Wednesday, April 23 2014

Our Story



Our Special Needs child was born in 1992 as a "failure to thrive" baby, sleeping only 3 hours a day and requiring constant care and medical attention. At the age of 6 months, Courtney was diagnosed with cerebral palsy and developmentally delayed by a pediatric neurologist. Because of her sleep issues and complicated needs, the doctor couldn't give Courtney much chance for a quality life and strongly suggested we place her in the Levinson Center, a center for children with severe or profound intellectual disabilities. Raising our daughter in her first years of life was fairly difficult at best.

When Courtney was one and a half years old, she experienced a terrible episode where she didn’t fully sleep for eleven days straight. Her brain wouldn't completely shut down and she alternated between REM sleep and an awake state every couple of minutes, waking up screaming. She had to be placed into the ICU at Millinocket Regional Hospital where the doctors administered doses of sleep medicines in an attempt to make her sleep. None of these treatments were successful and she was eventually transferred to Eastern Maine Medical Center in Bangor, where a pediatric neurologist was able to get her to sleep. And when she finally fell asleep, she slept for almost two days.

Immediately after that event, we took Courtney to a sleep clinic in Boston. Her doctors placed her on a sleep medicine rotation using harsh and powerful drugs that were normally reserved for adults, such as halcion, ativan, clonidine and klonapin. On this rotation for years, the prevailing idea at the time was to “swap” out each drug over two week periods so they wouldn't lose their effectiveness. It was an extremely terrible time for her... she exhibited wild behavior on the halcion - grabbing, digging and scratching - and the ativan made her cry constantly.

Courtney's sleep patterns improved, but they never became normal. There were nights she would stay awake all hours screaming or crying or babbling… finally falling asleep at 3 or 4 in the morning. During these nights, we would sleep in shifts. If Dad had to work days Mom would stay up with Courtney so he could get his rest… if Mom had to work days, Dad would stay up until Courtney fell asleep.

By 1995, Courtney was finally able to stand on her own and was also outgrowing the crib that she still slept in. Because of her inability to be cognizant of her surroundings and her inability to sleep, we realized that Courtney could not transition into a standard twin-sized bed. Fearful she might fall out of her crib, we sawed off its legs and placed pillows and mats around it. Courtney still managed to fall out and hurt her left arm, sustaining an injury that affected her for nine months.

It was obvious we needed a safe solution for our daughter. One doctor suggested that we completely strip her room of everything, place a bare mattress on the floor and lock the door from the outside to keep her inside. We couldn't do that because we knew she could still hurt herself on the heating system or the electrical outlets or maybe break a window. We contacted our insurance company with the hope they might help us purchase a special bed to ensure that Courtney would be safe through the night. The insurance company flatly refused to supply any assistance at all.

Feeling helpless and with no where to turn, we designed a bed for Courtney, building the frame ourselves and contracting out the sidewall design to a local awning maker. By the end of the week Courtney had a safe bed, and since her first night in it, we have never had to worry about her getting hurt. Maine's BDS (Department of Behavioral and Developmental Services) came in to take a look at it, paid for the materials required to build the bed and encouraged us to become a State provider so that other parents could keep their children safe. On numerous occasions over many years, they supplied the funding for other families to acquire a Courtney Bed and we supplied the engineering know-how at no cost.

We finally applied for and were awarded a grant from the Maine Technology Institute to further develop a newly designed Courtney Bed and managers at BDS wrote a letter to MTI in support of our seed grant application. Work on the Courtney Bed then led to FDA approval and a patent on the design. In the summer of 2008, Maine's DHHS finally decided to use their Flex-Funding system to provide our bed to Maine families. The need to help other families with Special Needs children compelled us to work to get Maine LD 423 (the Courtney Bed bill) signed into law in 2009 with the hope that other States would follow suit.

There are many children born today with diagnoses such as autism, Angelman's Syndrome, Rhett's, cerebral palsy and developmental disabilities where a safe sleeping environment is needed. The experts state that on average, one in 150 children born today has autism. According to the Thoughtful House organization, an advocacy group for children with autism and their families, the prevalence of children with autism within Maine’s school systems was 1 in 87 for the 2006-2007 year. Minnesota was the only State in the U.S. that had a higher rate that year... 1 in 84.

The majority of States in the U.S., including Maine, have many programs set up to assist children with Special Needs during the day. However, there appears to be limited assistance available for special beds like Courtney’s bed to keep them safe at night. The purpose of this story is to express our concern that there are lots of families who also have a need for a safe sleeping environment, but don't have the means to acquire one. As parents wanting desperately to safe-guard our children, we see this as a tremendous problem that needs to be addressed with an honest dialog about the hard work involved in raising a child with Special Needs, that will eventually lead to some sort of resolution.

A lot of parents have told us they are extremely fearful about what will happen to their children. They have related stories about their children climbing out of bed all hours of the night and wandering outside their home in the dead of winter… they speak about their children climbing into refrigerators and ovens and sticking their fingers into electrical receptacles and light sockets. These parents are sleeping in shifts, just like we did more than 16 years ago before we created the Courtney Bed. Every time we hear another parent relate their story to us, it echoes with the same sounds of fear, helplessness and anger, but also with the hopes and joys of raising a Special Needs child… and one truly has to live this life to fully appreciate it.

Courtney has been using her special sleeping arrangement since the age of three. She doesn’t always sleep, but she is safe and happy and has never refused to get into her bed. Like many other children with autism and developmental disablities, Courtney has sensory issues and she addresses hers by jumping in the bed or pushing up against the sidewalls. With the padding and soft sides of the bed, she is always safe. Courtney truly seems to enjoy being enveloped in the sleeping compartment at night and we've heard from the familes that have our bed that their children do too.

Today, Courtney is still able to live at home with us and has not been placed in an institutional setting because she has her safe place to sleep. She is now 18 years old and still functions between a 18 to 24 month developmental level... however our daughter’s future is incredibly positive. Her life has exceptional possibilities because she has been able to live at home with her parents who love her and is surrounded by a community who are completely vested in her progress, just like we are.

Courtney goes to school with her typically developing peers, rides the school bus with assistance and as parents we're looking forward to her being semi-independent and having a job one day - like so many others her own age. She goes with her friends to the downtown Mini-Golf or watches movies or plays Wii with them at home. She is treated as a typical kid in our typical small town, just as any kid should be. We believe this is so because she has been able to grow up beside her peers and has been able to establish personal bonds so important in every child's life.

The Courtney Bed is not for every child with Special Needs, but is a vital neccesity for those who need it. And we believe that other children like our daughter can have a safer night through the safety and security of the Courtney Bed too, which - as you can understand from our story - has meant much more for our daughter than just a good night’s sleep.