Sunday, January 30, 2011

For The Engineer At Heart

There are some toys at our center that kids of all ages seem to gravitate towards and they typically revolve around building things! I will mention a few of them in this post.

The Marble Run

A great hands on toy that sparks creativity in all that try it! I've 
noticed that individuals with ASD seem to build structures 
with the marble run effortlessly ;whereas, it seems to take me 
forever to figure out how it's all going to work together! Not only
do kids love to build with the pieces, but they also love to watch 
the marbles go down the chute! The only word of caution for this
toy is to be careful if you have a small child-- he/she may love the 
cause and effect aspect of watching the marbles fall, but it is not
appropriate for kids who like to put things in their mouths!


 Gears by Learning Resources is another toy that is a must
have for our waiting room. We've had this set for years and 
it's held up amazingly well for the amount of people who 
have played with it. You can build horizontally or vertically 
and watch all the gears move together like a machine. 
The set does not come with instructions of what to build so 
like the marble run, it allows for a great amount of 
flexibility and creativity!


Not a cheap product, but one that is great for individuals who
love to build and use their hands! Most kids in upper elementary
school and even into middle and high school seem to love 

You can find all of these products and different variations at among other stores. Based on our experience, they are all a hit with many individuals on the autism spectrum who tend to have a strength in the figuring out how things work!

- Molly 

Thursday, January 27, 2011

Perspectives From Those With Autism/Asperger's

Adults with autism and Asperger’s have given us a unique point of view through many books.  Being able to share their life, their struggles and what differences they noted over the years has been helpful for the rest of us to understand autism more.  Temple Grandin is probably one of the most notable starting with ‘Thinking in Pictures’ and many more have followed suit since that time.

‘Born on a Blue Day’, by Daniel Tammet, is quite fascinating especially for the fact that the author has other unique abilities in addition to autism.  I was intrigued by his explanations of his form of Synesthesia which refers to how he seems to associate numbers and colors with the world around him.  He is one of approximately 50 people known that have both Synesthesia and autism.
Daniel describes his amazing memorization in which he can learn new languages in seven days and recite Pi to the 20,000+ number sequence, to name a few.  Although having these phenomenal abilities, he still struggles in areas of abstract concepts and social norms.  Daniel appears to have had a supportive family and good upbringing that was a great foundation for him; especially since he has such unique skills and perceptions.  His life story also was featured in a documentary called Brainman in 2005.  This book was a great read that did lose me a few times with his intense interest in numbers.  I think it isn’t necessarily a captivating story but rather a great description of a man with an extraordinary savant mind.

Switching gears a bit, I recently read ‘Look Me in the Eye’ by John Elder Robinson.  I had previously read his brother’s memoir ‘Running with Scissors’ which described the unstable, abusive and neglectful life these boys grew up in.  Knowing that background, it prepared me for the references to abuse that John described but did not make it less disturbing.  However, with this horrific upbringing he was still able to overcome and as John said in an interview, “Despite the odds, I did OK”. 
John’s perspective as a youngster that was always getting into mischief was important because it often did not have the intent behind it that one would assume.  He also goes into great detail about his special interests and how they helped him make his career choices.  There were many social norms that he had to learn on his own and he describes many occasions where he was seen as rude, arrogant, detached or uninterested but did not always know it at the time.  I think John’s life was not a fairy tale in the least but shows how much he was able to overcome.  I thoroughly enjoyed the book and highly recommend. 
John was not diagnosed until later in life and I thought the statement by his therapist was important for us all to remember.  In his book, John is told he has Asperger’s and his response is:

“So is there a cure?”  
The therapist says, “It’s not a disease.  It doesn’t need curing.  It is just how you are”


Tuesday, January 25, 2011

The Power of Video- Autism Speaks ASD Video Glosary

You may be a parent who has heard a teacher or other professional mention the word autism in regards to your child, but your child has never been evaluated and you're not even sure what that word means. Perhaps you've stumbled across this blog in your research efforts to find out more. Autism Spectrum Disorder (ASD) can be a puzzling diagnosis because all children on the spectrum are so different from one another and present with varying symptoms. On the Autism Speaks website there is an amazing video glossary link:  that helps break down the early signs and symptoms by showing real life children with and without autism. All you have to do is click on the link and provide an email address and password and you have free access to the site.

The ASD video glossary provides video clips in the three areas that comprise an autism diagnosis, which are Social Interactions, Communication, and Repetitive Behaviors & Restricted Interests. In addition, the glossary also includes clips of Regulatory and Sensory System Responses, which are often part of autism spectrum disorder.

The first segment of videos on Social Interactions shows clips of children with autism as early as 12 months of age compared with typically developing children that same age who are shifting eye gaze from a toy to a clinician easily. The videos show many different social behaviors at various ages that are divided into the following categories:

  •  Non-verbal Behaviors
  • Engagement
  • Shared Attention
  • Social Reciprocity

    The next category of clips is on Communication. Again it juxtaposes videos of typically developing children to those who have what they call as "red flags" for an autism spectrum diagnosis, such as not responding to his/her name. There are separate videos on the following categories:
    Expressive/Receptive Communication
    Repetitive Language
    Make Believe Play

    The third area of an autism diagnosis is Repetitive Behaviors and Restricted Interests.
     Within this area the ASD Video Glossary shows segments depicting:

    •  Restricted Patterns of Interests
    • Insistence on Sameness
    • Repetitive Mannerisms
    • Preoccupation with parts of objects

    All of the above categories and symptoms are detailed in the Diagnostic and Statistical Manual or DSM IV.  Although not as clearly laid out in the DSM IV, sensory differences and emotional responses can often be included as part of a diagnosis and lumped in the third category mentioned.

    I like how Autism Speaks shows video clips of Regulatory and Sensory Systems because emotion regulation and sensory responses are often very common issues for individual's on the spectrum. The video glossary shows examples of:

    Over reactive responses
    Under reactive responses
    Unusual Sensory Interests
    Emotion Regulation

    When you have time, please check out the ASD Video Glossary; the site shows over 100 videos of children of different ages to help parents and professionals recognize signs and symptoms early! Not only does it compare children with signs of autism to typically developing children, but it also shows the same child with autism and how the symptoms look at various ages.  It may be that as a parent you, yourself are familiar with the signs, but your child's teacher or perhaps a family friend does not view these symptoms as any more than typical child development-- encourage them to go to this site as well so that they are more aware and educated about autism spectrum disorder. It truly is a great resource!

    Let us know if you've come across other resources you've found helpful!


    Friday, January 21, 2011

    'My Mouth is a Volcano' & 'A Bad Case of Tattle Tongue'

    Social and communication difficulties go hand and hand with children with autism.  Some of the more subtle rules are the hardest to learn.  Often we don't have to teach these skills because kids typically just pick up on them from watching others.  These two books use simple language and colorful pictures to capture some of these situations. 

    My Mouth is a Volcano
    I highly recommend this book.  This book tackles a difficulty that many children on and off the spectrum face; talking when it is not appropriate.  It looks specifically at a child that can't help but blurt out comments in class, talk about things that are not related to the conversation and interrupting family members when they are talking.  It is described as this uncontrollable urge that he has to learn to cope with.  He learns how others feel when he does this by looking at how he feels when other children do this to him.  There are beautiful illustrations along with short passages on each page.  It also describes what the child needs to do when faced with the situation.  Great book overall!

    A Bad Case of Tattle Tongue
    Another adorable book with great illustrations.  This book is very cute in describing a child that goes around tattling and telling on everyone.  It tries to make the distinction between when you should tell an adult and when you shouldn't.  The child in the story is made to believe that his tongue will grow long and turn yellow with purple spots if he tells on others.  The book describes when you need to tell someone would be if there is danger.  There are also rules to tattling that many but not all individuals could use to know what are times that you tell others. 
    I do have a few worries with children on the spectrum.  Often, children with autism have difficulties asking for help from others and to further discourage may be a problem.  Additionally, those on the spectrum can have anxiety and difficulties with imaginary concepts.  It could be frightening to some that would assume their tongue could actually turn yellow and purple if they talk to others.  I think that this book can be very helpful but possibly not for everyone on the spectrum. 



    Monday, January 17, 2011

    Asperger's and Girls- Insights from Professionals and Women on the Spectrum

    This past fall I had the pleasure of attending a conference on ASD and Tony Attwood, a Clinical Psychologist who practices in Australia and works with many individuals with Asperger's Syndrome, was one of the key note speakers. He mentioned this book in his lecture and I knew that I had to get my hands on it. Asperger's and Girls is a book that is comprised of several articles written by experts in the field as well as several women authors who have Asperger's or ASD themselves.

    The book covers many topics unique to females on the spectrum beginning with an article by Tony Attwood on the early signs that are often masked in girls. He makes the point that research shows that the ratio of females to males on the autism spectrum is 4 to 1, but in practice only 10 to 1 are identified. He comments that girls usually have a less severe expression of the disorder. For example, 

    • Girls tend to be less aggressive so may fly under the radar,
    • Their peer group at this age tends to be more understanding & inclusive so they are less often left out,
    • Many girls with Asperger's become excellent observers and can mimic the behavior of others 
    • Play in girls with Asperger's may seem more appropriate or closer to the mainstream of girls that age, such as an interest in dolls and animals. 

    He goes on say that superficially the play of girls with Asperger's may seem imaginative and flexible, but if you peel back the layers and look below the surface, you notice that it is often inflexible and scripted from events they've seen on t.v or in real life, for example. 

    We, as clinicians need to be sure to gather information from parents as well as to observe young girls in more than one environment, if necessary so that we do not miss the patterns of behavior that may at first appear creative and inventive. Tony Attwood is adamant about the need for a better understanding of the quantitative and qualitative differences in girls with Asperger's so that they will begin to be recognized and identified earlier and therefore receive the services they are entitled to.

     Apart from the first article in the book, the other articles focus more on issues women with Asperger's encounter as they enter adolescence and beyond. Therefore,  I would be cautious about recommending the book to parents of young girls who are identified at an earlier age as I think it would be a more appropriate resource for parents of girls who are entering puberty or moving into adulthood. The other articles included in the book are:

    • "Asperger's Syndrome in Women: A Different Set of Challenges" by Catherine Faherty
    • "Educating the Female Student with Asperger's" by Sheila Wagner
    • "Girl to Girl: Advice on Friendship, Bullying, and Fitting In" by Lisa Iland
    • "Preparing for Puberty and Beyond" by Mary Wrobel
    • "The Launch: Negotiating the Transition from High School to the Great Beyond" by Teresa Bolick
    • "Aspie Do's and Dont's: Dating, Relationships, and Marriage" by Jennifer McIlwee Myers
    • "Maternal Instincts in Asperger's Syndrome" by Ruth Synder, and
    • "For Me, A Good Career Gave Life Meaning" by Temple Grandin

    I am so glad that a book like this is out there to help others understand the experiences of women with Asperger's. I plan to recommend this book to women on the spectrum in hopes that they can find common experiences from the stories these authors have shared and feel more of a sense of belonging. As professionals I think we have a responsibility to look differently at the issues of females on the spectrum and bring more attention and awareness to the presentation of symptoms and unique set of challenges they face!

    - Molly

    Saturday, January 15, 2011

    The Autism Food Fight!


    The dinner table can be a war zone especially with a child with special needs.  Professionals and parents often feel defeated when trying to introduce new foods or even maintaining a balanced diet.  What can we do to assist in making mealtime pleasant?

    • Eliminate Distractions:  Bring dinner back to the table.  It is hard to rein a child in for trying new foods when they are running back in forth in front of the TV.  Sit in an area that helps the child focus on the meal that is taking place at that time.  There are some kids that are overwhelmed by too many people at the table so also take that into consideration.  This is especially true of the school cafeteria.  Many students are much more successful when eating in a classroom with a smaller number of students.   
    • Be Patient:  It is ridiculous to encourage patience in a time that is so frustrating BUT realize it takes lots of time.  Even children that are not on the autism spectrum take 12 exposures or more to new foods before trying.  Most of us, even with typical children, give up way before then.  Keep bringing out those new foods and continue to have them on the child's plate or at least within sight.  The more familiar the food, the more likely the individual will be to try it.  Even touching or smelling a new food can be a big step so take it slow with these changes.
    • Be Sneaky:  Find creative ways of introducing foods or at least add more nutrients.  We all know that children with autism are unbelievable at their ability to tell whether their mac and cheese came out of the 'blue box' or not but that doesn't mean their taste buds can't change.  Slowly try to incorporate new tastes into already favored foods. 
    • Show the Progress:  Sometimes telling the individual ‘take one bite’ or ‘eat this and then you get that’ isn’t enough.  Show with pictures or even the actual food.  Seeing that this food comes first then they can have something they enjoy.  When using these steps realize that some children may have to work up to taking a bite and may have to lick or smell the food for a while to get more familiar with it. 
    • Use the Love of Knowledge:  High-functioning/Asperger’s individuals often have a knack for facts and information.  Use this interest to help progress their eating skills.  Learn the food pyramid and show how this translates into the food they eat.  Use ‘Social Stories’ (by Carol Gray) to help inform them of why this is important and how they can put it into practice. 
    • Consult Your Doctor About Diets:  Lots of individuals have benefited from food changes such as gluten-free/casein-free diets.  It is wonderful if there are benefits seen but use caution when further restricting an already picky eater.  Continue working with a pediatrician to ensure that all nutritional needs are being met.  Even things such as iron levels have been shown to affect attention so make sure the foods are meeting the needs of the child.  Talk to the doctor about multi-vitamins that may be needed.
    • Be Aware of Sensory Needs:  Many children have sensory preferences when it comes to foods.  This means that they might like crunchy crackers or salty foods.  Also, it could be that slimy foods make them gag or throw up.  Keep this in mind and consult with an Occupational Therapist that specializes in working with sensory differences.

    A few ways to incorporate new foods:
    • Cook and blend fruits/veggies into a puree (like baby food).  These can be easily added to things your child already eats.  Add squash puree to mac and cheese, spinach to spaghetti sauce, applesauce to pancake batter, etc.
    • Make food fun!  Use an interest in letters by cutting sandwiches into the alphabet.  Cookie cutters and ice cube trays with shapes/characters can be useful tools in the kitchen to make things look more appealing whether its jello or meatloaf. 
    • Share recipes with other parents and professionals.  Find recipes that have worked for others and get fresh ideas. (Below is one our favored recipes and we would love to hear some of yours!)
    Spaghetti squash patties
    1 cooked spaghetti squash, inside of squash can be shredded with a fork after cooking
     (To bake squash: poke squash with fork, put in baking pan, 375 degrees for one hour)
    1/2 cup whole wheat flour
    4oz grated Parmesan cheese
    4 tbsp olive oil
    pinch of freshly ground black pepper
    1 tsp fresh chopped chives (optional)

    In a bowl, thoroughly combine the squash with the flour, cheese, black pepper and chives.
    Heat the olive oil in a frying pan (skillet) over a medium heat.
    Spoon 2 tbsp of the squash mixture into the pan and flatten.
    Cook until golden underneath, then turn with a spatula and cook on the other side.
    Continue cooking the individual patties separately, then cool to a safe handling temperature and serve.
    (Use a dip that the child enjoys to make it even more appealing!)

    We would love to hear some of your success stories and tips! 


    Wednesday, January 12, 2011


    The Task Galore books are wonderful resources for professionals and parents working with individuals with ASD. There are several different versions, not all of which are shown here. What's great about these books are the colorful photos of the tasks, which make them easy to replicate.

    The authors, Laurie Eckenrode, Pat Fennell, and Kathy Hearsey use everyday materials to teach important concepts, such as fine motor skills, math, daily living, and social skills. How materials are presented and organized is extremely important when working with individuals with ASD to ensure that we are targeting the skill we are trying to teach. When materials are falling on the floor and are not set up properly, then it's easy for the child or adult to rely on others and then we can't be sure if they understand the concept. These tasks are visual and help individuals become more independent with the skills we are trying to teach!

    This book provides a number of examples of task ideas to teach fine motor skills, 
    readiness concepts, language arts, math, reasoning, and play skills. Also in the book
    are forms you can use to document the concepts you are teaching and tasks ideas of your own.

    Photos of task ideas to teach fine motor skills

    Visual examples of ways to teach math skills included in the book

    This is a great book to teach "Real World" skills as suggested by the title. It provides
    colored photographs of tasks to teach domestic skills, independent functioning,
    vocational skills, as well as examples of job sites that actually use this type of structure

    Examples of tasks that structure for grocery shopping in the

    Visual ways to adapt common recipes included in the book

    This book is an excellent resource for teachers in particular as well as parents
    who are looking for ideas to plan for group activities, such as birthday parties
    or other social outings. "Tasks Galore: Making Groups Meaningful" gives ideas
    of how to make the physical space meaningful for individuals with ASD,  how to
    use schedules to visually show what is going to happen that day, as well as ways
    to present activities so the individual can see how many activities they need to do 
    and in what order.

    Ideas for how to structure for group activities, such as circle time

    Visual ways to use "to-do lists" when planning for a party

    The Task Galore books have been an invaluable resource to me as a therapist. They provide numerous examples of different activities,  but also allow for you to use your own creativity to individualize for you client, student, or child. Visuals are not only essential for individuals with ASD, but they help us all tremendously!


    Monday, January 10, 2011

    Your Child is Diagnosed, Now What?


    Parents often feel at a loss of what to do after the diagnosis of autism or a related disorder is given.  Knowing where to start and what to do seems completely overwhelming. 

    Autism Speaks has great resources for families and their '100 Day Kit' is no exception.  This wonderful, FREE kit includes:
    • How the diagnosis is given, what are the criteria and statistics.
    • How to handle the diagnosis, deal with family situations and questions that may occur.
    • Early intervention and public school services that are available.
    • Therapies/Interventions that are available and a description of the various techniques.
    • Finding the right professionals to work with your child.
    • Tips to keep in mind with your child's difficulties.
    • List of resources online and books.
    • A plan of organizing the steps for the next 100 days broken down into each weeks goals and objectives. 
    • Tips for keeping your child safe
    • Pages to help organize your notes, interventions, research, goals, etc.
    • A glossary of terms that are related to autism and autism services. 
    This wonderful kit can be downloaded or ordered at the Autism Speaks website:   At this link there is also a separate kit for High Functioning Autism/Asperger's that includes some of the unique challenges that those individuals may have.

    I highly encourage parents print or order a kit for their family.  I think professionals can also hugely benefit from becoming familiar with all of the information included to better work with and advocate for families. 


    Saturday, January 8, 2011

    Be Your Child's Voice: A parent's perspective

              Our son was almost 3 when we signed him up to start at 3 day a week preschool. I had gotten a job there as a teacher in another room and our daughter was in the 4 year old class so it seemed perfect. The first few weeks weren’t bad however we never knew what we were headed for. I had been told by a friend not long before that she thought our son some type of problem such as autism or ADHD because he never liked to play with others the way kids his age did, he was more of a loner however did play well on his own. He also didn’t like to use crayons and just seemed to take off running everywhere and from everyone. We didn’t give this much thought as many people said “he is all boy” and “boys are so different than girls”. We didn’t think much about this until he started preschool.
    My son, struggled being around the group of 9 other kids in the preschool classroom. It was a small room and having that many bodies running all around him bothered him more than we knew. He would hide under tables or rugs, and then was put in time out for doing so. He would touch other kid's heads  and would bump them or push them away if they got too close. Again he was sent to time out over and over and sent to office for “hitting others”. We didn’t know at the time this was all his sensory issues. He couldn’t handle the crowd in a tiny room, the loud music and kids running all around him, kids being too close to him. This all bothered him more than the average child. A bump from another child felt to him like a hit so he would strike back.  I had to leave my job to take care of my child. I put my son first since I knew something was going on and I was on a mission to figure out what it was. It was at that point that we realized others thought he was being a “brat” and “just needed a good spanking” but they were wrong, I knew it was something else. I was going to be my sons ADVOCATE!
    It took several years of therapy and many Dr. appointments to figure out exactly what was going on with our son. I noticed a few other parents who had children with similar characteristics/behaviors and said their child was just being a boy or stubborn and felt bad the parents wouldn’t do more. I couldn’t do that, I had to do ALL I could to find out what was going on. How could I not??? I had to stand up for him, he had no voice, he was a baby at only 3 at this point and I knew early intervention is the key!!!
     We went to the neurologist after his Occupational Therapist noticed slight tremors in his hands which was why he didn’t like to write or draw, it was hard for him. It was impossible for him to draw a straight line and he would just get frustrated. At one point he told a therapist “my hand won’t let me do it” and I just broke down crying when she told me he had said that. He was recognizing his issues. This made me fight harder for my child to get what he needed! The neurologist had to rule out seizures since he had the tremors so he had to go through MANY tests like an MRI and sleep deprived  EEG and then had 8 viles of blood drawn (in one sitting) to test for medical  issues. All of this was very difficult but they had to rule out anything major before we continued. Luckily nothing was found so they concluded the tremors were all sensory. We were not happy with one neurologist who seemed to keep us waiting 45 minutes for her first appointment of the day and just didn’t seem to notice the tremors and everything else we and the OT had noticed, so we immediately began looking for someone else that would be a good fit!  I am so glad we did that. I never regret going with my gut instinct about something like this. You know your child and know when something is not right or doesn’t feel right and have to be assertive but it pays off!!
    My son was diagnosed at 3 with ADHD however I still felt something was not exactly right, I felt there was more to it than that. I had been recommended to someone who I felt didn’t take the necessary time for the evaluations and seemed to just go with the popular ADHD diagnosis. We are presently in the process of finding another Psychologist to reevaluate him as there is so much more going on than just ADHD.
    We had to also go to a behavioral therapist for my son as we had trouble with him at home and with teachers and she did an evaluation. Her results, although not a diagnosis, did show what we had thought as well, that he had PDD which is Pervasive Developmental Disorder. This is on the Autistic Spectrum. It didn’t mean he was autistic per se, but meant he shared a lot of characteristics of autism. This was heartbreaking to hear and we spent time “mourning” you could say. You never want to hear anything is wrong with your child. You assume it something minor that they will outgrow but hearing this and reading about we knew, this was right, this is what we have been dealing with!  In some ways it was nice to FINALLY have an answer and to know what we are dealing with since it took several years to get to where we are!  We were sad to find out that this would be something he would not outgrow.  He would have to learn to how to deal with it.  As parents,we would have to learn to deal with it as well.  It may get easier at times but it will always be something we have to face. We have accepted that now and realize we wouldn’t trade him or change him for the world, he is our boy and we are so proud of him!
    We were ready to sign my son up for kindergarten last spring. I was still being such a strong advocate for him and made sure when I went to sign him up that the principal knew he had attended the schools special preschool classroom, for those with special needs so they knew where to place him. He would be placed in a typical classroom which we were thrilled about! He would still have an IEP and receive special services at school.
    As the time approached for him to start school I began to feel sick to my stomach from anxiety. We received a teacher assignment letter and I immediately contacted the school and had the principal call me back. I wanted to be sure they remembered that he had an IEP and what his issues were and wanted to ask if this teacher could work with him. I wanted to know specifically if they had any background teaching children with these needs. I was so proud of myself for doing this, as I found out our teacher was the best we could ask for. It was her first year and she had much experience working with kids with special needs in the past. I wrote her a LONG 3 page letter explaining my son and all he has gone through. I wanted our son to be prepared for school and for her to know all about him, this could change his life if he starts off right and has a good experience starting school! She actually called me back and we met face to face. She was SO excited to have him in her room and had all these ideas of things that worked with kids like him already set up to start on day one. She had even brought in his preschool teacher to meet with us and she got all the information from her about what they worked on the previous year! 
    This is the advocacy for our son I am so very proud of and will never regret all I have done to push for services, all the calls I have made, appointments I took him too, you never look back and regret all the work you do to help your child!
    Several people I have known in the past with children that had similar needs as our son didn’t push for such things and just figured the system would take care of their child in the school. No calls were made to talk to the principal or to the teachers ahead of time and they had such rude awakenings when their children struggled in school.  I couldn’t let this happen to our son. A lot of issues such as these could be avoided with phone calls and teacher meetings ahead of time!
    My advice is to be your child’s voice, be their advocate. You will NEVER regret anything you do for your child if you feel in your heart it is right, even if others disagree. Do not ever assume anything when it comes to the future of your child or assume someone else will take care of it. As parents, we have to make sure it is taken care of! If this means switching Dr’s you may not be comfortable with, making many phone calls, arguing your point over the phone or in person to someone, do it!! We need to be sticklers for details in the assistance you seek out. Take lots of notes and  keep notebooks handy to have all the details from all the past appointments and information you gathered over the years so when you meet with someone else you have it all right there with you to help prove your points. I also read a lot of books and information online to gather as much data as I could on the issues we struggled with.  I joined online forums parents who have kids with these diagnoses where we exchanged information and support. Doing all of this, along with seeking out assistance when needed was so helpful to get to where we are now. I will continue to do this for our son and our family as it benefits all of us. Do not give up, there are so many others out there going through similar things and we can all help and learn from each other! One important point to remember, in conclusion, is that early intervention is the key to success!!

    Kara Huntley, MA, LPC
    Mother of a daughter age 8 and son age 6

    Thursday, January 6, 2011

    IEP Advocacy Resources

    Are you a parent who is overwhelmed by the Individualized Education Plan (IEP) process and are often left confused?  If the answer is yes, then you are not alone. Navigating the world of IEPs in a daunting task for parents and professionals alike.

    In my own attempt to learn more about what parents are entitled to and what they can legally ask for, I stumbled upon The IEP Success Kit at The Special Education Advisor website-

    Although a bit of an investment ($39.95 for members and $49.99 for non-members), this resource is great because a lot of the upfront work is already done for you! The kit comes with a three ring binder with document printouts as well as a CD where you can use templates to type in your child's information. You can simply bring this portable organizational device to meetings and appointments and have everything at your fingertips. The binder is organized in tabs, which include:

    • General information, such as school personnel working with your child, contact information etc.
    • IEP info- for notes, prep sheets, IEP checklists etc
    • Report Cards and Achievement Tests
    • School Assessments, including charts explaining how to interpret scores and the Bell Curve
    • Private Assessments
    • Communication Logs- Sample letters, forms to request meetings, placement changes, non-compliance paperwork etc.
    • Complaints- with links to state complaint forms
    • Settlement Agreements/Hearing Officer Decisions
    • Special Education Definitions, Acronyms, and FAQs 

    Step-by-step, this kit takes you through the whole process-- beginning with requesting an IEP in the first place. It provides IEP background info and clearly defines special education terms that are often left unexplained. If you are a parent or advocate that is often pressed for time and become overwhelmed when piecing together the information you need to prepare for your child's IEP meeting, the IEP Success might be the answer for you!

    Another great resource when it comes to special education law and advocacy is The Wrights are Professors of Law at the William And Mary Law School and their website provides a wealth of information about special education issues, including IEP resources and answers to frequently asked questions.

    Pledge to become organized in the new year and check out these resources to help you get started!


    Tuesday, January 4, 2011

    Improving OUR Communication in 2011: The power of the daily log


    Children and adults on the autism spectrum struggle with communication.  It is a frequently discussed topic but what about those of us that work with these individuals?  We as therapists, teachers, parents, etc. need to improve our own communication amongst each other. Daily logs are great when used and used properly.  There are many things to keep in mind on both sides of the dialogue. 

    Reminders for professionals:
    • Write in the a log:  Even if there isn't much time put a quick note of "Had a great day" or a statement that you will follow up with an email or phone call.  Just to feel that you had some contact with the parents/guardians.
    • Be positive:  So, you have been bitten, kicked and screamed at all day.  There are days like this that are hard to find anything good but try to add something that shows you value their child.  Parents are not wanting to make your life miserable and cringe when reading all the things that went wrong.  Try to think of their child as if he/she were your own and what you would want to hear about. This is not to say you don't discuss the things that went wrong but try to include something that was successful as well.
    • Be specific: Parents want to know what they did that day so when you have the chance add specific information.  Be the voice for the child that is unable to tell about their day.  This allows the parents to feel even more a part of their child's day even if they don't have the verbal abilities.  Even children that can speak they are usually unable to give an accurate description of events.  Having information about the day can help parents work on dialogue at home about what they did at school. 
    • Give updates:  Let the parents know what goals you are working on whether it be behavioral or academic.  What milestones has that child met?  Many times, parents feel 'out of the loop' with where their child is academically.  It is always nice for them to get a reminder or update of what you are working on especially if you hope to have similar objectives for at home.
    Reminders for parents:

    • Changes:  Your time is precious and limited but having a quick message about changes in your child's life is important.  There are often nights that he/she didn't sleep, medication adjustments, family upsets, etc.  These things can hugely affect the child at their school environment.  It is always helpful to know what expect for your child that day and being aware in case things seem a little off that day/week.  This allows the teacher to make adjustments to their expectations for your child.
    • Give updates:  Just as the teachers need to update you, they need to be updated as well.  There are many times that milestones are met in one environment and not in the other.  Let the teacher know if something such as potty training has shown some progress at home so that it can be approached in a similar manner at school.
    • Feedback/Questions:  As a therapist, I want to know what your family needs.  I need to know where the goals fit into your life and what questions you have.  If there is something that you are not understanding regarding therapy, school, etc., open up that dialogue to see if you can gain some clarification. 
    Communication logs can be a simple binder that is sent back and forth with the student; many times clipped into a larger classroom 3-ring notebook.  Each participant can write the date and what information they need to share that day.  There is not a formal system necessary but you can add to the information as needed.  Many teachers also include a place for assignments to be initialed by parents, reading logs, etc. This can be included within the log or in a separate section.  Starting off fresh for the new year is a great way to improve relationships all around and to get to know the individual on the spectrum even more. 


    Sunday, January 2, 2011

    Coulter Sibling Videos

    As Abby mentioned in the previous post, it is SO important to think about the siblings of those with autism and their specific needs. There are a variety of resources out there for siblings and I think the Coulter videos-- 'Understanding Brothers and Sisters on the Autism Spectrum' and 'Understanding Brothers and Sisters with Asperger Disorder' are among the most helpful.

     We've had the privilege to meet the Coulters on a number of occasions throughout the years and they are truly a remarkable family. They began making videos after their son, Drew was diagnosed with Asperger's. What I love about the this particular video series is that siblings get a chance to hear from others with similar circumstances so that they don't feel as alone.

    There are several video options depending on the individual's age and maturity level. One video is designed for kids between the ages of 4-7, one for 7-12 year-olds, and one for siblings ages 12 and above. Siblings candidly talk about both the positives and negatives of growing up with a brother or sister with autism or Asperger's and give real life advice along the way!


    These DVDs provide insight to parents about the unique feelings of the sibling without autism and can serve as a conversation starter with their child. In addition, there is also a fourth video of interviews with mothers and fathers specifically designed for parents.

    Some voices of siblings from the videos quoted in Dan Coulter's article "Autism, Asperger Syndrome and the Siblings":

    "Sometimes when we go in the car, I have to watch my sisters' movies, and it's Barney, Wiggles, or Teletubbies... really little kid shows.. but I have to watch it... because that's what you have to do when you have autistic sisters or brothers."- Alex

    "When he says something and the person that he's talking to doesn't understand him, I can understand him so I tell the person that Jaeden's talking to what he's saying." - Elianah 

    "I get along with him a lot better than I used to when I was about six or seven. We used to fight a lot back then, but now, we help each other out and we're pretty much tight brothers." -DeP 

    Regardless of whether it's through a doll, a video, a book,  a sibling group, or just a chat while riding in the car I think the take home point here is to keep the lines of communication open with siblings and give them a chance to be heard. We don't always know what they are thinking and feeling unless we ask. If you're not sure how to approach it or where to start, I recommend checking out these videos to get some ideas!

    Happy New Year to Everybody!

    - Molly