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Pure Friendship for Individuals with Special Needs
Karen Wang
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How to get through 82 Days of Summer Vacation

82 days of summer vacation......

yeah, I counted. For my autistic son, that means
82 days of stimming.
82 days of wearing only long-sleeve shirts no matter how hot the weather is.
82 days of hysterical laughter turning into hysterical crying.
82 days of picking on his little brother.

We have

No summer services from the school district.
No family members to help within 250 miles.
No fancy trips to break up the summer.
No respite care.
It’s not going to be easy for anyone in my family.
So the summer plan is all on me. If there’s one thing I know how to do well, it’s to find something positive in a difficult situation.

Part 1: Fun With Sensory Integration

I already promised my kids that we’ll do one fun activity for each day of vacation. Mondays will be beach days  and Tuesdays will be library days . We’ve got a zoo pass, a science museum pass and our Friendship Circle membership. Each child has a list of his favorite local places to visit. But there’s more to summer than going places. I’ve got 2 large containers of February’s snow in the freezer, and a gallon of bubble soap in the garage. The kids want to try ice-bowling like Curious George, so we’re going to make ice blocks in different shapes and roll them down the sidewalk. I expect it will end in a frenzy of ice-smashing with toy hammers. When I look at my home through the lens of sensory integration, there are plenty of opportunities for inexpensive summer fun: 1. Puddle-stomping. Put those rain boots to good use. 2. Cartwheels and skin-the-cat: we’ve been working on these for over 5 years. You may need a second adult to help “motor” the child through the movements. We have more success on soft grass outdoors, with about 50% success for skin-the-cat and something that looks almost like a cartwheel. 3. Two parts corn starch + 1 part water = slime (You will have to mix it by hand.) 4. Shaving cream is an excellent distraction for children who are frightened of summer thunderstorms. We close the bathroom door, clear off the counter, and then go crazy with the shaving cream. When the cans are empty, we wipe everything down with towels and the kids go straight into the shower. We end with a clean bathroom and clean, happy kids. 5. Slather shortening onto pine cones, then roll the pine cones in bird seed. It’s an instant biodegradable bird feeder. 6. Make scrambled eggs for breakfast and let your kids pick the spices to season their portions. I never knew that my son was craving paprika and every type of pepper until I tried this. 7. Homemade fudgesicles: in the blender whip together 1 banana, 1 avocado, a quarter cup honey, a quarter cup unsweetened cocoa powder and 2 tablespoons coconut oil or coconut milk, then spoon the pudding into popsicle molds and freeze for 6 hours. For the full sensory experience, let little fingers wipe the excess pudding out of the blender, and don’t forget to lick the spoons clean. 8. Pick up sticks and pine cones on a nature walk, and practice throwing them as far as possible into a pond or stream. 9. Outdoor bubble bath: there’s no reason why bubble bath can’t go in the kiddie pool. I even have a gardening book that recommends small amounts of soap for aerating soil and repelling insects. 10. Mud bath: mix topsoil and some water in the kiddie pool. After 1 hour in the sun, it will be warm and soft. There’s a good reason why people pay big money for this spa treatment. 11. Messy party: you knew I was leading up to this, didn’t you? Invite all of your friends to bring over their favorite messy items. We always bring bird seed and jello to messy parties, but you may also consider pudding body paint, the old Mentos and Diet Coke trick, flour sprinkled on the driveway for little trucks to make tracks -- the possibilities are endless. Clean-up is easier if the mess is kept outdoors and compostable. Remember that the key to success in sensory integration is parental involvement. The rule in my house is that the supervising parent must be at least as dirty and sweaty as the children.

Part 2: Work

Preventing regression requires constant review and never-ending work. My son keeps a summer diary, and since he responds well to simple written instructions, I wrote a daily checklist on the first page of his diary. (Other children may do better with a picture-based checklist.) The checklist gives him writing guidelines as well as activities that need to be done throughout the day. This helps keep him out of trouble. These were last summer’s writing guidelines: “Every day this summer I will write: 1. the date 2. my favorite activity 3. something I ate that was yummy 4. something nice that someone said.” On Friday, July 16, he wrote, “I had fun when we went to Kensington Beach. I liked having garlic pasta for dinner. Daddy said, ‘You made good choices.’” This was his activity/chore checklist: “Every day this summer, I will: 1. do one page of homeschool work 2. have story time with Mom 3. have math time with Dad 4. help my family with my words and behavior 5. put away 10 books or 10 toys 6. put away clean dishes and load the dishwasher with dirty dishes” As part of their summer homeschool work, I also try to teach my children basic rules of personal safety. I have taught my older son how to write out his complete address, phone number and names of his parents. I’m still trying to teach my children what an emergency is and how to call 911. This summer we will also do fire safety at home. It may seem cruel to heap all this work on my children during their vacation, but the point is to include them in all areas of family life, and this does not come naturally to my older son -- he needs engagement and reinforcement. The funny part was that he often wanted to do more than what was on his checklist: he did the laundry without being asked and he helped with grocery shopping and meal preparation. He wanted to be included in everything!

Part 3: Teaching Episodic Memory

In his book The Developing Mind, Dr. Daniel Siegel defines episodic memory as “the memory of self across time.” It is the feeling of remembering an occasion, not just knowing about the occasion. It is the ability to make predictions about future outcomes based on past personal experience. It is the integration of cognitive, emotional and social aspects of past events. This “mental time travel” is something that most people do instinctively beginning around age 3, but it is notably underdeveloped in many individuals with autism or other neurological conditions. People who are delayed in the growth of episodic memory -- like my son -- may suffer severe anxiety because they are unable to use their past history to form ideas about future events. Living only in the present with no past and no future may be a spiritual ideal in some cultures, but the reality is quite harsh. It’s as if everything is happening for the first time, and there’s no way to know what could happen next. How can someone teach another person the feeling of remembering past experiences? Is it even possible? Yes, in fact, it’s the most ambitious part of my summer plan. All through our fun and work, I have my little camera. My kids dislike being photographed, so I don’t ask them to pose -- I quietly take candid pictures of the backs of their heads. Sometimes I get 30 or 60 seconds of video, too. I attempt to capture the most powerful emotional moments for better or for worse, including temper tantrums, panic attacks and general misbehavior. I choose one or a few photos from each day of vacation to highlight the most memorable events and, more importantly, the human relationships being built. We review the photos and short movies at home at the end of a long summer day, and then add the daily photos with captions to a book. As the summer progresses, I can see my son’s empathy growing. My two boys become closer as they learn simple co-existence. At some point, a joyful spark lights up inside. That’s what summer is all about. [gallery link="file" order="DESC"]              

WRITTEN ON December 29, 2013 BY:

Karen Wang

Karen Wang is a Friendship Circle parent. You may have seen her sneaking into the volunteer lounge for ice cream or being pushed into the cheese pit by laughing children. She is a contributing author to the anthology "My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities"