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In Their Own Words – Doing the Odd Job

July 8, 2010 12 comments

This “In Their Own Words” essay was written by Rose Wade. Rose has two children, including a teenage son with autism. She is a military wife and the founder of The Robin Hood Lego Campaign Advocating Autism Awareness and Lego Therapy.

Summer is here. Officially, as the last day of school for my kids was on Thursday. I know a few moms whose kids have been out for two weeks already. And to think that our school district didn’t even have snow days to make up. Otherwise, I’d be poised at the door until July 1st, waiting for the first opportunity to toss the kids into the pool.

Ah, the pool. We have a new one. One of those ready-to-pop plastic deals with three colorful rings that have to be blown up. By mom. That pretty green of the plastic doesn’t make the job any more fun. But, we have to go with the temporary pool for now. We’re moving soon and I like to pack light. Given my husband’s propensity for shopping, I’m always recalculating the household capacity for storage. “No, hubby. Don’t buy something new until you get rid of something old first. And quit looking at me that way or I’ll start charging you for storage.”

Thankfully, my dear son, Matthew, managed to traverse our very full garage to find the pump we use on our camping gear. Matthew has yet again saved me a bit of work. “Mom, why is your face so red.” “All of my breath is inside the pool, dear. No, don’t…*sighs…step on it.”

A few minutes of the pump to the rescue and Matthew gets the biggest smile of satisfaction when he’s able to be helpful to someone. He’s also sure to make sure you know it. Matthew won’t hesitate to ask if I want to thank him for helping me. “Yes, darling. I always do. Thank you.”

The day is saved! Almost. The lawn needs to be cut before the pool can be filled with water, children, toys, and begin its rapid approach to untimely holes and quick patch jobs. “Pass the duct tape, please.”

Matthew has decided that he wants to learn to do ‘odd jobs’ so he can earn extra money during the summer. The older he gets, of course, the more he wants to be like his dad. Well, his dad is often away from us for deployments. Yes, it’s just me and the kids. And my son who has autism wants to be man of the house.

So, still flying high from ‘saving the day’, Matthew is confident and ready to tackle learning to use the lawn mower.

Well, my backyard is currently more of a jungle, thanks to frequent rainstorms and an uncooperative mower that allowed the grass free reign to grow to two feet high. And Matthew wants to mow it. It’s like me at 14 nagging my dad to teach me to drive. I didn’t care that there was a foot of Chicago snow on the ground. Not the best conditions, but try rationalizing that to a determined child.

But, I’m not one to squash my son’s enthusiasm. Especially when so few activities light up his eyes and hold his interest. Anything that involves actually venturing outside of the house is usually rock-bottom on his list.

With Matthew looking on eagerly, I went through the finer points of how the lawn mower works. Step-by-step. Fill the gas, check the oil, prime it, etc. It’s somewhat difficult to do since Matthew will ask a question while I’m in the middle of an explanation. I’ll have to redirect him and start over.

I found it takes a lot of thought to explain how and why the lawn mower works, what not to do, how to be cautious. All the while making certain he understands and without overloading him with information.

Nearing 13 years old, Matthew is almost a teenager. But autism renders his behavior and actions immature. I know how old Matthew is in years, but I see him approach a gas-guzzling, loud, bladed machine, and I see the innocence of a five-year-old child.

It’s funny to me that Matthew seems confident with the lawn mower itself. He’s a big kid. He gave the pull a half-hearted yank. “Matthew, you have to do it in one pull or it won’t start.” “But mom, I don’t want to break it.”

So, he’s not afraid of the mower. But he hates touching the grass. He thinks it’s gross. Instead of touching the grass, grabbing it and helping empty the bag into the bin, he tried to use the end of the rake. “No, Matthew. That won’t really work. It’s just grass. You can touch it.” I had to repeat and demonstrate five times before he would attempt it himself.

Matthew is in an odd stage, for me, I realize as I watch him tentatively push the mower over the grass. I have to applaud, encourage, and teach him, feed his enthusiasm. And I have to balance my caution of teaching a child to use a lawn mower with teaching a child with autism to use a lawn mower. All of this has to be done to nurture his firsts and his accomplishments, without reverting to the over-protective hovering mommy that I often have the urge to be.

Matthew has managed to mow a small section of the lawn. He’s excited to tell his dad about it during the next phone call. While writing this post, Matthew knows it’s about him. He reads over my shoulder. I asked him to hold off questions until after I’ve finished or else it’ll break my concentration. He began to pace back and forth. Then stopped. “Mom, can I go finish mowing the lawn?”

I know, a lot of parents would jump for joy to have their kids volunteer for the task. I’m sure once the novelty wears off and he’s had to mow the lawn a few times, he’ll start disappearing when it needs to be done. Or bemoan in full teenaged fashion and ask for a raise in his allowance.

We’re not there yet. I have a child with autism who needs a touch more guidance through his accomplishments. I’ll enjoy his enthusiasm while I can. For now, he’s actually outside, raking grass. As long as he doesn’t have to touch it.

The next accomplishments are already on the horizon.

“Mom, when I’m 14 are you going to teach me to drive your car?”

“Um, yes, but maybe not my car.”

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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Grandparents: Near or Far, Still Amazing

June 1, 2010 7 comments

This is a guest post by Cheryl Cohen, who is the Online Community Director of IAN Project at Kennedy Krieger Institute.

Here’s an interesting family photo from 1934. In it is my mother at age four, my grandmother, my great-grandmother (who was partially paralyzed by polio), and my great-great grandmother. It was the Depression. These four generations lived together in a small row house in Philadelphia. Like many other multi-generational households, they cooked and ate meals together, shared economic resources, and raised the children. Though the percent of the population living in multi-generation households has declined since then (although it is now on the rise), grandparents and other members of the extended family still play a large role in helping raise children – especially when a child has special needs.

With the help of grandparents, who wanted to share their experiences and learn about the role of other grandparents, the researchers at the Interactive Autism Network (IAN) developed the Grandparents of Children with Autism Spectrum Disorders Survey. We knew that grandparents played a major role in helping their adult children and their grandchildren. But, we wanted to learn (using scientific methods) how grandparents support the emotional and economic needs of their adult children and their affected grandchildren. We also wanted to know how having a grandchild with ASD had changed their lives.

More than 2,600 grandfathers and grandmothers of grandchildren with ASD participated in this survey, which we administered on the Internet.  They came from all 50 U.S. states and the District of Columbia, and every kind of locale, with 17% from cities, 23% from rural areas, and 60% living in the suburbs. They represented a wide age range, from people in their 40s to people in their 80s, and had varied educational backgrounds.  Though the goal of the survey was to gain knowledge about the nature and extent of the role of grandparents, we also wanted to find out the support, services, and information needs of grandparents.

Participating grandparents told us some very interesting things:

  • So that the grandparent could help his/her grandchild, 20% of the families had moved closer to each other. Nearly 8% had combined households.
  • About 30% were the first to notice that there was a problem in their grandchild’s development.
  • Nearly 90% felt that the experience of facing their grandchild’s situation together had brought them and their adult child closer.
  • About 6% of the grandparents told us that a family situation had become so untenable they had taken on the role of parent.
  • While 86% of the respondents were coping very well or fairly well, 14% reported that they were coping poorly.

Find out more IAN’s two-part series, Grandparents of Children with ASD.

Learn about the Interactive Autism Network (IAN) and how you can participate.

Interested in statistics on the multi-generational household in the United States? Visit the Pew Research Center’s The Return of the Multi-Generational Family Household.

Families and Friends Network at IMFAR

May 24, 2010 7 comments

Peter Bell is executive vice president for programs & services at Autism Speaks. He is also a founding member of the Diversity Committee for INSAR and will serve as the co-chair in 2010-2011.

From its inception, IMFAR was a meeting that attracted hundreds of scientists, researchers, clinicians and even students who were interested in advancing the knowledge base of what autism is and how they can help improve the quality of life for those who live with the condition. And though the idea of IMFAR was originally conceived and funded by the two leading national advocacy organizations at the time (Cure Autism Now and the National Alliance for Autism Research, both of whom merged with Autism Speaks) and the M.I.N.D. Institute at UC Davis, the annual meeting quickly became the most popular venue for autism researchers to present their findings, exchange ideas and develop new collaborations to advance the field. Autism Speaks is a major sponsor of the conference.

Eventually a membership organization was formed called the International Society for Autism Research (INSAR) to help advance the quality, size and scope of the annual meeting. In 2008 INSAR created a new peer-reviewed scientific journal, Autism Research, to expedite the publication of key findings specific to the autism community. Without a doubt, IMFAR and INSAR have both been instrumental in developing the field autism research during the past decade as evidenced by the 1,700 participants who attended this year’s meeting in Philadelphia.

As one would expect, many families and individuals who are affected by autism are deeply concerned and interested in staying on top of the latest advances in autism research. It’s also important for researchers to get input from the patient population they serve. Each year, IMFAR attracts a contingency of stakeholders who want to stay abreast of these developments. Last year, INSAR formed a Diversity Committee to increase membership diversity for INSAR as a whole and to increase the participation of family members and individuals with autism as well as those visiting from other countries at its annual meeting.

This year, the Diversity Committee hosted a special luncheon during IMFAR called “Family & Friends Networking Luncheon.” The event was sponsored by Autism Speaks and I helped moderate the discussion. The Diversity Committee selected a panel of researchers from this year’s Invited Educational Symposia who included: Daniel Coury, M.D. (Nationwide Children’s Hospital), Craig Newschaffer, Ph.D. (Drexel Univ.), and Sarah Spence, M.D., Ph.D. (NIMH). In addition, INSAR President David Amaral, Ph.D. (UC Davis) was on hand to provide an overview of autism research in general as well as the history of IMFAR. He welcomed the involvement of families and individuals affected by autism and reinforced their importance in the planning of future meetings.

Dr. Coury, who is also the Medical Director of Autism Speaks’ Autism Treatment Network (ATN), shared details about the ATN and some of the exciting research findings that were presented at this year’s meeting. Many of the attendees were pleased to hear about the focus on GI and nutritional issues, sleep abnormalities and metabolic disorders that are present with many people living with autism. Dr. Newschaffer shared his enthusiasm about the future direction of epidemiology as a means of identifying risk factors associated with autism, in particular the increased focus on the role the environment plays. He highlighted his EARLI Study which is tracking the pregnancies of mothers who already have a child with autism from as close to conception as possible through the first three years of the newborn child’s life. And Dr. Spence discussed several autism-related clinical research projects that are taking place within the NIMH Intramural program including drug trials for immune disorders, sleep issues and epilepsy. Many of these trials are in response to parents’ concerns and will hopefully give future direction for the use and development of autism treatments.

The second half of the luncheon was devoted to questions from the almost 60 family members and individuals with autism spectrum disorders (ASD) who were in attendance. The dialogue was rich, honest and respectful. Some parents got a chance to express their concerns about the lack of treatment options and the need for a larger number of well-informed and trained clinicians in the community. On a final note, each panelist was asked what autism advancement (besides something they were working on) excited them the most. Two responded with the development of drugs for other neurodevelopmental disorders that could be relevant for autism with particular emphasis on older individuals; another was excited about the development of non-pharmacological treatments that have the potential to improve outcomes without drugs and the final panelist was encouraged by the developing consensus on potential risk factors associated with autism.

On a personal level, I was excited to witness the exchange of perspectives among these two important groups, families/ASD individuals and scientists. For us to find the answers we need to help those we love living with autism, it’s going to take strong collaboration between these two and this luncheon served this purpose nicely.

To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php

Categories: Science Tags: , ,

A Day to Remember

April 20, 2010 1 comment

Last month, the Children’s Museum of Pittsburgh hosted 160 guests for an Autism Awareness Day. An area mother whose family participated in the day’s activities sent us an e-mail and a photo that we couldn’t help but share with you!

Gus and Henry had a fantastic time and we can’t wait to go back. Gus has been talking about how cool it was since we left. His favorite thing was the “text rain” installation – the wall projection of letters drifting to the ground. When you stand in front of it, your shadow can catch the letters. Gus told me he wanted one in his bedroom! He also told me the next day that he would like to bring that letter rain home with him and kiss it. He talked me into cutting out construction paper letters and then hanging them from his ceiling (photo below). He smiles every night looking at it before he falls asleep.

This was the first time our family had visited the Children’s Museum. While I used to say we didn’t go because it was too far and we didn’t have time, the fact is, taking two kids with autism to public places can be sort of tough. My boys absolutely LOVED the museum. We can’t wait to visit again. The staff were great with the kids, and there is just so much cool, fun sensory stuff to do; we can’t stay away. Thank you Children’s Museum and Autism Speaks!

- Ellen Cicconi

Gus' "text rain" installation

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