Respite Helps Busy Families
Today, we’d like to introduce you to our second incredible guest speaker, Linda Vincent, who is mom to a young woman with Down Syndrome. If their story doesn’t make you want to hug your family a little tighter, we don’t know what will.
Linda Vincent, a busy mother
When I was thirty-seven years old, and twenty-one weeks pregnant with my first baby, I received my daughter’s diagnosis at a routine checkup. It went like this: My doctor – with tears in his eyes – said, “Linda, this baby has Trisomy 21. But it’s alright – we’ll schedule a late-term abortion and you can try again for a good one.”
And that’s the LAST conversation we ever had.
When Ava Elizabeth was delivered, by my new doctor at 3:00 a.m. on Thanksgiving morning, it truly was Thanksgiving. She was tiny and healthy and gorgeous.
Because she was a little bit early, she stayed in the NICU for 19 days, and that is where our journey with Developmental Pathways began. I didn’t call them – I had never even heard of them! They came and found us in the NICU. And totally understanding how overwhelmed we were, they joyfully, and very gently, led us through what some of our options and opportunities would be for the coming months and years.
As parents of kiddos with special needs, we stay pretty busy. Most of us have full-time jobs. For some of us, taking care of the hour-by-hour physical needs of our children is another full-time job. And even if our kids don’t need constant one-on-one attention, advocating for them can be yet another full-time job. We deal with forms, doctors, specialists, more forms, educators, financial planners, forms, therapists, waivers, even more forms, Social Security, Medicaid, forms, forms, AND FORMS.
As someone once said, “Oh, what a tangled web is weaved, when a child with special needs is received.” Or something like that.
Respite: Relief for families raising children with developmental disabilities and delays
Throughout Ava’s life, Developmental Pathways has ALWAYS been ready, willing, and able to assist us in understanding and interacting with the complicated assortment of agencies that will have a hand in our daughter’s future. They’ve even been the guiding hand leading us to take care of ourselves through respite.
One of the dictionary definitions of respite is a short period of rest or relief from something difficult or unpleasant.
And let me assure you – the education and assistance that DP has provided to my husband and me over the years definitely qualifies as respite! They have saved us countless hours of research, phone calls, paperwork, and frustration. And we spent most of those extra hours with our gorgeous daughter! We also spent some of those extra hours alone together, which resulted in another gorgeous daughter!
Having a second child added another layer to our need for respite services. As families, we must, by necessity, travel at the speed of our slowest members. And usually, those members will be our children with special needs. This can be so difficult for our “typical” children, who need just as much attention, encouragement and opportunity as their siblings. They need respite, too!
It’s essential for us to be able to spend time alone with our other children. It allows them to spread their wings and fly with undivided attention from Mom and Dad.
Also, it was time for Ava to get out in the world and start interacting more with her peers and with society at large without a parent present. For me, one of the most challenging aspects of having a “special” kiddo was letting go of her hand and trusting that she would be taken care of by other people when I wasn’t there.
My experiences with the programs we have accessed through Developmental Pathways have just about erased those insecurities. Thanks to the professionalism and kindness of the respite providers that we have worked with, I am now (almost) comfortable with leaving Ava in someone else’s care, knowing that she will be safe and well cared for.
Ava’s sister Zoë has attended sibling programs which have not only been fun for her, but have helped her to understand her sister and her family better. We’ve also attended events all together where enough assistance was provided that every member of the family could have a great time.
One of the most wonderful aspects of respite for me is that I can attend Ava’s events as a spectator instead of a caregiver, and have the simple joy of WATCHING my kid do something fun and exciting on her own. There’s just no greater pride.
So in conclusion, Ava’s life is a climb. Developmental Pathways, and in particular their Respite Initiative, provides us with the tools and assistance we need to help her make it to the top, and to keep our family functional and fabulous. For that, we say thank you!
If you haven’t yet, we’d recommend watching Linda tell Ava’s story in the video below. We promise it’ll make your day brighter.
Share your story with us at support-communications@nmscolo.org.
Be sure to visit our Community Impact page, or read more Family Stories to hear more about the other incredible families we have the privilege to support.