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Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

Jul 13, 2022

On this episode of the podcast, you will hear an amazing story of resilience and hope.This episode originally aired back in August of 2020. This is the most shared of all of our podcast episodes; you will quickly learn why after listening to this inspiring story. Meet Maura Senneff, mom to sweet Ryan. Ryan is a thriving 8-year-old boy who has Down syndrome. The amazing advocate by his side, his momma Maura, describes that “zooming out” and looking at things from a wide lens helped them turn Ryan’s health around.She talks about small changes and the "no limits" attitude their family lives by.

[1:39] Maura shares about her family and introduces us to Ryan and his journey with Down syndrome

[2:40] Maura explains how resilient Ryan is despite his struggles with chronic illness for his first six years of life

[3:27] Never giving up was key to their success at navigating Ryan’s diagnosis of Down syndrome

[4:00] Maura shares how Ryan’s diagnosis with Down syndrome was not going define him and put limits on what he can and can’t do

[4:56] Maura shares the deep meaning behind advocating for Ryan; it meant the idea of unlocking potential and removing barriers for generations to come

[5:23] Maura explains how they came to learn of Ryan’s unexpected Down syndrome diagnosis at birth

[7:12] Maura shares that during her prenatal care there were no markers on any of her ultrasounds for Down syndrome

[8:04] Maura began to have what she thinks are braxton hicks contractions but learns she is in labor

[9:07] Maura describes Ryan’s quick delivery and the time that lapsed before getting to see him

[9:32] She describes how Ryan wasn’t latching and crying like her first baby and something felt wrong

[10:45] Maura describes the moment she told her husband Jack that she thought Ryan may have Down syndrome

[10:56] She explains through tears how she feels sad about the emotional roller coaster of emotions she went through the first few days and how there is immense joy despite the diagnosis

[12:51] Ryan goes to the NICU for additional testing and Maura describes how she was mentally preparing for the diagnosis of Down syndrome

[13:45] Maura shares how her husband saw their family pediatrician come in with his Saturday work clothes on and was how it was an indicator that something serious was happening

[14:07] Maura explains the emotional moment they heard the official diagnosis of Down syndrome

[15:30]  Maura explains how with Down syndrome, there is a variety of health complications and Ryan was fairly healthy despite the circumstances, but struggled with acute illness

[18:26] Maura shares how she and her husband didn’t know much about Down syndrome and special needs before meeting their son

[19:57] Ryan was reading before he learned to talk. Maura did not know if he was going to talk but ensured that he had access to as much therapy as possible 

[22:37] Maura shares how she advocated for Ryan during one of his ICU stays

[24:02] Ryan had a low white blood count at birth and had several emergent blood draws over the years and Maura shares her desperation for answers

[26:09] Maura explains how an ABA therapist was a pivotal force for Ryan to potty train

[28:00] Ryan did swimming lessons at 18 months old, could roll over and do things in the water before he could do them without his walker

[29:46] Maura shares how other people have reached out to her after finding her on instagram and how his story has given them hope

[31:00] Maura shares about the language surrounding Down syndrome and how it made her feel

[33:50] When children have a diagnosis, it is important to not put what they can or can’t do in a box

[35:40] Maura explains how the school called her about Ryan’s therapy, stating that he did not need it any longer. She had his therapists train the teachers on his behavior plan

[37:25] She shares the one thing she wished she would have done in early Ryan’s diagnosis is to meditate and how many medical professionals urged her to do so as it is a part of their daily practice. It helped her not get overwhelmed in her thought life

[41:00] How their family added meditation into their daily routine for calm minds,manage stress and think clearly

[43:05] Maura explains how going through the emotions and feeling like your head is spinning is normal but you don’t need to stay there. Meditation is so crucial to her to get through the days. 

[48:00] Maura explains how ABA therapy was a game changer and how she wishes that she would have started Ryan in this type of therapy at birth 

[50:00] She shares about how when she broke her foot badly and told the doctor she would do anything to help her broken foot.. He sent her to a Chinese medicine doctor for acupuncture and had immediate pain relief. She vented to the doctor about Ryan’s situation and she suggested she bring him in for treatment

[54:00] Maura explains how thinking outside of the box and trying things that are not typical are SO impactful to their experience. Find your tribe that will sit in the trenches with you.

[55:50] Within 2 weeks of using functional medicine, Ryan was able to have regular bowel movements and his far-sighted vision changed by a third then even more in the weeks to come. Ryan’s labs were all in normal range within a few weeks. 

[01:00:00] Maura shares how Ryan’s thyroid level changed drastically after acupuncture

[01:03:42] She shares how Ryan has shown them that ANYTHING is possible and how much he has taught them about achievement

[01:06:45] How Maura honed in on working on gross motor skills for Ryan as she knew it would help change many things for him. They improved drastically after 5 or 6 treatments

[01:07:43] Maura had Ryan participate in a study that focuses on brain function in children with Down syndrome and the doctor doing the study could not tell that Ryan had Down Syndrome by looking at the MRI. 




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