Neglected in the Netherlands: A Rally Cry from the Special Needs Community
When my daughter was a baby, she was labeled “Failure to Thrive”. Tiny and fragile, she looked just like a porcelain doll. Her special needs aside, she was my easiest baby. Her calm and cooperative nature carried through her toddler years.
It was around this age that I was introduced to the poem “Welcome to Holland”. The poem compares raising a child with disabilities to ending up at the wrong vacation destination. Imagine planning a trip to Italy it suggests, only to find your airplane landed in Holland. Recognizing the beauty in Holland becomes a metaphor for recognizing the beauty in raising a child with disabilities.
I was touched when I first read the poem, back when my daughter’s disabilities were manageable and I still had an optimistic view of my own abilities to care for her. However, as she grew, I began to realize we were most definitely not in Holland.
The experience of being a special needs parent is far more than just an inconvenient change in plans. We didn’t get to take the vacation at all. We’re stuck at work managing a seemingly insurmountable project that was thrown on our desk at the last minute.
There are no windmills or tulips.
I’m spending half my life on hold with the IT department because my computer isn’t cooperating. The printer needs toner, the voicemail is full and my assistant is as unqualified as me.
I watch as other employees put in their eight hours and go home. Meanwhile, I’m working around the clock on this project with no end in sight.
And truthfully, I really don’t want this project to end.
It is a strange dichotomy. This project, and all it entails, has drained me. It has taken a toll on my health and aged me beyond my years. It has, at times, gutted me. Yet, the thought of this project ending is unbearable.
While I understand the sentiment behind the poem, I think it paints a grossly inaccurate picture of special needs parenting. I appreciate the hope it provides to parents new to the journey, yet I worry about the message it sends to those outside our community.
The last thing we need is for the rest of the world to think things are all hunky-dory in Holland. Others need to know our struggle and our pain. They need to know that much of our struggle is due to raising children with disabilities in a world that largely neglects them.
As a special needs parent, far too much of my time is spent fighting for cooperation. And, I don’t mean my daughter’s cooperation. Whether it’s my child’s medical needs, educational needs or social needs, I am constantly pushing people to do the part of their job that they would prefer to ignore.
We have laws in this country regarding the rights of individuals with disabilities, but I find too often people put more effort into circumventing these laws than actually following them. They rely on the fact that many parents are so busy with managing the day-to-day needs of their child that they haven’t much time to put up a good fight.
And, they’re right. As special needs parents, we have to pick our battles more prudently as we have less time and energy than most.
The protections offered by legislation only go so far to help those with disabilities. We have to count on people to follow them. We also have to count on our federal and state governments to properly fund programs for individuals with disabilities, a task they continue to fail. When budgets need cutting, the already underfunded disability programs are often one of the first to take a hit.
Over the years, I have watched as other marginalized groups with far smaller populations, receive support from those beyond their community. Individuals, businesses and governments alike have taken up their battle cries. Laws have been enacted and funding provided at lightning speed.
Yet, the disabled community continues to be neglected. Our rally cries, softer as they rise from deep in the trenches, fall on deaf ears. We have few allies in our fight. Most of our community is tied up with the immediate medical concerns of our loved ones and fighting our own daily battles.
It’s time this world offers support and real solutions to the special needs community. It’s time to stop viewing our experience as an unexpected detour and recognize the impossible workload our families carry.
The current legislation and programs are largely superficial. With too much red-tape for families, too many loopholes for providers and insufficient funding, they offer little relief. It’s time protecting the rights of the disabled community becomes trendy.
Even though I missed out on a trip to Italy, I remain committed to my project as are most special needs parents. The work needn’t be so arduous though. If only we could get the rest of the world to recognize the value of our work.
With a little cooperation from those outside our cubicle, maybe someday we could take our projects and work remotely from Holland.
