Our
Story: One Family’s Growing Relationship with FSN
Brooke P. Juneau
“Rare disorder,” I heard the doctor say. “Developmental delays…cerebellum…motor wiring…difficulty with reading…” The words were clear enough, but I was having trouble piecing them together. The bad dream that had been haunting me since my son had been born was coming true. My baby was being diagnosed with a disability.
What a mix of emotions: fear, numbness, and intense love and protectiveness for my sweet, strange little baby. There was also relief; after seven long months of knowing in our hearts that “something wasn’t right,” we now had a diagnosis to explain why our little boy had never looked into our eyes, nor made any progress toward rolling over. We soon became experts on the rare condition known as ocular motor apraxia.
Over the next three years, we acquired a new “family” of wonderful teachers, therapists, and specialists, all of whom supported Riley’s development – and our adjustment to his special needs. Because we had come to rely on this team so much, we were petrified when a job change forced us to move to a new city on Riley’s third birthday – a city where we had no family, no friends, and no professional support system. We felt as though we’d been thrown into the middle of the ocean without a buoy in sight, unsure where to turn for the therapeutic services Riley needed and the emotional support we were craving for ourselves. Luckily, it wasn’t long before a new acquaintance invited me to Moms’ Group, a program offered by our local Family Support Network.
At first, I wasn’t so sure I wanted to go. Was I really ready to bare my soul to a group of total strangers? Would this be a roomful of crying women with tales of woe more devastating than my own? My fears vanished as soon as I arrived. Laughter flowed out of the meeting room. I was warmly welcomed, and introduced for the first time to people who have since become dear friends. These Moms really gave me “the scoop,” eagerly answering my barrage of questions about local specialists, service providers, and school programs. Our situations were very different – yet I felt as though we shared a profound common bond. As I drove home that night, I noticed for the first time that our new city felt like home.
Moms’ Group was just the tip of the iceberg. As the years passed, I relied on FSN to give me current, accurate, readable information and empathetic support during all the twists and turns of Riley’s early childhood: when he was additionally diagnosed with autism and, later, with a rare motor disorder called Joubert syndrome; when we learned, with a mix of excitement and trepidation, that we were expecting our second child; when we were making decisions about Riley’s Kindergarten placement; and even when we just weren’t sure we had the strength to see the hard times through. I volunteered to become a Support Parent, and the training process gave me an opportunity to reflect on my own experience, to heal, and to prepare to give others the support that had meant so much to me as I adjusted to parenting a child with special needs. I can honestly say that all of my connections with FSN were critical to my belief in my own ability to give Riley what he needed – and in his ability to succeed.
Today, I am proud to be an FSN employee, helping parents whose children have been newly diagnosed begin their journey. This has been the most rewarding and gratifying work of my life. To tell a parent who is frightened and overwhelmed that he or she is not alone is such a powerful gift to share. My mission, personally and professionally, is to keep as many families as possible out of that ocean of uncertainty, offering the resources and supports they need as soon as they learn of their child’s condition.
Meanwhile, Riley is thriving in an inclusive second-grade classroom. He goes to birthday parties, has friends – with special needs and without, makes goofy jokes, writes stories, draws reams of pictures of school busses, and recently sang his heart out alongside his classmates in his school’s Spring Concert. His little brother, Hayden, showers him with hero worship – as long as he doesn’t take too long a turn on the backyard swing. Each day with them both has been an indescribable learning experience. I cannot imagine our family being any different – nor would I choose to change anything about our lives.
Riley celebrates his 7th birthday with pals from school. Riley and his #1 fan, Hayden.
I sometimes imagine this elusive thing called “acceptance” as a fantastic vacation home. The first year a child is diagnosed, you don’t get to spend much time there – your mind and your heart are working overtime to earn this luxury. As the years go by, you have a little more time to spend in this place, where you allow yourself to relax and enjoy life just as it is. None of us gets to live in our vacation home every day. The real world always beckons us back, with new transitions and new challenges. But it’s these struggles that make us appreciate our retreats – that remind us to be proud of all of the work we’ve invested in building such a peaceful, happy place for ourselves and our families.
I am so grateful to the Family Support Network for helping me and my family, in so many ways, to find this place in our lives. And if you are a parent new to this experience, I offer you my hand.
Sherry's Story
When we took our son to the Children's Developmental Services
Agency (CDSA) evaluation, I was devastated when they told me
he had autism. I am sure most of you know that feeling, like
your whole world has been turned upside down. When I received
the CDSA report in the mail, they included a newsletter from
the Family Support Network (FSN) of Wake County. I read in the
newsletter information about getting a support parent. I emailed
FSN within a few days about getting someone. My support parent
called me the day after getting my email. She told me her son
also had autism. She called on a day when I was feeling particularly
down and defeated after taking my son on a play date with a
couple of my friends and their boys.
I
talked to my support parent and realized there were lots of
other parents out there going through exactly what we were,
and that there was LOTS of information and help available. For
the first time, I felt like we weren't alone. A couple of days
later, I received a package in the mail from my support parent
with all kinds of great information on autism, treatments, resources
in the area, etc. She calls and checks in with me from time
to time to see how I am doing and if there is anything she can
do for me. I can't describe how wonderful it is to know there
is someone I can call anytime I need her.
Sherry
W., Wake County
