The Jordan & Heather Callister Story

The Jordan & Heather Callister Story Parents of a son with both Down Syndrome and Autism

Outline  Brief

History  Negotiating Services  Connecting with other parents  Highs/Lows we’ve faced as young parents

This is Liam

Liam’s Story Liam will be 3 in June. He has both Down Syndrome and Autism.  He currently is on a Feeding G-Tube and is on oxygen while he sleeps.  He’s learning to crawl, not walking yet. His cerebellum didn’t fully develop.  He was born 3 months early, weighing at 1 pound, 4 oz.  He was in the NICU at PCH for 3 months. 

First time holding Liam ď‚› It

was almost 2 weeks after he was born before I could hold him.

Liam continued…

We knew at 13 weeks that he had a 93% chance of having Down Syndrome with the DNA testing results.  Period of grief.  We found out at 25 weeks through an echocardiogram that he stopped growing at 22 weeks.  Had to go on somewhat bed rest and did stress tests daily. Then born at 28 weeks emergency C-section. Life after that was changed forever. 

Liam…  He

almost died twice. He was life-flighted from IMC to Primary’s.

Negotiating Services  Started

with Social Security during his NICU

stay.  Social Worker walked us through everything.  Worked with 9 different doctor specialists.  After discharge, at Primary’s 2-3 times per week with multiple appointments.  At discharge, we were told about the Medically Complex Children’s Waiver Program which was a new pilot program.

Negotiating Services Social Security ended when he left the NICU.  The MCCW Program application was almost impossible to complete online.  The website kept freezing up.  They wanted all of his specialists records. He had a novel from being in the NICU for 3 months.  Doctors were so very helpful. 

Services…

The MCCW Program gave Liam Medicaid and covered his copays and mostly whatever his primary insurance wouldn’t cover.  Provides 13 hours of much needed respite care per month.  Pays for early intervention to come to the home.  The cost for a special needs child is very high with all of the special toys and things early intervention recommends we get him. MCCW helps to alleviate that burden so we can pay our bills and contribute to society by paying our taxes. 

Services…

DDI Vantage: Liam has a speech therapist, physical therapist, occupational therapist, cognitive developmentalist, and a sign language specialist.  In August 2017, Liam was also diagnosed with Autism. We tried to figure out what group we belong to? Pre-maturity, Down Syndrome, Autism?  In the process of getting ABA services which is 1530 hours week of more intensive services. A lot to coordinate. 

Services…  Best

pediatrician! She is one of 2 or 3 child developmental pediatrician’s in UT. Use to run the Down Syndrome Clinic when they had it at Primary’s.  She saw how sleep deprived I was and gave me a parental stress test—through the roof.  She went to bat for us and helped us get night time CNA services covered through Medicaid for Liam’s chronic sleep apnea. We had to go through court and were told “no” twice but persisted.  Sent everyone thank you cards. Lets public leaders and politicians know what’s working.

Services…  HB100:

MCCW Program to continue.  Emailed and called senators and politicians.  A lot of work to get involved but it makes a huge difference.

Connecting With Parents 5

different FaceBook Groups: Intermountain Miracles, HB100, Down Syndrome Groups, etc.  Parents connect rather easily and are so welcoming when they know we have a child with Down Syndrome. Such a great community.  Parents who “get it”.  Mom’s Night Out  Look out for each other and tell each other about tips to help child. That’s how I found Liam’s pediatrician.

Community Support

Howdy Ice Cream Shop

Highs & Lows Having Liam  Sleep

deprivation  Chronic medical issues

Lows contin…  How

to share updates with people.

People just don’t get it.  Feeling isolated during RSV/Flu season months to keep him healthy.  Family trips-a lot of things to haul.  Dealing with multiple appointments.

Lows continued…  Trying

to find child care.  Destruction of toys with slobber habits.  Light up toys get ruined within 1 day but they are his favorite toys.  Isolated from other parents who have play groups with normal developing/healthy kids.

Highs  Liam

brings so much joy!  He reaches people in ways that nobody else can.  He gives the most incredible hugs and it just makes your day.  If Liam voluntarily gives you a hug, consider yourself lucky!

Highs contin…

Wiggles right in your heart

Highs ï‚› We

have fun with him

High contin…

Get thrilled with small successes.  He’s taught us how to be more patient and compassionate towards others. Our society could use more patience and compassion.  Amazed at how many people have stepped up to help taking turns to watch him so we could attend church together.  He’s the sweetest and most loving kid. Melts your heart.  We could have gone to medical school after all we learned from the NICU and afterwards.  Love people where they’re at in their process. We all have our “disabilities”. 

Thank you!

Contact Information  Jordan

Callister, CPA at CBIZ 801-644-1881 jcallister@cbiz.com

 Heather

Severn Callister, LMFT 801-5051332 mftheather@gmail.com