Courtney Stinson is a resident of Washtenaw County, mother of two children, and married to her supportive husband, Jeff. Stinson’s first child, Nathan, was born completely healthy. When Stinson got pregnant with her second child, she expected she would also give birth to a healthy baby. The unexpected happened when her second baby, Ellie, was born. Ellie spent the first four months of life at the NICU and the Stable Vent Unit at University of Michigan Hospital after being transferred from St. Joseph Mercy Hospital at 7 days old. Ellie, who was born with low muscle tone, is on a ventilator to help her breathe and is fed through a feeding tube.
“When Ellie was born we didn’t realize there was going to be such substantial life changes,” Stinson recalls. “After Ellie was born, I mourned the loss of the child I thought I was having— one that would do all the normal activities like walk and talk. I think back to those first few days in the hospital as the darkest and most lonely moments of my life. I walked the hospital halls, unable to hold back tears. I passed by rooms filled with happy stories. Rooms filled with healthy, normal babies. My room was dark and lonely.”
5 Practical Tips to Make Lemonade out of Lemons
Ellie is now 2 1/2 years old and although Stinson acknowledges that there are still very dark moments, she has tried to make the best of the situation. Stinson says that parents who are in similar situations have to figure out how to make lemonade out of lemons. Stinson created her own book, Cooking For Tubies, website (courtneystinson.com), and blog (lifewithellie.com) to give support to other families who feel lost and unsure.
Stinson’s practical tips and advice:
- You aren’t perfect. Sometimes you’re in a really negative place. In those moments, I stop whatever I am doing and seek out an activity to redirect my energy. My advice is to someone or get outside and remember what you are grateful for.
- Find a group to join that feels right for you. It took awhile to find the group that was a good fit for me. It was really hard to find where I really belonged at first, but eventually I did. There is no replacement for being able to talk to someone who gets it because they are in a similar situation. Feeding Matters & Tube Feeding Awareness are two national online groups that are very supportive.
- Find the medical support you need. The staff at University of Michigan Children’s Hospital gave us that hope and to start to see the good in our situation. You should feel comfortable with all support including pediatrician or social worker. It is beneficial to find a case manager that you trust and is helpful because it can be so daunting to keep track of long lists of specialists and schedules by yourself.
- Life is meant to be lived. When you have a child with a feeding tube and breathing through a ventilator, you could worry about every little thing. I can’t keep Ellie home worrying she might catch a cold. I can’t keep her away from fun and activities forever. Life is meant to be lived. Some activities are extra risky like swimming, but Ellie loves the water. We embrace her life and jump in but with proper support and safety measures in place.
- Lack of support. We are fortunate to have a phenomenal dietitian on Ellie’s care team who supported my feeding preferences (blending real foods over formula feeding) from the beginning. I became aware at the lack of knowledge and support in the health-care community for blenderized tube feeding.
Finding the resources your child with special needs should have in order to thrive can be a daunting task. Stinson mentioned an “information gap” between providers and families. One Ann Arbor mother, Misty Gray-Kluck, took matters into her own hands in an effort to fill this information gap between families and resources available for children with Down Syndrome.
Gray-Kluck has a 4-year-old daughter, Tessa who has Down Syndrome. From age 4 months to 3 years, Tessa attended Early On, the State of Michigan early intervention program. Gray-Kluck believes that Tessa accomplished so much in terms of cognitive development due to the Early On program and staff. “We will be forever grateful for everyone’s hard work. The love, support and understanding from all of Tessa’s therapists was worth so much to us,” she says.
A Need to Fill the Information Gap
Gray-Kluck discovered that there were parents that did not know about the Early On program, Children’s Special Health Care Services, (CSHCS) or other support groups for their children with special needs. In an effort to lessen the information gap between families and the resources available to them, Gray-Kluck started an Ann Arbor-based nonprofit, Down Syndrome Head Start Program (DSHSP), that serves children in Washtenaw County and surrounding areas. The DSHSP’s mission is, “to encourage successful growth and development of special needs children through community resources, while providing support to these children and their families.”
DSHSP’s Programs include:
- Parent Special Needs Support Group.
- Special Needs Baby Playgroup (Age 0-3).
With future programs including:
- Special Needs Reading Program.
Community Wide Special Olympics Little Athletes Program for children age 2-7. Workshops focused on issues that affect the special needs community like understanding the IEP process, what to do after an autism diagnosis, etc.