By Tim Paauw
The first full week of April is always our Spring Break in Michigan. What does that look like for someone with autism and their family?
Let me share a few details and a brief introduction because “When you have met one person with autism… you have met one person with autism.” This is our story. It may be quite different from others with autism.
Our son Nolan is six years old and was diagnosed with Autism Spectrum Disorder (ASD) on October 31, 2013. I used to call him “non-verbal autistic” because he could not communicate using words. To this day, we cannot have a conversation with him but he continues to make gains. Based on his speech therapist’s description of progress I now call Nolan “noun-verbal autistic.”
April is known as “Autism Awareness Month” and yesterday is celebrated globally as “Light It Up Blue for Autism Awareness” (wearing blue colors and famous landmarks adding blue floodlights to shine a light on behalf of awareness).
As a dad of a son on the autism spectrum, this month is quite a blessing. I am grateful for the month of April because 1 in 68 people are somewhere on the Autism Spectrum yet we have no clue what causes this and there is no cure–we need continued advocacy and awareness.
Okay, now back to my original question…
Where we live this week is a statewide Spring Break from school. Many load their vehicles or hop on an airplane and go somewhere warm. In our family, this week is a bit more unique and complex than the rest. We too enjoy every minute of it and wouldn’t trade it for the world, it just happens differently than for most.
Our son Nolan does not do well overnight in locations other than his bedroom. We have traveled in the past and hotel rooms or guest bedrooms in most locations feel too foreign to him (people on the autism spectrum often prefer routine and can get overwhelmed with new settings–a simple alarm clock location or the bed being along the wrong wall can cause anxiety to spike). We have seen Nolan pace around a bedroom literally all night in tears covering his ears to reduce his senses and repeating the phrase, “It’s okay, its okay, its okay.”
Nolan is a kid who is very sensitive with his hearing/ears especially. He can’t stand when someone touches his ears and usually won’t wear a hat in the winter because it agitates him. We took him and his twin sister to California when they were two years old to visit my grandparents. The cabin pressure changes in the airplane were extremely frustrating to him and caused stimulation overload and tantrums while he tried to regulate his thoughts again.
We have made the decision as a family that for now we will “divide and conquer” so that the best scenario is possible for all. Again, we are just one autistic family and each is unique. We are not advocating that everyone with ASD should remain home. In fact, we still make a trip to a cabin once each year not far from our home where we have found for some reason it is the only place Nolan will accept as “home away from home.” This becomes our family vacation for one week each year.
For now, it is best to help Nolan enjoy Spring Break by providing him the safety and comfort of his own bedroom at night and some familiarity of our town for the week, a “staycation” for him while we take him to do things that he loves (jump on the trampoline in our backyard, visit the botanical gardens in our hometown, walk a trail in the woods, visit a local playground, etc). We have a younger son who is now 2 and 1/2 years old who remains at home for the Spring Break until he is a bit older and can appreciate traveling.
Last year, my wife Laura enjoyed the time home with both boys while I took our daughter to California to spend time with my grandma, aunts and uncles, and to show her the beauty of the redwoods, San Francisco, and many other great California places.
This year for the Spring Break week, I am at home with my boys and thoroughly enjoying the quality time! Laura and our daughter headed to California to see our grandma and other relatives and to explore a bit more.
The natural reaction for some when they hear this, “Oh, that is sad that you can’t all be together.” Truth be told, we even feel this way once in a while until the actual experiences take place. Now that the week has arrived and we are in the moment it is so much easier to see the “why” behind our decision. We get to live it out and celebrate it!
Nolan will have a week he won’t forget where he gets to do all of the things he loves. Evan, our younger son, gets to have his first “sleepover” outside of his crib with Nolan this week and adores his big brother. For me, I get uninterrupted time with 2 boys that own my heart. I don’t get enough of that so this is a gift. Our daughter, Kathryn, gets to see some unique places and have a week where mom focuses only on her for a bit and Laura gets to bond with Kathryn and also see family that we love and don’t get to visit enough.
If you’re reading this blog-post my guess is that you either hoped to build on your own awareness and understanding of ASD or you have a loved one (perhaps yourself) who has been diagnosed on the spectrum and you are like me, reading various articles to empathize and appreciate others within what I’d call “our autism family”. In either case, I hope it met your heart and provided what you hoped for.
It gives me chills to think of all the people and places taking part in the “Light It Up Blue for Autism Awareness”:
- The U.S. White House,
- The Empire State Building,
- The Rockefeller Center,
- Canada’s CN Tower,
- The Blue Man Group,
- Niagra Falls,
- The Macau Tower in China,
- Fenway Park,
- The Golden State Warriors,
- The New England Patriots Stadium,
- Christ the Redeemer Landmark in Rio De Janeiro,
- The Ancient City of Petra,
- The Home Depot,
- And many more!
To all of these places, people, and each of you reading this… thank you for your support and your help in providing resources and encouragement for families like ours on a unique “Different, not Less & very Blessed” autism journey!