Week 3 of our Respite Series features the Marquez family- a name that the Developmental Pathways and SUN Foundation community probably know well. You can catch our previous 2 posts about the Pinkertons and the Olsens on our blog as well.
If you’re new to the topic of respite, it is simply a break for the primary caregiver. This break could be an hour to run errands or a week of camp for their child with a developmental disability. In the last year, our families have told us that they want more respite opportunities. They’re not alone in seeing the benefits of respite, either. A 2004 study done by the Oklahoma Respite Resource Network reported:
- 88% of caregivers agreed that respite allowed their loved one to remain at home (as opposed to institutionalized care)
- 98% of caregivers stated that respite made them a better caregiver
- 5% of caregivers said respite contributed to the stability of their marriage
So, you’d think everyone would be using respite funding and opportunities, right? Sadly, no. According to the 2015 National Alliance for Caregiving and AARP Study, 85% of family caregivers still don’t receive respite for a variety of reasons. We’re out to change this statistic in the Denver area.
THE NEED FOR RESPITE
We started the Respite Initiative in 2016 to respond to families’ requests for greater funding and opportunities to care for themselves & their loved ones. We’re also highlighting this need for our 2017 Colorado Gives Day campaign in partnership with The SUN Foundation. We believe the best way to illustrate the positive impact of respite is to show you in the lives of real families. This week’s family was kind enough to tell us their story last year and speak at our Shining Stars Celebration in October. We don’t think you’ll be unchanged after hearing how respite helped transform their son’s life and their marriage.
INTRODUCING THE MARQUEZ FAMILY
(written by Dad, Joe Marquez)
My son, Justin, was born with a rare metabolic condition that left him intellectually and developmentally disabled and in desperate need of a liver transplant at age 2. Although we were connected with Pathways early on, it wasn’t until 2 years ago when Justin was 15, that I believe their support literally saved his life.
In the fall of 2014, Justin started high school. Unbeknownst to us, he had severe social anxiety from having been bullied for the previous two years in middle school. Now, he found himself in a new environment. He didn’t know how to make friends or reconcile being cognitively 4-5 years behind others his age. As a consequence, Justin developed “selective mutism.” This means that he stopped talking to everyone because of severe social anxiety. He also started having psychogenic seizures and contemplating suicide. Justin spent several weeks in the hospital psychiatric unit. Even when he returned home, he was still dealing with depression and social anxiety.
An online search led me to a weekly program that taught group social skills to kids like Justin. Unfortunately, the program’s $520 monthly tuition was far more than our family of 5 could afford. So, we turned to Developmental Pathways who covered most of the tuition bill. After 3 months of the program, Justin was talking again. After another 7 months, he had the confidence to interview for a position at Walmart. Now, two years since starting the program, Justin’s social anxiety is a thing of the past. In fact, he recently took his girlfriend to the homecoming dance. He still struggles to advocate for himself all the time, but without out the funding for the social skills training I believe my son would have continued to be selectively mute and suicidal.
The Family Impact
It’s not only Justin’s life that has changed—it is our whole family’s as well. Earlier this year, our family received three Saturdays of respite while Justin participated in all-day outings through Developmental Pathways. My wife and I used this opportunity to make our other two sons the center of attention. We are a stronger family because of this. I struggle to think how this would have been possible without the funding assistance that made Justin’s respite excursions free of cost to us.
Justin is now a legal adult and we can honestly say we’re excited to see him grow into a hardworking, talented individual. We credit this feeling to The SUN Foundation and Developmental Pathways because we know they are ready to respond to the challenges we may face in the future as we’ve seen them do over the past 17 years.