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Farewell to a friend

By Toni Lapp
Last spring about this time was one of the most difficult periods I’d experienced as a parent of a child on the spectrum. It was my son’s freshman year at high school, and the transition from middle school had been difficult. I won’t go into detail, but suffice to say that there had been disciplinary issues and we were grappling with the appropriate measures to take with a child for whom normal rewards and punishments didn’t seem to apply.

There were times when I hated the circumstances I found myself in, but, even worse, I couldn’t commiserate with others who I felt would judge me as an ineffective parent for not being in better control.

And then I met another mother at my workplace who also had a son with Asperger’s syndrome.

I was at ease with Lisa right away, and felt like I could tell her anything. Because her son was two years older, she had been through it already – from meltdowns, to medications, to taunting at school. It was like we finished each other’s sentences the first time we chatted.

I remember her showing me pictures of her son, and I bursted out laughing, scrambling to produce my pocketbook pictures: both boys had the same Aspergian half-smile.

For the first time in a long time, I felt like I could talk about everything — the good, the bad, the ugly — without fear of being judged.

We talked about the difficulties of getting an education from a school system that can seem indifferent. She told me how she maneuvered to get a paraprofessional placed for her son. She warned me about being complacent with school officials: “I’m sure they (school district officials) cringe when they see me, because I’m a mama lioness and I protect my son’s rights fiercely,” she boasted in an e-mail.

Despite her seemingly positive outlook, she acknowledged what many of us know, however: That it’s difficult raising a child who falls outside the norm. She’d struggled with anxiety, she confided. She said she was glad to know there was someone she could relate to during stressful times, and I felt the same way.

So fast forward a year. My son’s sophomore year had been going much more smoothly. I hadn’t talked to Lisa as much. Her son, a senior, had been doing well and was perhaps even on his way to earning a scholarship. Maybe we didn’t talk as much because we didn’t feel the need to commiserate.

And then our employer, like many others these days, had layoffs and Lisa was let go recently.

I didn’t know what she had been going through when we received word at work this week that Lisa had died. As with deaths of people that seem to be before their time, I hate to even ask the specifics. I do know that I feel regret that I didn’t take an opportunity to reach out to her when I still had the chance.

If someone would have told me a year ago that I’d be attending Lisa’s funeral, I wouldn’t have believed it, yet that’s what I’ll be doing tomorrow. One of her family’s requests was to make donations for autism research in lieu of flowers. I can’t think of anything more appropriate.

I feel like I’ve learned a lot from Lisa, whether she meant to teach me or not. The last, final lesson leaves me incredibly sad.

2 Responses to “Farewell to a friend”

  1. Kate Duffy says:

    I am so sorry, Toni. What a hole that friendship must leave. I’ve been thinking of that a lot too because one of my favorite students died just about 2 weeks ago, a 40-something guy who had been rebuilding his life after a lot of hard luck. I look for him every time I go into the classroom. I bet you may still be looking for Lisa too. Take care and thanks for reminding us again of what is important.

  2. Brian McTavish says:

    Thanks to this piece, your friend is still teaching.

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The Summer Break: A Catch-22?

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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DEVELOPING TALENTS

Intervene, Intervene, Intervene

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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