By JC Mitchell
So being a parent of a child with special needs is hard to explain to a parent with a child that is typical (that is physically, neurologically, mentally, typical). I will be the first to admit at times I have no idea how you deal with the demands of a four year old typical child, for my four year old with autism never talks back and never asks for the newest toy. Emily Perl Kingley wrote in 1987 this piece that is shared with parents with children with special needs as well as those trying to understand. It is called “Welcome to Holland,”
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
This is powerful, and I hope eye-opening, and the second to last line is just as important as the last. That is the tension. You can imagine if you did actually end up in the Netherlands and not on the Apennine Peninsula, you would be angry at your travel agent. For me, the closest thing to a travel agent would be God, so I would express my angry to God at times. Yes, I would not want to miss the tulips or the windmills, but I express my frustration about the situation to God.
It is however, not going to Holland that I am angry about any more. I have mourned that and I enjoy the very lovely things of my landscape. The difficulty is everyone that has been to Italy only wants to see the pictures of the windmills, and not hear about the frustration to the travel agent. They want to compare Rembrandt with Michelangelo and not hear how many therapies, extra time, money, tears, prayers, and hard work it took to get a Rembrandt. I have learned Italian (only metaphorically) but none have bothered to learn Dutch, or even Frisian. That is actually where my anger lies even more, because that is why I am reminded of the pain and difficulty of raising a child with special needs, when those with typically developing children think nothing of our adventure in Holland.
A great example of this insensitivity is within the current school district we live in. We had a listening session on Monday night, and one group that admitted to be parents of gifted children stood up and spoke Italian and claimed Holland. That is one step too far. I am angry. They said their children also have special needs and held up a bell curve.[i] They inferred that children with special needs are taking resources from their children and thus claimed Holland: Special Needs. Because I have been forced to speak their language as well as my new Dutch, I realize what they are saying, that their children have special necessities, but to say they have special needs is to steal our language without understanding what we go through.
To cut any more programs and help to children with special needs means a difference between independence and/or reaching full potential for people, while cutting programs for the gifted, means they need to do independent study or create new group situations. Having been a member of the National Honors Society, (teacher made me join, go teachers!) I recall that I and other truly gifted students studied and did projects on our own, or through civic organizations. They all made it to college; and yes, some made bad decisions, but that’s life. My anger is that the superintendent of schools, or anyone else, did not politely tell these people that utilizing another’s label to take resources from them who desperately need it was insensitive and infringing on civil rights. That’s correct--civil rights. The population with various disabilities deserve education and yes it costs more, but trust me, the parents take on a lot of the bill themselves. To me, it is not unlike white families that say the same thing about an immigrant population.
So in my best Italian, I encourage you to read the piece above again, but go forth trying to learn some Dutch.
Jesus tells us the neighbor is the one who shows mercy, the Samaritan, a person considered lowly and not of the neighborhood. The language of the Samaritan was that of mercy and compassion, without boundaries. We need the gifted to be challenged, but more importantly, we need to have compassion for those with Special Needs and at least provide the basic assistance to bring every child up to their potential. We are not quite there yet, even with great teachers, parents, allies, and SPECIAL children.
[i] The bell curve is irrelevant for those with disabilities range on both sides of the curve. I myself was tested for gifted and special education. While gifted programs are simply for a small amount at the top, some of may even require special needs education be it for a physical, learning, mental, or developmental disability. I footnoted this for this is absolutely ironic that the parents of gifted children did not understand this, or they are just very clever. Either way, does not look good.