This morning I woke, checked my email and went on to Facebook. I do this every morning as part of my routine but this morning someone in the Apraxia-Kids group referenced a poem called “Welcome To Holland.” How have I never heard or seen this beautifully stated poem before? I love this – thank you Emily Perl Kingsley for putting into words what I feel.

You may have already seen this but I figured it was worth it to share on the off-chance that you hadn’t seen it either. If you have, read it again and give yourself some props for all of the awesome things that you do for your child. If you are a caregiver, teacher, therapist, know that this is what we are feeling and going through and that you help to make a huge difference for us and our children. We know they are not always easy (who is 24/7?) but they are our babies (no matter what age they are) and we love them more than anything.

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.

I love this!! There are times when I read about all of the things that typically developing children in Italy are doing and sometimes I feel a twinge of “Oh, I wonder what that’s like?” but then I remember that everyone’s normal is different and while things may appear perfect on the surface, everyone has their own struggles.

My life with an autistic child and anxious, toothless dog pretty much means lots of deep breaths, soothing music and laughing at the ridiculous-ness of what goes on in my Holland sometimes (My dear sister frequently tells me that she thinks I am being “punked” because of the things that crop up- kind of like a never ending game of “Whack-A-Mole”- can you relate? 🙂 ). My life is full of twists and turns that help to keep me growing and also makes things quite interesting. My Holland is never boring and I wouldn’t want to be anywhere else! It is from the most challenging experiences and times that I have learned the most about who I am and who I was meant to be in this world. 

I am grateful because I see and appreciate the pure, innocent joy in my 8-year old son’s face when he sees a really awesome ceiling fan or the smirk of his smile when he finally “gets” something like the tooth fairy and know that he is the child I was always meant to have. He is the most fabulous Andrew that I know and I love him more than anything.  

Engage, Encourage and Empower!

I get a lot of questions about storing all of the materials that I have. One thing that is helpful for me is to keep things contained in clear packages so I can see what is inside. Easy to spot, easy to grab, easy to put away! Love it! I also like to use things that I already have or things that sort of “appear” to me and as I purchased some new briefs for my son, I noticed that this is exactly the kind of package that I have reused many times for storage.

This kind of package is perfect for holding items like markers, Do A Dot markers, straws, math cubes, stamps, yarn, stickers, calendar cutouts, index cards and frequently used directions (ex. Make the same. What comes next? Crawl and match.).

Engage, Encourage and Empower!

As you all know, this past weekend was Mother’s Day and my husband was on call which left me with a good deal of free, non-scheduled time at home with Andrew Saturday and Sunday. I figured I would give myself a Mother’s Day gift of doing something I had been putting off for a long time – decluttering drawers, cupboards and closets that I’m always too busy to go through.

I know what some of you are probably thinking – why not gift yourself a manicure or pedicure? But to be totally honest, these days I am working to make my home and my life more peaceful so I can be a more peaceful parent and not being able to find paperwork because it’s not where it belongs does not leave me feeling very peaceful and is a huge waste of my time, which could be spent hanging out with my family! Right now, the gift of time is more valuable to me than nice looking finger nails. (Now you’ll all be checking out my finger nails in future post pictures 🙂 !)

These areas were not only catch all spaces for things I didn’t want to deal with at the time, cluttering my home, but they also turned out to be storing places for emotional mind clutter. I went through these spaces, deciding to only keep things that I loved or needed to file and would donate or pitch the stuff I did not love.

I made this as pleasant as I could by watching some favorite shows on my laptop and was moving right along when I was ready to move a pile of things related to Andrew and My Obstacle Course into my office. As I picked up the pile, I thought about some of the notebooks and binders that I was moving. These particular notebooks and binders contained every daily note written by his teachers for the past 4 years. Keep in mind, these were not sweet journals written by my dear child. They were notes about his behavior, his good days and his bad days. It was as though they contained all of the emotions I felt during those good and bad days (kind of like from a Harry Potter movie!). Did I want these, need these or love these? No! In fact they were seriously weighing me down emotionally.

I thought for a moment about why I had been keeping them and what I was planning on doing with them, I realized that I was keeping them so I could look back and prove how far he had come. It hit me like a ton of bricks when I realized that I can say that right now without needing to refer back to a note from October 5th, 2009. I also know that nobody in their right mind was going to sit with me and look at these. I can’t even get my husband to look at photo albums! I took these binders and threw them in the trash knowing that whatever I thought I needed them for, I already had it. I can look any one of you in the eye and tell you without proving it with a note that in fact he has come so far!

I share this personal experience in case there is anyone else out there who is holding onto something so they can also say someday, “Look how far we have come!” (I can’t be the only one, can I?) Trust me, it feels really good to get rid of things you don’t need, especially when it weighs you down emotionally. If your  journey has been anything like mine, we have all come so far – as parents, caregivers, and most especially with our children. Everyone’s “far” is as different as everyone’s “normal” so embrace your “far” with all of the love and gratitude that you deserve. Thank you for allowing me to share!

Engage, Encourage and Empower!

My last year of teaching, I had the blessing of having a child who was on the autism spectrum in my home room. At the time, I knew very little about autism but he taught me so much and I learned quite a bit that year that would later help me with Andrew.

This child was high-functioning, verbal and although he required very little one on one assistance, he would sometimes encounter challenging situations in unstructured settings like recess or PE. When this would happen, the teacher involved would usually come to me frustrated over the behaviors exhibited but I would get very few details leading up to the incidents. They had a whole class of students and couldn’t spend all of their time focused on this one child (I totally get that) but since the student was mine and was unable to tell me everything that had happened, I had to find out what was going on.

My instincts and experience with children told me that it probably wasn’t all this child’s fault and that there had to be more to the stories. I began sitting with that student at the computer (something they liked to do) and was amazed at what I would discover. It was so informative and helpful. Using the computer as an interpreter made all the difference in the world. Part of the reason it worked was because the computer screen doesn’t have facial expressions or social rules to figure out. I would type statements or questions and he would respond either by typing or speaking for me to type. Details would come out and quite often he was provoked by another student who was able to escape getting in trouble because they were more socially savvy. When we finished doing this, we could print it out and present it to the other teacher to empower the child with his version of the events. It gave him a voice and a means to stand up for himself. This did not excuse him of any behaviors that hurt or bothered other students but it gave me the chance to work on social stories for how to deal with this in the future. This also allowed me to work with the other students who were involved, let them know I knew what had happened and that they would also be held accountable for their actions or words.

This is just something that I was thinking about today and thought that it might be helpful to share.

Engage, Encourage and Empower!