Impact Stories

Graham’s Story: Navigating Down Syndrome with the Support of EI

Navigating Down Syndrome with Early Intervention

Communication | Feeding | Motor | Sleep

Background

Christine and Mike were expecting their third child and at ten weeks in utero received the results of genetic testing that their baby would be born with Down syndrome. After processing this diagnosis, about 10 weeks later, they received additional difficult news that the baby was not growing, and they needed to prepare themselves for a worst-case scenario.

For parents of two young boys, their hearts were heavy. The future seemed so uncertain, as the doctors were unsure how long the baby would be able to stay and grow in utero, and told them it would be medically necessary to deliver the baby early. Christine prepared herself to be in the hospital, to be ready for when the doctors decided it was time. He clearly was a fighter as he lasted in utero weeks longer than medical professionals expected. Graham (a third boy!) was born at 32 weeks, weighing 2lbs 4 oz.

Graham remained in the NICU at Brigham and Women’s Hospital in Boston for 60 days, with Christine and Mike commuting back and forth while juggling how to make summer fun for their other two boys, Russell who was 5 and Drew who was 2.

With local family support and hiring a nanny, they started to navigate caring for Graham while learning more about Down syndrome.

Graham was finally released to go home, weighing 5 pounds right around his initial due date. Christine recalls being discharged from the hospital and being given a pile of information including resources and services that would be reaching out to help the family.

One of the services referenced in the pile was Partners in Child Development’s Early Intervention Services.

Early Intervention Services

The journey with Early Intervention Services began with physical therapist Karen Purtschert as it is common to start with gross motor skills including head control. Given the priority goal for Graham was growth, he slept a lot so Karen provided therapeutic PT services initially every two weeks. As he grew, physical therapy services shifted to weekly and incorporated rolling over, sitting up, and reaching for toys.

Partners in Child Development’s Early Intervention Services are provided in a child’s natural environment, typically at home. Graham’s older brothers were often home while Graham received physical therapy, so Karen naturally incorporated therapies that could include his siblings. She also offered strategies that the family could incorporate into their routines with two older siblings. “I loved that Karen helped us to find ways to make Graham’s therapies fit seamlessly into our everyday lives,” Christine said.

While early intervention physical therapy services were provided, a speech therapist was added to the team to periodically monitor Graham’s communication skills.

Feeding

Because Graham was a preemie, and had low muscle tone, Christine and Mike had been taught an effective side-lying method for feeding Graham initially during their time in the NICU. While this had worked well, Christine recalls being particularly anxious about transitioning Graham to an upright position for feeding, and eventually to solid foods. She was extremely concerned about choking and was unsure if his diagnosis of Down syndrome would affect his ability to chew and swallow as her other sons had. Beth, an occupational therapist from Partners in Child Development’s Early Intervention Services, helped Christine for several weeks, being right by her side as they worked together to try different foods and strategies to introduce Graham to solid foods while building Christine’s confidence and giving her peace of mind what would work best for him. “It was such a stressful phase of parenting a child with a disability, but Beth was a lifesaver. Having her present to reassure me during those initial attempts of giving Graham solid foods really helped to ease my mind,” Christine adds.

Help with Sleep

When Graham was one and a half years old, he was not sleeping through the night. She and Mike were sleep deprived and unsure what to do. Christine casually mentioned this recent challenge to Karen from Early Intervention Services who offered an EI sleep specialist to help.

Christine had sleep-trained her other sons, but she was not confident that such techniques were appropriate for a toddler with Down syndrome. The Early Intervention sleep specialist gave Christine reassurance and shared strategies for the family to try. This insight from Early Intervention Services was a huge help personally to get more sleep while also having peace of mind that their techniques were appropriate for Graham.

Communication

Today, the Early Intervention Services team includes a developmental specialist and speech therapist to help Graham express himself including simple signing and various tools to help Graham and his family communicate. Graham also attends a weekly play group in a language-rich room with three teachers where children practice separation and build social relationships, and learn through play.

While Graham’s speech is delayed, the speech language pathologist and developmental specialist from Early Intervention Services work with Graham weekly incorporating play time, songs, and signing. Graham loves this time with the specialists from Early Intervention.

Benefits to Child and Family

Graham will turn three in June which is bittersweet for Christine and Mike as services from Early Intervention stop at age three. Christine shares, “I feel sad that our time with Partners in Child Development’s Early Intervention is coming to an end. They’ve been such an important part of our journey over the past three years, and it’s hard to imagine not having that support.”

Christine reflects that as a mom of three, she was at times overwhelmed; there were school responsibilities to keep up with, the house was a mess, and the EI specialists were coming weekly. She recalls the EI team reassuring her that their therapeutic services and support were designed and intended to work for Graham and her family including her. They reiterated that the chaos of a household with three little boys was of no concern to them, putting her mind at ease.

This assurance helped Christine stick it out. She would see Graham’s progress and reassure herself that EI was working for him and for their family.

Graham’s gross motor skills are strong. He keeps up with his older brothers. He is starting to express himself more especially with his oldest brother, Russell who is now 8. Russell is very focused and proud as Graham does new things!

Early Intervention Services has been an amazing benefit to me and my family. Navigating the early years of a child who needs a lot of extra support was new to us, and their guidance made it so much more manageable. Their strategies, insight, and steady encouragement helped us every step of the way. We are truly grateful for all they’ve done for our family.

– Christine, mom, Andover, MA