This advice often shows up in autism blogs and in books on autism everywhere: routines and schedules are essential for children with autism!!!!! Many autism parents I know live and die by schedules. I have tried schedules with Beth a few times over the years, but my heart was never in it. The way I see it, inflexibility is a core feature of autism. How is my kid going to become more flexible if I lock her into set routines and schedules? Now, at almost age 6, she is a fairly flexible child who can run errands with me, go out to meals in restaurants, and make it through fairly noisy parties and outings. The more outings I do with Beth, the more I learn about what she likes, what sets her off, what helps her calm down, and how to strike the right balance between challenge and things she likes during an outing.
Although we do not have a strict schedule to our days, we have a general rhythm with the homeschooling lessons and some fixed outings (therapy, play dates, etc). So it was an extreme test of flexibility when we drove 19 hours from our home in the burbs north of Philly to Delray Beach Florida for a 3 week vacation with Beth’s grandparents. It was my husband’s idea to go someplace warm in the winter and his parents made it happen by finding the location, renting the house, following me down there on the drive, and helping me out in ways too numerous to list here. Hubby flew in for a great visit and then helped me drive back home. Since Beth has a passion for watching scenery fly by while listening to music and she loves stopping at hotels with pools, driving that far by car with her wasn’t a big worry and it seemed like a better option than going by plane. My real worry was the uncertainty of Beth’s reaction to obliterating what little routine she had in her life. But Beth surprised us all with how well she did with the trip and I learned some invaluable lessons. The most important of which was that Beth is far more flexible than I ever imagined.
My main message in this post is this. If you have a child with autism and it is very difficult to go on community outings, take vacations, or break the routine in some other way, I urge you to try it and persevere. My advice is to start with very small goals, like picking up 1 item at the store, and work from there. It may take a long time to be able to survive a full shopping trip or have a good vacation(it took us years), but attempting to increase your child’s flexibility is time well spent. You never know unless you try and you may end up here some day…
1. Song Request Success Leads to Language Improvement. Beth has always loved riding in the car and listening to music, but she would occasionally have outbursts. Why? Because she didn’t have enough language to tell me what song she wanted. Right before this trip she started to grab lines from songs and use them to request songs in the car. With the long length of the road trip, she had plenty of time to practice her song requests with the thumb drive full of songs I brought and she was able to say understandable snippets from hundreds of songs by the time the trip was over. She had ZERO outbursts on the way there and back because she could tell me what songs she wanted. As she practiced her song requests, we worked on saying the words clearly. Her clarity continues to improve and she bursts out in song at random times now.
2. Bye-Bye to Old Comfort Items. We lost her beloved sippy cup on the way there and it wasn’t a big deal after all. We also got rid of glycerin based products (like a small amount of edible toothpaste on a toothbrush, which she liked to chew on for comfort). And finally, because she kept requesting baby oatmeal for comfort on the trip (I still fed it to her because she liked it and it had vitamins, so why not), we figured out that it had a laxative effect on her. A double hitter… bye to the old oatmeal comfort item and bye to tummy troubles.
3. Expanding on Beth’s Love of Water.
- Swimming in the Ocean. The water near the shore of Delray Beach is shallow for a long distance out, which turned out to be perfect for Beth. She overcame her fear of the noisy, unpredictable waves and actually swam in the ocean. She was the only kid her age I saw out there without arm floats or a life jacket who was swimming in the ocean and managing the waves. Of course I was busy staying close by to keep her alive so I have no pictures of video of it.
- Playing in Streams of Water. Sure, she did her typical head-dunking thing. But for the first time she enjoyed getting hit by a water gun and welcomed the unpredictable water fountains at Palm Beach Zoo.
- Bumper Boats. Surprisingly she wasn’t afraid of the bumping or the loud motor. She asked to go again when we finished !?
4. New Interests
- Animal Awareness and Love of Birds. We went to a lot of animal parks (e.g., Palm Beach Zoo, Flamingo Gardens, and Lion Country Safari). In general her awareness of animals and ability to name creatures is at a high after this trip. But the real surprise was that she seemed most amused by the birds. Since Beth shows her amusement in subtle ways when we are on outings because she is working hard to process all the sights and sounds, I don’t think I would have noticed her pattern of subtle smiles and more attention to birds unless we took this trip.
- Activities With Unpredictable Movements. It has been a long time coming, but kiddo is finally starting to embrace side to side movement and activities with unpredictable movement of her body. She showed that she is ready for these activities on the trip. Some examples include suspension bridges that move when others are on them (which made her giggle), climbing ropes, and the rolling movement of a camel ride (plus she just thought the camel’s face was darn silly).
- She Learned How to Ride a Bike on Vacation!
5. Lessons Learned
- Sometimes Smaller Venues are Better. Beth did fine at the bigger zoos, but the small Nature Centers that seem to be everywhere in Florida were perfect for her. Each Nature Center usually has a prime focus or attraction, and they are small so they are not overwhelming. An added bonus is that Nature Centers are free (they only suggest a donation). Another great “donation only” small venue was a children’s science museum inside Sugar Sands Park. The larger Children’s Museums are still too much for Beth (we tried one in Miami and it was rough with the echo and noise), but the smaller venue children’s science museum was a score!
- Not Ready for Go-Karts. These things scared the hell out of her. At first I thought it was the motor, but the motor wasn’t that loud and she tolerated the bumper boat motors just fine right after the go-kart attempt. When we got home she did not like sledding either, so my new theory is she doesn’t like riding fast low to the ground right now.
- She Loves Horses, But Needs a Slow Approach. We tried both horse therapy (where people walk along side of her and she is in the saddle solo) and Horse Boy Method (where someone rides with her). Beth clearly loved the horses and always asked to go on them, but she scared easily when the horse started moving. In retrospect, I think the staff took things too quickly for Beth and she needs a much slower approach to horseback riding. I count this as an invaluable lesson learned and we plan on doing horse therapy at home in the future.
- When We Couldn’t Get a Heated Pool at a Hotel (Which Seems to Be Common in the South), We Used Our Y Membership to Get in Free at Any YMCA on the Road. Also good advice…if you need a strip club on the road, stop in a military town.