A reflection of challenges & appreciation from a military mom raising a child with special needs
Happy Month of the Military Child! It’s that time of year where we celebrate military-connected children for the strength, talent, resiliency, grit, and stick-with-it-ness they exhibit in the midst of constant transition and change.
No doubt, milkids are truly extraordinary in every way, including those with exceptional needs.
As a parent of five military-connected children, including Zeke, who was born with Down syndrome, I’m often asked what it’s like raising a child with special needs in the Active Duty military lifestyle.
My response: Difficult.
But some of life’s greatest gifts are cloaked in a challenge – like a jewel inside a stone or a pink starburst in an extra sticky wrapper. Teaching our children that greatness is measured by what it takes to discourage them and then rejoicing as they surpass expectations is a gem I wouldn’t trade. And this is not untrue for Zeke. The journey of being a military-connected kid has created in him a unique strength, bravery, and spunk – the undeniable “force” within him that makes it impossible to accept defeat.
It’s common for any parent of a child born with a disability to experience shock, sadness and fear over the unknowns of raising a child with special needs.
Will he have friends? Will he get sick often? Will he learn to read? Will he ever live independently? And as I reflect back over Zeke’s 15 years of life, one of the most profound and normalizing things communicated to me as a young mom was the truth that all children are unique and gifted with interests, skills, talents, and abilities regardless of developmental limitations. “Treat Zeke exactly like you would your other children” and he will rise to meet those expectations.
This, shared with me by a private school administrator, who the following week denied Zeke entrance to her school citing an inability to educate him.
I quickly learned that kind words and a caring, sensitive heart are not indicators of tangible resources including well-trained staff. So often, education professionals desperately want to provide a greater level of opportunity for their students, but lack the training, support, empowerment or resources needed to feel like it can be accomplished. This experience broke my heart, and lit the fire of passion for advocacy, collaboration, awareness, equality, and opportunity;
Zeke, now a freshman in high school, has successfully transitioned through five public schools, two private schools, and even three-semesters as a homeschooled student. He has friends all over the globe, is rarely sick, reads like a champ, and is on a promising pathway to live an independent life; he continues to make forward progress in academic learning and social relationships.
He’s experienced rejection, been denied access to services, fallen behind in meaningful academic progress, and year after year has unmet individualized education program (IEP) goals.
Yes, all of this is true.
When moving to a new duty station and making housing and school decisions, my husband and I consider community culture and attitudes toward disability, as well as support for professional learning. We have seen seasons of outstanding progress thanks to passionate professionals who implemented creative, out-of-the-box methods when fancy resources were limited. We also regularly struggle to gain and sustain appropriate medical care and equipment to meet Zeke’s unique health needs; also indicative of the transitory military lifestyle.
But when I consider celebrating Zeke during Month of the Military Child, the festivities are incomplete without expressing gratitude for the amazing community of professionals who, at every stop on the journey, have labored long hours in the trenches of love to help us cultivate Zeke’s superpowers of resiliency. Yes, there are many challenges to raising an exceptional MilKid, and this is why we continue to advocate and raise awareness, but also many wonderful partners along the way. They are the creative. The passionate. The determined!
We are so grateful for you!
Here are just a few of the education leaders who have made a personal difference for Zeke as a MilKid:
In the words of Rose Tico from Star Wars: The Last Jedi, “That’s how we’re going to win. Not by fighting what we hate, but saving what we love.”