There Is No Such Thing As A Stress Free Life With A Special Needs Kid
“There is no such thing as a stress free life with a special needs kid”
When Caily was born so many well meaning people sent us an essay written by Emily Perl Kingsley a parent of a special needs child. The essay is about planning a trip to one place and arriving at a different place but equally special and beautiful. Here is the essay:
WELCOME TO HOLLAND
by Emily Perl Kingsley
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.
Four years later, I agree with the analogy except the essay but with some qualifications. The message should have noted Italy would be 5 star hotels where everything is done for you and Holland is backpacking. Holland is a great experience but very HARD work where you have to plan each step, lug your bags, stand in lines, miss the luxury. Being a parent of special needs kid is HARD WORK.
On Monday we went to presentation by a consultant to help parents navigate the dreaded. “Turning-5-process”. Yet again we are transition to yet another “new system” in the early intervention process with a new set of rules. Again we feel overwhelmed and the task seems so daunting. And again we learn that there is one system that the government design and another one that highly motivated parents create.
It is in fact scary to think how different Caily’s world would look if we were not articulate, educated and with financial means to fight the system. Let me give you a preview.
When a special needs child turns five he or she transitions from the “Committee of Pre-School Education” (CPSE) to the “Committee on School Education” (CSE) that determines your kids education placement and what services she or she gets. Both Committees are administered by the Department of Education and the system is run by educators whose goal it is to keep costs as low as possible. Under the Individual with Disabilities Education Act, your child is entitled to a “Free and Appropriate Education” (FAPE) but parents are of course seeking a “Free and Best Education” for their child. The sad part is only those parents with time, money, education and a huge amount of will and determination can bridge that gap.
I came out understanding how skewed the system is. Scary examples include an administrator determining FAPE for a wheel- chair bound kid was at a school with no elevators. Many systems have faults. What disturbs me is there is a way round the system but it includes thousands of dollars on legal fees, a $5,000 neuro-psychological evaluation to support your case, an incredible amount of time and understanding that a parent’s advocacy can impact the system. What if you are like the Mexican mom who I met at the same meeting whose child is not in the best place but she cannot fight the system for lack of funds, lack of time, limited English, fear of taking on authority and so many other reasons.
We will advocate the best education for Caily is in a private Jewish day school where the education is good and she can have religious instruction. The law says your child is entitles to “the least restrictive education that allows for inclusion in community”. I truly believe that in our situation where we are a practicing Orthodox Jews, providing a Jewish environment, learning about Jewish festivals, knowing what her siblings know is better inclusion in community than if Caily attended public school and missed out on all this. How is it inclusion if she is the only kid who cannot go to the MacDonald’s birthday party on a Saturday? How is it inclusion when all the kids dress up for Halloween on Oct 31st and she is not experiencing Purim in March?
Caily has parents who will stop at nothing to get what is best for her. She is also blessed with admission to a Jewish school that embraces her and is willing to work with her and even so, unless things change, we will have to sue the Department of Education every year until she turns 18 in order to get the best education for her.
Holland may be a wonderful place to visit – but it’s no vacation……..
Originally published: November 11, 2013
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