There’s a point in the life of most parents of special needs children today that someone sends them, or they come across, the “Welcome to Holland” poem/story, by Emily Perl Kingsley (a sesame street writer, and mother of a Down Syndrome person).  It’s a poignant / twee analogy comparing welcoming a disabled little line to a trip to Holland where you were attempting to go to Italy (see end for the piece).

It often divides SEN parents from those who find it on point, to those who... don’t. And those who flip-flop between. (I don't have a strong view, although if you've come here for thoughts on difference, my recommended reading is Far from the Tree by Andrew Solomon)

I suppose we all have expectations for our children. Hopes and dreams. Great expectations, perhaps.

Then the little person comes along. Has not read any of the manuals. Life is reset.

At some point, I think I would have thought it unlikely I would see S on stage, performing actions somewhat enjoying himself. Shouting out some lines.

Yet, this week, that's what I did see.

There is a line of thought suggesting that grief can not be shared. It is too personal, too unique. Yet, the desire to share grief, the want to connect, the ability to be present for someone - that desire to share grief, that can be shared.

There is no universal play about autism, as an ASD person is too unique. Yet, there are plays about the human condition, and all ASD people are human.

Life swings backwards and forwards, circles back, jumps forward; jigeddy-jag.

I don't think I could have easily forseen S on that stage, the flows of life are too complex. I think that's a reason to be hopeful - the wished for happy endings that Annie Proulx speaks about - and a good thought to be thankful for.   

Sheryl Sandberg on grief and gratitude.   Anoushka on gratitude.   Lessons autism has taught me.

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.