How state-funded services help my daughter with CHARGE syndrome

Nicole Feeney and her three children.

Nicole Feeney and her three children.

April 23, 2015

This essay is adapted from a speech Nicole delivered at Deafblind Awareness Day, an advocacy event held at the State House on April 9. Many parents in Massachusetts rely on state-funded programs and services to ensure their children with disabilities receive the educational and developmental support they need to thrive. Read a full recap of the event »

Our daughter Shelby has CHARGE syndrome, a rare genetic disorder that causes congenital defects, health complications and varying degrees of deafblindness. Shelby was born in 2013 and spent her first five and a half months of life at Boston Children’s Hospital.

I could talk for hours about all the things Shelby is to us, how far she has come and what we wish for her, but I’ll simply say that Shelby is a very happy 18-month-old. She loves her “Mumma,” her “Papa” and her sisters, repeats “I love you” and has the cutest smile.

When Shelby was born, we had no idea what was in store for us. And I mean that about everything: Shelby herself, her health, our lives, how this would affect our 2 ½-year-old twin girls. I started the early intervention paperwork before Shelby was discharged from Children’s Hospital so that when she came home she could get plugged in right away.

Shelby is now blessed with a huge team that loves her and that she loves too. That team includes an early intervention generalist, occupational therapist, physical therapist, teacher for the deaf, speech therapist, sign language teacher and visiting nurse, who come once a week. Her teacher for the visually impaired (TVI) comes twice a month and a child life specialist, music therapist and massage therapist come once a month. On Thursdays, we drive to Perkins School for the Blind in Watertown for the Infant-Toddler Program’s play group. Shelby has been home for a little over a year now and with all the early intervention she has grown by leaps and bounds.

As great as Shelby is doing, as she gets older and explores her environment more we are noticing that it takes her a while to adjust to what is going on. If we “moo” like a cow for too long her smiles and laughter turn to cries – sometimes screams as if she is in pain. At the Perkins play group, the sound of toy robins chirping makes her laugh and smile, but the sound of the toy wren makes her cry and scream. It’s like she just doesn’t know what to do with everything going on around her.

As I have explored what our next steps might be to help her through this, I am learning more about individualized support. Shelby needs a bridge, someone to stand in the gap, someone trained to make sure her vision impairments and hearing impairments do not, for lack of a better word, handicap her. As Shelby grows she will need more than an aide or personal-care attendant coupled with a great TVI to help her make sense of the world. We know Shelby will need an intervener; a constant figure trained to help her understand information that comes in – and help her get out what she wants the world to know. Many people with deafblindness have an intervener who works one-on-one with them to help them interact with others, achieve their educational goals and more.

I know that the deafblind community understands the importance of individualized support but our lawmakers, insurance companies and other service providers need to understand how vital this is for our loved ones to survive, thrive and be as independent as possible.

This budget season, I hope that you will join me as I make time to appeal to state legislators about the need for adequate funding for specialized services like the ones that are helping Shelby and our family every day.