Welcome to Holland

by Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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.

ACPCG

This organization does some amazing work: The American Child Photographers Charity Guild.

Their work is not specifically purposed for helping children with special needs but what they do is amazing and I just had to post about it. They volunteer their time for families with a child or other family member who is terminally ill and take pictures for the family. They even work in the NICU for a premature babies or wherever that family can and wants to go. I spent almost an hour crying while looking at pictures they had taken. These are photographers that are exceptional. I just wish I known about them years ago when my nephew had cancerous tumor the size my fist in his chest at 3 months old. Against the odds, my nephew recovered and we're celebrating his 2 year remission mark soon. Yet so many stories do not have such happy endings. What a blessing having professional quality pictures with these loved ones must be for these families.

LDS Disabilities Web Site

I just discovered this web site and I LOVE it! It provides information to primary teachers and church leaders who are teaching people with disabilities and it shows how in tune the leaders of the LDS church are with what is going on in the world today in this field. After being a Primary teacher for years myself, I have had student children with Autism, Learning Disabilities and ADD. These kids can at times be real challenge, but through really loving them and having really good lesson plans they not only behave better and learn but enjoy it too. The resources on this site also include helps for the family members of someone with special needs. This site is a great starting point and it has many links you can follow to other very good sites for resources.

You can get to this site via this link.

VIP Special Needs Sports

This program is awesome! I found out about it through a friend of a friend at the end of the soccer season. Caleb (my son) went to the last three games and LOVED IT! For only $15 dollars that's right the total cost for you is only $15 dollars for the entire season. AMAZING!

Sports are a wonderful growth experience for your child who might not otherwise get to play sports in a conducive environment. The program provides a 'buddy' for each child so they can really learn skills of the game without being intimidated.

You also get a jersey and a picture of your child. Caleb really likes the blue soccer socks they issued him. Like I said totally worth it for the price. It is however in Mapelton, UT. For my family that's about a 45 min. drive each way but the experience is really very irreplaceable and we are totally doing it again for basketball season. We have 5 other kids from our neighborhood also going (one is in a wheelchair so really anyone can go). Can't wait for it to start at 10a.m. January 23 and runs through the end of February. Checkout their blog to find out more www.specialneedssports.blogspot.com or call Keri at 801-489-4904.

Disneyland

It's the happiest place on Earth, right? Well at least it is again for my family. Just over six years ago we went to Disneyland as family; at the time I was engaged and being the oldest I still had younger brothers and sisters at ages: 4, 7, 13, and 15. What better way to spend time as a family? That is unless your sister is autistic, just started talking and can't handle crowds (she was the 7 year old).

It was still pretty early in the day, and we had gone on one ride: Pirates of the Caribbean (have to hit that first so the line isn't crazy long). Then we head over to It's a Small World and my sister lost it. There were just too many people and it was too loud. Absolutely the worst environment for her at the time. We were in a different city and country (I'm originally from Canada), and nothing was the same as home. Well after paying for tickets which I'm sure you know are not cheap, my Mom and sister spent the rest of the day in the hotel room with my poor sister in complete melt-down mode.

Fast forward 6 years. Mom is once again ready to try and brave Disneyland. Only this time my sister is now a teenager of 14 that still has problems with crowds, my brother who is 11 had Fetal Alcohol Effect (adopted) and can't keep his hands of off things and people and a grandson (my son) who is also autistic. Are we absolutely insane?

Well it was wonderful! From a friend I learned about the absolutely wonderful Guest Assistant Pass program. These things are an answer to prayers (really!). You go into City Hall just inside the gates and tell them why your child needs special assistance at the park. They don't want to know what your child has been diagnosed with they just want to know how it affects them in the park. For example my sister can't handle the crowds. These passes aren't just for the child, it also includes passage for up to 6 people accompanying them. We got passes for all 3 of our special children so our entire group was covered to travel together if wanted or break up into as many as three groups. So instead of waiting in all the long lines we got to go in the exits or Fastpass lane to ALL the rides. AWESOME!!! We got to ride all the rides we wanted to even thought it was crazy busy (4 hour line for Pirates of the Caribbean at one point).

If only we had know about this 6 years ago. We would have been going much more often. Disneyland I LOVE you again!!!