By Jeanne Holverstott, M.S.
Question: It seems like summer can be full of pitfalls for my son with Asperger’s — the structure has gone away, and he’s no longer in contact with classmates. He is content to play on the computer all day, but seems to get moody more easily. Should we treat summer vacation as a long break from school-year stress, or what?
Answer: Summer vacation presents a contradiction: Children with autism spectrum disorders thrive on structure, routine, consistency. Summer vacation throws these principles of ASD parenting and behavior management in flux.
It’s time to search for activities to fill the day that do not involve electronics. You’ll want to set new rules on Wii, DS, Xbox, PS3, computer and television usage. It’s also important to find meaningful opportunities for interaction.
Children with ASDs approach summer with mixed emotions. Many parents probably share this ambivalence. Just like the school year, summer vacation is permeated with ups and downs. So, what do we do with all of that time? Take the following into consideration:
· In seeking consistency and routine, we hope to reduce the unknown and the gray that causes anxiety and opens Pandora’s box. We hope to create a microcosm of predictability in a world of dynamic instability. Change in the ASD world can be bad. Yet, how helpful and how realistic is our static world? Perhaps the static world we strive for unwittingly weakens the coping skills, frustration tolerance, adaptability and resiliency that undergirds functioning in a dynamic world. Summer could be viewed as a litmus test for how our children with ASD react to change that comes yearly.
· That being said, I’m not encouraging schedules to be thrown out the door. No, only those game systems. Again, I kid. Make money in this recession and sell them at Game Stop. Schedules are helpful, but overbooking your kids with camps, lessons, and trips might also not be the solution.
· To help promote a healthy schedule that allows for family time and for time working on those interaction skills, consider picking one or two activities in which you can involve yourself as a parent in some capacity. If your child joins a social skills group, exchange numbers with the other family members and have the kids over on the weekend. If you join a “team,” consider recording the interactions (which many other parents do!) so that you can review your child’s interactions with him or her and compare them to other teammates. If you hear the ice cream truck, make it a teachable moment: Walk with your child to buy that bombpop and shape what develops. In the end, paying for a camp, a class, a lesson is not always necessary. Taking the time to set up meaningful interactions (such as play dates) can provide the same benefit.
· As for those electronics I suggested you sell, they are a necessary evil as a stress reliever, entertainment and an escape. You can put constraints on game play – the length of time and the time of day – but don’t necessarily follow my father’s adage: The sun is out, you should be too. Video games might prove a nice break midday when the heat is at its worst or after an exciting morning.
There is a quote you might appreciate at this time: “The longer the summer vacation, the harder the fall.”
Jeanne Holverstott is an autism spectrum specialist who practices at the Responsive Centers in Overland Park. To ask Jeanne a question about autism, send e-mail to editor@spectrumconnection.net, and put “Question” in the subject line.
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By Kate Duffy
A while back, Toni, the SpectrumConnection editor, asked me to write about how far parents should go to help their teens on the spectrum land a job. Since then, several of our Hot Topics parents have shared their kids’ job search stories with me, and I realized there was no easy answer to her question. For the most part, though, their stories revolved around the kids’ inability to accurately read situations, to remember instructions and to multitask to make a deadline. Looking at that list, it sounds like business as usual on the job for most of us — which is why it is so very important that our kids start learning about the world of work as soon as they can.
That’s why the short answer to Toni’s question is this: do what you need to do.
And don’t do it alone.
Team up with the people in your life to introduce your teen to the world of work. When you get burned out – and you will – you’ll have reinforcements to soldier on to do the hard work of teaching your kid that he has to work and that not everyone is as fascinated with Pokemon, fighter planes, railroad time schedules as he is. You want your teen to join the outside world in a safe, organized manner, so bring in those folks you think would be good role models and champions for your teen.
How involved should you and your team become with your kid’s job search? There is no one right answer, but remember that our kids are generally younger than their chronological age, so that a 16 year old on the spectrum is more like an 11 or 12 year old emotionally.
The end goal is for your teen to get some work experience and to be out in the world, so he understands more about the way the world operates. Given that, it’s not as important how your teen gets a job, just that he has one.
For many, the first job is sacking groceries. So you definitely want to know your neighborhood grocery store manager. You’ll want to talk to the manager before your teen does, letting him or her know about your teen’s strengths and problems. In addition, you’ll want to let the manager know something about autism, especially how prevalent it is, how it affects families throughout the community. By hiring your teen, tell the manager, the store is helping the autism community, which is loyal to supportive businesses.
Do you need to let your teen know about all your behind-the-scene maneuvering? No, you don’t, and it’s better if you don’t. Each kid is different, and so you have to tailor the approach to the kid. For instance, both of my sons are on the spectrum, but they are very different from each other temperamentally. With my oldest son, Nick, who has a lot of anxiety, I frequently have had to go around his back to get him to try new things. That’s how he started playing chess, which he loves, and is a skill he has made money from for a number of years.
Playing chess on a team and then being the team’s assistant coach for three years was a great experience for Nick. Not only was his chess coach a wonderful mentor for him, he also taught Nick how to be a leader and supervisor. For three years, til he got a paying job as an assistant chess coach, Nick worked with Mr. Cooper and learned the important workplace skills of showing up on time, conversing politely even when you don’t feel like it, and managing others – in this case, kindergartners to 8th graders, not a particularly easy workforce.
When he was 14, he also worked for my friend Necia, building her small business a data base of clients and contacts. Three afternoons a week that summer, he walked to her home-based business a half mile away and got to work. What he didn’t know, though, was that I had asked Necia to let him work for her because I knew she would be a good mentor for him, that he would learn about the world in a safe, organized way with her.
Don’t feel badly about intervening in your teen’s vocational life. There is a lot of competition for jobs right now, and our kids need to be part of a team – even if they don’t think they do. Sign them up for Vocational Rehabilitation services too because the VR counselors will then be a part of your team, which gives you a bit of a breather. Remember, the type of skills it takes to get a job do not come naturally to our teens. That’s why the unemployment and underemployment rate for people on the spectrum is about 92 percent.
So get your team together and remember you are not alone. There are lots of us out there doing behind the scenes coaching with our kids. Just keep the end goal in mind and plug away.
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Toni, Toni, Toni…
SINCE YOU INSIST ON PUTTING THIS MESSAGE OUT I WILL MAKE AN ATTEMPT TO EXPLAIN THE SITUATION IN THIS EMAIL.
THE ROYALS CHARITIES HAVE CHOSEN THE ALLIANCE TO RECEIVE FUNDS FROM THEIR 5k RUN (WHICH THIS YEAR WILL INCLUDE A WALK, THE RESOURCE FAIR, FUN ACTIVITIES FOR KIDS, ETC. AS WE HAVE ALWAYS HAD IN PAST. THE ALLIANCE BOARD MEMBERS DID NOT BELIEVE IT WOULD BE APPROPRIATE TO HOLD OUR USUAL WALK IN APRIL AND THEN BE THE RECIPIENT OF FUNDS FROM A SECOND WALK ON SEPT. 4 AT KAUFMAN STADIUM. OUR MEMBERS AND VOLUNTEERS ASSIST THE ROYALS IN THIS EVENT. YOU MENTION IN AN EMAIL THAT PERHAPS SOMEONE ELSE CAN ORGANIZE A WALK IN APRIL. WOW! YES, KANSAS CITY CAN SUPPORT TWO WALKS, BOTH OF WHICH ARE AWESOME. CAN THE KC METRO SUPPORT THREE WALKS, FOUR WALKS? DON’T KNOW. I DOUBT IT. ARE YOU GOING TO TRY? THE ROYALS WILL HAVE THE BROCHURES AND WEBSITE READY ON APRIL 1 FOR INDIVIDUALS TO BEGIN SIGNING UP AND RAISING MONIES. WE WILL ONCE AGAIN HAVE THE COMPETITION FOR THE AREA SCHOOL DISTRICTS, ETC. MORE “LEGITIMATE” INFORMATION TO FOLLOW.
Thanks for the update, Robin! I did leave a voicemail with the Autism Alliance on Thursday, explaining that I’d heard that the April walk would be canceled, and I asked the director to call me but she didn’t. Given that Autism Awareness month is now less than four weeks away, and the KC community — both families and vendors — had come to expect the walk, I thought it important to let them know it wouldn’t be taking place. I explained this all in the e-mail I sent a day later. I do not expect another group to organize a walk, but, yes, there may still be opportunity for an awareness event that brings vendors and families together in April — when we have the public/media attention thanks to Autism Awareness Month. Of course, you and I both know as parents of children on the spectrum that every month is Autism Awareness Month.
As someone who walked in all three events last year, I can tell you that the walks sponsored by Autism Speaks and Autism Alliance were both ROTTEN weather days, but had vendors and booths providing both information and ideas to help families with autistic children which I’m sure brightened the day for many people. (As an example my wife and I became aware of a special needs summer camp which my son ended up attending, doing wonders for him. The money raised is important, but the opportunities to see what is available for families in the autism community is just as important.(Props to this website for doing the same.)
Compare that aspect of those walks to the attitude of the Royal Charities people (as reported last year on this site by Toni) and one has to wonder if to those involved in the 5K walk last year cared as much about helping autistic children as they did about wanting it known they were sponsoring the event. Hopefully someone from Autism Alliance will speak to them about their ban on wagons and strollers, something you would never see in an event sponsored by any group who really were concerned about families with special needs children.
Perhaps consideration can be made to hold the next Autism Walk indoors to avoid the continued nasty weather we experience in April. North Kansas City Community Center has a large gym and an elevated walking track around the perimeter of the gym. They are community minded and may be interested in hosting the event. Just a thought.
I guess we will see if another group can pull off an autism walk on short notice. A group of Longview Community College students is organizing a one-mile event to be held on the school’s track to raise money for the Sherwood Center on Saturday, April 10. Best of luck to them!