Stories of Hope
Raylan has a neurological genetic disorder called Joubert Syndrome. The area of the brain that is underdeveloped has left him sensory sensitive, what is believed to be legally blind, significantly developmentally delayed (i.e. unable to speak, sit unassisted for sustained periods of time, walk or eat solid foods) and at risk for dehydration due to being in Stage 1 Chronic Kidney Disease. Finding care providers that are knowledgeable and patient with the approaches needed to provide care that meets each of Raylan's needs seemed like an impossible and maybe even unreasonable ask, especially the idea of getting day services and therapy in a unified setting. Moving Raylan to CRCC has exceeded anything we could have imagined was possible.
The benefit of having daycare, therapy and nursing resources in a single setting has not only reduced our worry, but it has made our life/work schedules much more balanced and made Raylan's therapy sessions much more productive. All of Raylan's therapies can happen onsite which reduces the time needed to get him to multiples locations for therapy. It was previously impossible to schedule in advance when Raylan would be in a mindset to focus on therapy and shifting between environments would often trigger overstimulated behavior that would otherwise render therapy sessions unproductive. Now that his therapies can happen onsite, therapy can be provided when Raylan is in a favorable mindset to work with the therapists. The continuity of care is evident in how the therapists show providers in the classroom techniques that promote developmental progress. This gives him constant opportunity to practice techniques between therapy sessions and incorporate them into more routine or playful activities that he may be even more inclined to participate in.
Raylan's current nursing needs are minimal but the nursing staff has been vigilant about understanding his baselines and identifying opportunities to improve on those baselines under their supervision. This has helped us coordinate care plans with his other medical providers. What has been even more incredible is just how much every member of the staff loves on Raylan. With Raylan's sensory sensitivity, he is very particular about environments where he is at zen and up until enrolling at CRCC, home had been his only zen place. Now, Raylan is as comfortable at daycare as he is at home where he has advocates that stimulate and celebrate his development as much as his close family does. The fact that CRCC also offers after hour weekend care has reduced the need to introduce him to new overstimulating environments and allow us an opportunity accomplish things in our downtime from work without disrupting his zen. We are incredibly grateful to be benefiting from such a unique and comprehensive solution for Raylan's needs.
I just wanted to thank CRCC for being such a wonderful part of my family’s lives for the past 3 years. We absolutely love CRCC and all its staff and have been so appreciative of the wonderful care provided to our boys over the years. I absolutely know they wouldn’t be where they are today without everyone’s help and amazing work you do. I also really want you to know how great the teachers Michelle, Kellie, Pattie, Morgan, and Kassidy have been. The boys have always been excited to go to school and I think it’s because they had such great teachers to go to every day. Everyone has always been great at communication with Brian and myself regarding the boys’ day at CRCC. The nursing team has been wonderful as well and they are great at what they do.
-Melissa and Brian
“I would recommend completing service hours at Children’s Respite to anyone. It wasn’t my first choice at the beginning, and now I can’t imagine completing my hours anywhere else. If I was not so busy with school I would have continued volunteering there, and in the future it’s something I would definitely consider doing. The staff there is one that you can tell genuinely cares about each of those children. They all go above and beyond their job duties and this is apparent practically as soon as you walk in. I am so proud that the community I live in has a place like this for those kids and their families.”
-Clarkson College Nursing Student
We have been so fortunate that our son does not require much nursing care. That said, I’ve always been impressed with the kindness the nurses show him and their awareness of some of the behavioral guides we use with him (not stopping to talk in the nurses station doorway, keeping his hands to himself, etc.) Susan obviously sings with him, as he asks her almost daily, and during the summer we loved Steph’s sense of humor and interaction with him at camp. I guess my point is that the nurses at CRCC don’t just focus on their duties with specific kids. They are completely involved in the entire CRCC community – and that’s AWESOME!
-Natalie and Rich
I just want to start off by saying that all the nurses and staff at CRCC are wonderful and words can’t express how thankful I am to have them in our lives and for taking such great care of my son who suffers from Stage 4 renal failure. Luckily he is stable and has been doing extremely well. His doctors assure me that his stable condition is because of my hard work and care. While I would love to take sole credit, I can’t because I know the nurses and staff at CRCC have a HUGE part in that. I can’t thank everyone enough for the care they give him while he is there. When we arrive and the excitement on his face when he sees his teachers and friends, I know that he is happy there and loves his time at Respite. You are all like family.