By Elizabeth Cummings:

Elizabeth is a middle school special education teacher and mother of two boys from Kalispell, Montana. She serves on the Rural Institute Consumer Advisory Council and advocates for individuals with disabilities and their families.

I found myself unexpectedly entering the world of disability 13 years ago when my oldest son, Charlie, was born with complex health and developmental challenges.  Later diagnosed with autism and a genetic disorder, Charlie led me through the new worlds of early intervention, case management, children’s hospitals, and intervention plans.  It was an unanticipated and at times overwhelming process, but also filled with learning and many rewards. 

As Charlie grew older, I shifted my professional focus to special education, hoping others in my community might benefit from the skills I am learning in raising a child of my own with special needs.  I want to share with you a few of the amazing students I have the privilege to work with here in our state.

I’d like you to meet Dylan*, an intelligent and engaging young man with autism.  Dylan’s favorite part of school is our Special Olympics ski season. For seven weeks our students work with an adaptive recreation program in Whitefish, Montana to learn to ski, snowboard, and snowshoe.  Dylan comes alive on the ski slopes!  His enthusiasm is contagious, and he models the perseverance and persistence these programs are about. 

Inclusive recreation opportunities, which are rich in our state, have expanded Dylan’s world and shown others what he can achieve as well.  We are a community with strong nonprofit support for my students, demonstrating the generosity and compassion I believe many Montanans inherently have for others.

I’d like to tell you about Jessica, a sweet and social student who is quick to make you smile.  Jessica works hard and remains positive despite significant learning challenges.  With direct support and a curriculum that teaches to her learning strengths, Jessica is on the brink of truly learning to read, something her teachers might have thought impossible a few years ago.  I marvel at the progress she has made and know that she can continue to grow.  Her rate of learning differs due to her disability, but she continues to make measurable progress. 

I believe that Jessica, and many others, would benefit from the opportunity to receive educational services to age 21 in Montana, the only state to deny such extension of services.  It’s my belief that she would then be better prepared to enter the workforce and live independently in the future.

And I’d like you to know about Allison.  A student with multiple disabilities, Allison’s challenges include a complex behavior profile.  Allison needs ongoing supervision and a comprehensive intervention program to increase the possibility of her living safely and successfully as an adult.  Allison’s family has struggled to find community supports able to meet her behavioral needs, and budget cuts to direct support services in our area have reduced the few services they had.  Like many others, Allison’s family worries about who will help support and care for their child in the future.

I can understand and empathize with many of these challenges because my son has also been on our state waitlist for a Medicaid waiver for nine years.  Last year my child with a disability became a teenager with a disability, and despite my education and training, I still sometimes look at the coming phase into young adulthood with a sense of confusion and a little fear.  Who will help me navigate a system that seems to become increasingly siloed and disjointed as my child grows older?   Soon we’ll start the process of transition – who will help me understand, transition into what?

Raising a child with a disability has felt like a journey into new territory.  Exciting, at times somewhat frightening, and yes, always rewarding.  I’ve met many trailblazers on the way, and as a fourth generation Montanan, I feel prepared for the demands by the local culture of hard work and determination I was born into.  But more than anything, I know I need guides, an organized system of parent mentors and leaders to help show me and my child the way, laugh and learn with us on the journey.

So, thank you to parents, teachers, and actively caring professionals - for advocating for my child, my students, and the bold new world we know they deserve.

*Names and identities are changed to protect privacy.

Disclaimer:

The views and opinions expressed in this article are the author’s and do not necessarily reflect the official policy or position of the Montana Family to Family Health Information Center, the Rural Institute for Inclusive Communities, or the University of Montana.