Welcome to Holland

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy a new guidebook. 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, 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."


The pain of that will never, ever, go away, because the loss of that dream is a 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.

Written by Emily Perl Kingsley

30%

I expected a lot when I had my fist child. I expected the pain of labor, and the joy of his first smile. I wasn't shocked by how hard it was on me the first time he got a major boo-boo, or by how frustrated I get by disobedience. There aren't many huge shockers with kids, after all you were one.

Also you know how to be a parent before you even come close to becoming one. Just like knowing how to drive before you ever get behind the wheel. You have seen it done for years, and when you finally get the keys in your hands most things come second nature. Sure, there are some things you pick up along the way, how to change a tire or the best place to get gas, but when all is said and done you really have been driving way longer then you have had a license, just as a passenger.

It is all about expectations, acceptance, and adapting

Let me give you the deal with Daniel. My other posts have been about my emotions, thoughts, personal fyi's if you will, about my son having Autism. Well, here is the meat and bones about it as I see and understand it.

Daniel was diagnoses 1 month before his 2nd birthday. By the time you are 3, your brain is basically set on how its going to work. Since we figured out whats going on with Daniel early we have the next year to try and change the way his brain processes information. We have this time to work with him, teach him, and change the way we 'play' to hopefully lesson the symptoms. When he is 3 years old, we will go back to the Developmental Center where he will be re-tested. There is a 30% chance the diagnosis will be dropped.

I used to see that as a 70% chance my son will be....wrong. I heard it whispered in my ear all the time.

That was when I was angry, and that was when I was hurting.

The first thing we did to 'fight back' was make drastic changes to Daniels diet. Autism, to get really basic here, starts in the stomach. Ideally we clean up Daniels diet, his stomaching isn't working so hard to clean out toxins, and his brain can function better. We did a blood food allergy test, and eliminated basically everything. My sons diet is fruit, veggies, meat, eggs, corn and rice. Nothing pre packaged, and nothing that I don't make myself.

4 weeks later.

I have spent the last month accepting. I accepted 70%. I accepted this as my life. I accepted that Daniel will always be a fight, and I would never hear him say the word Momma. 70%.

I did not expect to see changes in Daniel and I didn't believe it when I started to see them. I didn't want to get my hopes up. 70% ... But they were there. They are still there. Every day I am seeing progress. Small, little things. I point to my nose, and he points to his. The fact that I can hold his attention and eye contact long enough for him to mimic me brings me to my knees in grateful prayer. Over and over again small, little things, happen that make my heart burst with joy. Pointing to an airplane and looking at me to share in the joy of seeing the aircraft. Running to my bedroom door when Nora crys after her nap. I didn't want to believe it, but I couldn't ignore it... still though, a 70% chance next year I would end up broken and devastated again.

Then there was one other change, one moment that changed my heart forever.

If you were there you wouldn't have any idea what happened. It was only clear to Taylor and I, but in his own way, like our secret language, Daniel told me that he loved me.

Out of everything I know about parenting, nothing prepared me for the rush of emotions I felt from hearing something I wished for so badly, something that I thought would never happen. I looked at Taylor, hesitated slightly holding back tears, and choked out the words for the first time

"We are going to be the 30%, aren't we?"

He looked at Daniel as if in hopeful thought, looked back at me, smiled and gave a confident nod.

"We are."

The Waiting Game

We have a new book to read- add it to the pile, right? This one is different. It is from the website AutismSpeaks.org, a wonderful program that sent me a book called The 100 Day Kit. As you can tell it is a guide to the first 100 days after diagnosis. I wont get into much detail, you can get it yourself if you are truly interested, but I do feel some parts are notable in this stage for me.

They openly discuss the many stages of grief for the 'First Step'. Just reading through that part almost sent me back to bed in tears thinking of the physical pain I still feel daily. I remembered throwing a library book across the room with so much anger at the words highly functioning. I still watch Daniel and think to myself  'Maybe we are all overreacting, he seems so fine'. So yes, I have to agree that grieving is The First Step.

Okay, so the hard part is over, right? Moving on to The Next Step. In all the books, article, pamphlets, and phone calls I have suffered through this is where I 'should be' in this process. Paperwork, setting up evaluations, becoming familiar with programs and facilities in my area, and knowing my insurance coverage like the back of my hand. You can go right ahead and just check all those off on the to do list. Like I said earlier, Mrs. Organization.

So now what?

Now we wait. We wait for services to start. Wait for paperwork to 'go through', wait for therapists to be assigned and openings in schedules for Daniel to get in. Wait, wait, wait. I hated waiting as a kid. It was always easier on adults to wait, or so I thought. Now I realize waiting sucks at any age. In the meantime we will do what we can at home and continue to grow stronger as a family.