Tuesday, February 24, 2009

Photo and Essay: When Play Doesn't Come In a Day

Image: The mom (me) of this ten year old joyfully took this picture of her son playing with Hotwheels T-Rex Rampage. For more than an hour, he played with the toy as it was meant to be played with while the owner of the toy, his little brother, was at a classmate's birthday party!

When Play Doesn't Come in A Day

I've never been a patient person. I have nearly always wanted to see or get results to any sort of effort almost immediately. As a parent with a child who has autism, I've had to alter my patience level for the better--especially when it comes to play time. Though I realized Rome wasn't built in a day, it took me a little while to realize I couldn't expect my little guy to learn the complexities of play in that short bit of time.

Playtime has been difficult for us since my son was a toddler. Although my son has made vast improvements in this area, it used to be quite a struggle. When my child was three or four all he wanted to draw during our mommy/son art time was a colorful set of lines.

Play groups were difficult then because he didn't have an interest then in engaging with other children and instead preferred to cling to me. Talking to other mothers was nearly impossible and this mom dreaded every single play date on the calendar but went anyway because she felt it was a good opportunity for her son.

Despite the difficulty with play groups, I did find that my son did want to play. However, I was his designated play leader and often found that we were limited as to what kind of things we could do. Play outside of play groups was easier for us because there were fewer distractions.

By necessity I started out by encouraging simplified play. Inspired by the PBS classic, Mr. Rogers, I used paper towel tubes and slanted them at an angle and ran a car down through it. My son picked up on that skill right away and enjoyed the activity for brief periods of time as a two year old. Soon we were pulling off our couch cushions to make ramps for the cars. I wanted him to be able to do other things with cars such as create imaginary roads, but he simply was not ready for that.

At play groups that had mostly typically developing children, I paid attention to what other toys the neuro-typical children were playing with and bought a few of my favorites. One of the most successful toys I was inspired to buy (when my son was about three) was a wooden puzzle that featured eight or ten different sea creatures. It came with a fishing pole and each creature had little round piece of metal on it's surface so that it could be 'caught' with the pole. It still gets played with by both of my boys.

The absolute best decision I made, however, regarding the development of my child's play time was to have another child. I gave birth to our second born son, who is neuro-typical, six years ago. Fortunately, for my husband and I, the boys turned out to be compatible and they are, in their own words, "best friends." I realize that there are many kinds of possible outcomes and a sibling doesn't necessarily always make the best play mate for a brother or sister with special needs.

I feel lucky every day that my six year old has the ability to lead my ten year old with autism in play. I have to admit that C2 has more ability to lead his brother in play than I do. It's wonderful to see my ten year old with playing with toys in the way they are meant to be played with. Although I would have kept trying, I believe that having an in house playmate has led to quicker development in this area.

We still have a ways to go. Even now, our play time hasn't always been smooth. There have been times when both of my guys went out to play with the neighbor children and my oldest came back in tears because he didn't understand what they were doing. In one particular case, he was chased away because they were all performing 'jobs' and he kept interfering because he didn't know what to do. I took him back and explained that they should give him a job, but stuck within hearing distance in case they decided to take advantage of the situation. In short, group play with two or more children is still difficult for my son. Individual or one on one play is much easier.

As for now, in regards to play, my biggest challenge with play is to get my son to school in time! The desire to play with stuffed animals in the morning hits hard and threatens to make us late nearly every day!

Friday, February 20, 2009

Book Suggestions, Integrated Play, and Expert Players

Image: My son and a friend look at a gift from another child. The two are typically developing children who can be defined by Author Pamela Wolfberg as expert players. In the unseen background is my ten year old son with a mild form of ASD. He is a child who can be defined as a novice player. To my delight, he played with balloons and hit a rainbow pinata along with the four other typically developing children.

Current series at Autism Blog: teaching children with Autism Spectrum Disorder how to play.

I have great news. After publishing my last post, I discovered that Pamela Wolfberg has written a revised edition of her book, Play and Imagination in Children with Autism. It will be available on Amazon by April 4, 2009. She also has written a book titled Peer Play and the Autism Spectrum: The Art of Guiding Children's Socialization and Imagination (2003) which also looks promising. In the meantime, here are some summarized ideas from her previous version of Play and Imagination in Children with Autism (1999) that are still relevant today.

Defining Play:

According to Wolfberg's research, play is a voluntary, pleasurable activity that requires actives engagement with other children and/or toys, etc. Sometimes play has a non literal orientation meaning that a blanket can become a flying magic carpet or an entire living room can become a jungle. With play activities such as playing house, for example, there is a greater attention on the process of playing rather than obtaining a goal, (well it should be that way, though some children get competitive during games.) Amongst typically developing children play is a flexible and changing activity.

Importance of Play: When playing children learn how to communicate with both words and symbols (the blanket as a magic carpet, for example) while also learning social skills such as taking turns that will help them gain social acceptance by peers.

Integrated Play Groups: Pamela Wolfberg's book is a result of her research on a comprehensive play intervention for children with autism. The name of this intervention is integrated play groups. The group is composed of two groups of players: expert players who are a typically developing children who have an inborn ability to engage in social and symbolic play; and novice players, children with autism spectrum disorder who need to learn how to engage in social and symbolic play. The groups is monitored by a group guide whose role is to observe and interpret the activities and interactions of both groups.

My thoughts: I believe her Integrated Play Group model has possibilities as a low cost intervention that can benefit most children with ASD, whether they live in a densely populated urban area with many therapeutic choices available or in sparsely rural settings where choices for families are limited. I would love to see this model imitated in communities across the United States and beyond. For more information about integrated play groups please click on this link, which will take you to the Autism Institute, a site with which Pamela Wolfberg is affiliated.

My next post: An essay about the difficulties that one particular child (my son) with ASD has had with playtime.

Book Focus: Play and Imagination in Children with Autism

Image: Cover of Play and Imagination in Children with Autism by Pamela J. Wolfberg

My newest series of posts is going to be about introducing the concept of play to children with autism. What topic can be more fun to write about? For my next round of posts, I'll be writing about toys, play leaders, groups, play therapy and last, but not least--the ideas about play that Pamela Wolfberg offers up in her book, Play and Imagination in Children with Autism.

Although this book is almost ten years old and written it an academic style (the book is a product of her dissertation, a paper she wrote to obtain her doctorate degree), it gave me hope because it focused on her work with children between the ages of eight and eleven. As a mother of a now ten year old boy with autism, I was told by my son's developmental pediatrician, who also happened to have a Play Therapy business (based on the concept of floor time), that my then six year old was almost too old to benefit from the therapy. I ended up passing on that therapy because it was too expensive (in both money and time) and our insurance didn't cover the cost.

So reading how three children benefited from an integrated play group (a group comprised of children with and without autism) was rather enlightening in a good way. Though I do believe that early intervention is essential for individuals with autism, I'd also like to think that there is something parents can do to help their older children function better with their peers and in society in general. Teaching children through play is one of the most fun ways to accomplish that goal.

This series at autism-blog.net, however, will be crafted to also help parents with younger children as well. The target audience for this series will be parents who have autistic children between the ages of 2 and 12.

My next post will go a little deeper into some of Wolfberg's ideas. I'll be sharing her definitions of the characteristics of play as well as some of her other ideas. Please stay tuned!

Saturday, February 14, 2009

Happy Valentines Day 2009

Image: Celtic Heart by Julie Lorenzen. Hope you like it!

Thursday, February 12, 2009

Essay: Thinking about a quote about emotional support and mothers

This week, as I've been using Autism Society of America's magazine, Autism Advocate, for inspiration on my series of parental support. The most current issue, on my lap at the moment of typing, is mostly about Applied Behavioral Analysis (ABA), but what really caught my eye was quotes and/or articles about parental support. It's hard for me think about the benefits of ABA as the therapy was simply not available in my area when my son might have benefited from the therapy as an early intervention. My guy, C1, is ten now and ABA is still not widely accessible in Central Michigan, a mostly rural area.

So no, I'm not writing about ABA today. Sigh. I'm focusing on a quote that the authors Edward G Carr, Doreen GranPeesheh and Lee Grossman include in their article "The Future of Applied Behavior Analysis in Autism Spectrum Disorder." They are citing M.J. Weis, who published an article on parental support in the journal Autism in 2002. Here it is:

"Mothers of children with ASD perceive less availability of emotional support and friendships than both mothers of typically developing children and children with mental retardation."

In critiquing the use of the quote, two factors jump out at me. The first is the word "perceive". Does that mean that mothers may have more emotional support than they actually realize, or are their perceptions accurate? The second factor that jumps out at me is the year 2002.

A lot of developments have occurred since 2002. There has been an increasing amount of awareness of autism with more people recognizing the disorder than ever before. Also, there are more opportunities offered to families who have a family member with ASD, than there was even six years ago.

In six years, more opportunities have become available even in an area as rural and somewhat remote from big cities as mine. No, we don't have ABA, but we do have a summer camp for children with Asperger's Syndrome that began the summer of 2007 and a support group for parents who have children with autism that began four or five years ago. A small group of us are also in the process of getting an ASA chapter up and running. So yes, there is support on the community level. Whether or not there is support or not on an individual level is completely relative. It depends on the circumstances surrounding each family.

Delving a little deeper, it doesn't surprise me that mothers of children with mental retardation might perceive more support because people with cognitive impairments, in many cases, have a set of social skills that make him or her easier to understand on a social level. People with autism have social impairments and, as a result, can seem difficult to reach or understand.

While mother of a child with autism, may understand her child on a deep level, a person on the outside of that two-person circle may have trouble looking beneath the surface of stims, unusual behavior, and the avoidance of eye contact. In short, it's unfortunate, but if a friend or family member feels intimidated by the social behaviors of the child with ASD, they may become less socially and emotionally available to the mother. It helps if a mother tries to bridge the gap between the child with ASD and those people around her, but sometimes she is so overwhelmed with raising the child that she doesn't have the time and energy to build the bridge.

Also, as autism is a spectrum disorder, it's possible that the level of support may be altered, for example, by whether or not the child is severely impaired and also the amount of social skills the parent, who may or may not have a form of autism or may or may not be dealing with a personal issue such as depression, has. A lot of factors that are too numerous to mention specifially can influence the level of support for mothers and/or fathers (marital status is a big one) of children with ASD. Even though Weis had the words today's featured quote published in 2002, I can see that those words can ring true for many moms and dads. What do you think?

Sunday, February 8, 2009

Positive Behavior Support: Assisting Families

The idea for this post came from an article from the Autism Advocate, the official publication of the Autism Society of America. The article, by Glen Dunlap, PH.D., is titled "Positive Behaviour Support: Assisting Families with Behavioral Strategies in Home and Community Settings."

Dr. Dunlap describes Positive Behavior Support (PBS) as a plan that involves the following three components:

(1) teaching the child functional (usually communicative) alternatives to problem behavior.

(2) adjusting the antecedent environment to remove triggers for problem behavior and increase stimuli associated with desired prosocial responding.

(3) increase the availability of positive reinforcement for desired adaptive behavior.

Implementation of PBS with Families

According to Dr. Dunlap, the process of family-centered PBS is developed and implemented by a team which may include extended family, friends, teachers, or other professionals. He writes,
"it must at a minimum include the key family members who will be responsible for implementing the intervention and an individual who is knowledgeable and experienced in behavioral principles (i.e. behavioral expert). " The expert's job is to provide information about evidence-based practice, guidance in assessment and intervention and assistance in implementing the plan.

The idea of family-centered PBS is to treat family members as the most important team members because they are the ones who provide the necessary information about the family's needs, goals, preferences, characteristics, etc. The hope is to help the family design and implement an effective intervention strategy for a specific behavior problem area such as, for example, getting ready for school, and, in doing so, help the family acquire the basic knowledge of PBS and to repeat the process when problem behaviors occur.

My thoughts: I didn't know there was a formal name for my ideology of managing autism at my home! I didn't, however, have a team leader to help me out. I developed it out of going to countless parent support meetings, team meetings with my son's therapists and teachers at school, speaking to current and future special education teachers and reading information on the web.

In the article, the author uses three examples of how this strategy worked with three different families. I'm wondering if these were families in big cities as I don't think this is a program that is available in small, rural communities like mine. It would be wonderful if PBS was offered to families by local agencies like Community Mental Health.

Monday, February 2, 2009

A Numb Heart Melted

Image: Taken at my aunt Bess's house during Christmas 2007 shortly before the two moved into an assisted care apartment. Here my cousin Max had just made a rare request to have my oldest son, who has autism, sit on his lap. My usually reluctant son agreed. The matching outfits and demeanors were a complete coincidence.

And the Tears Flowed

The tender heart of my youngest child (not pictured above) touches me. He cried when his goldfish that he had all of two weeks died in mid-January. To me it was just a goldfish and I would have rather flushed the da*n thing down the toilet rather than create a little casket for my young one to decorate before finding some earth near the house that wasn't too frozen to dig a shallow grave. We had a short graveside service. Tears slid down my dear one's little face while mine stayed dry as I said a little prayer and sang a little song. All I really wanted to do was get out of the frigid air and into my warm house and go on with life.

As a child born to two parents who were 43, I've said too many graveside goodbyes to people I loved to get upset by the loss of a goldfish. In fact, I've said so many goodbyes in my 37 years that my tears have frozen up. I never knew my grandparents on my mom's side. My dad's father died when I was three. My paternal grandma died at age 91 when I was nineteen. My mom died a painful death of cancer when I was 24, a tough loss. My last uncle died five years ago and my last aunt died last February at a time when the weather made the roads too awful for me to make the three to four hour drive in order to attend the funeral.

For so long, I've been numb to the pain of losing someone. I admit I cried some when my dad died unexpectedly last May. But it didn't seem like I shed as many tears as I should have given the circumstances. All I can say is the dam didn't break. Though my heart felt broken, I cried a little when it first happened and that was it.
Today though something happened. I didn't 'turn anything on or off.' The dam let loose. Tears rolled down my face and they just wouldn't stop for the longest time. I'm feeling the loss of my 73 year-old cousin Max, whom I only saw two times per year--at Thanksgiving and at Christmas time. Max was what the world called 'special.' He couldn't see well, had a mix of cerebral palsy that froze up his 4'11" frame (in a painful way) and also had cognitive impairment that that sometimes manifested in autistic like ways.

When I was five Max started calling me (then a tiny girl with long wavy brown hair and big hazel eyes) 'Princess Firefly.' Of course I never objected to that--never questioned it as strange. When I became a teenager, I was honored when he wanted to grab onto my arm so that I could walk slowly with him and help him get to from church into his mom's car parked in the handicapped section. I smiled this past Christmas when he seemed to take to the glittering little snowman attached to a shiny red bell that I tucked in with homemade goodies I brought him. He kept asking me if its name was Frosty. His sister said he'd probably keep talking about it through the rest of the holiday.

Max was the one who taught me the patience that is necessary to being a successful special needs mom. Every time I saw him, he would ask the same questions over and over again like when my birthday was or what color my eyes were--hazel, the same color as his. Sometimes he would ask me a question and I would say something along the lines of 'I don't know Max, you tell me,' and then he would answer his own question correctly.

He loved football, cars, and getting postcards and Christmas cards and swimming in his care facility's therapy pool. Up until about two years or so, he lived with his mom in a two story white house in the country. When his elderly mom became too frail to care for him, his sister and family found a retirement village that had an assisted care apartment where he resided with his mom until she died and where he continued to live until he became sick a day or so ago with congestive heart failure.

I never thought one would live long without the other and that is the way it happened. My aunt died eleven months ago. Max couldn't tell us how he felt about the loss of his mom, but I wonder if he died of a broken heart.

It's winter, so I don't know if I'll get to go to his funeral. So today, through the watershed, I'm taking time say goodbye to a guy who rarely gave hugs, but did give a lot of love, gave kisses that were way too hard, and made a joyful fuss when getting a peck on the cheek. Today, in my heart, I said goodbye to a guy that seemed to feel a connection to my son with autism. Today, my numb heart melted and I finally cried while saying farewell.