresa 🙂
Down Syndrome with a Slice of Autism 
And how do you find these wonderful people? My Son too has Down syndrome and Autism. He is 26 and since Covid he has not been able to attend any programs because he will not keep a mask on. I cannot find workers especially during the daytime for him now.
Nick hasn’t been able to attend his day program either due to Covid and staff shortages. His caregivers are all former teacher’s aides from when he was in high school, post-secondary transition and adult day program.