Category Archives: Parents

Parent input form for IEP meeting

Parent input form

Attending an IEP meeting as a parent can be overwhelming and intimidating. At every meeting, parents have a chance to give input. As a teacher, I have seen parents who on the spot, are not able to express their child’s strengths and challenges.

The graphic organizer I created helps parents plan ahead of time what they want to share. The document includes a section to write in strengths, concerns and remedies.

Teachers can give this form to parents to fill out before the IEP meeting to help them organize their thoughts.

What are some ways you have shared your concerns with the child’s IEP team meeting?

Please follow the link to the TPT store to find the free downloadable form

Book Review: The Reason I jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism

Title of the book: The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. By Naoki Higashida

Summary of the story/book content:

This is a fascinating book written by a 13-year old boy from Japan who experiences autism. His autism impacts him to the point where he is non-verbal. Unlike some of the other books on the market about autism written by parents, or professionals, this first-person account gives insight into what life is like for individuals with autism. As stated in the forward by David Mitchell, “The book goes much further than providing information, however: it offers up proof that locked inside the helpless-seeming autistic body is a mind as curious, subtle and complex as yours, as mine, as anyone’s” 

Even though the author, Naoki is nonverbal, he was able to write the book with the use of an alphabet board. This relatively low tech augmentative communication device is how he communicates in his daily life and he has written some poems as well. My initial reaction when I heard this was concern that they used facilitated communication which is not an evidence based practice. Naoki does not however receive any type of physical assistance or facilitation while using the alphabet board. The book was translated from Japanese to English and is now a best seller around the world. 

Parents and caregivers are now able to hear directly from someone who experiences autism which can give hope, and a deeper understanding of what is needed to support their child on the spectrum. In the past, we have had limited access the first-person accounts on autism besides that of Dr. Temple Grandin. She, as an adult, has become a voice for those who are not able to share their reality. This book is interesting and easy to read as it is from the point of view of a child. What struck me was the absolute profound and deep way this child was able to articulate his experience. Many neuro-typical children with autism are not as adept at sharing with others how they feel as well as Naoki has done. 

Reflections on the ways the individual described in the book demonstrate the characteristics of a person with Autism, as well as his strengths and needs: 

This book is written in a question-answer format and many of the most common questions that many of us have about living with autism are asked and answered. The answers are fairly brief and easy to read and digest. I will share a few of my biggest takeaways from the questions and answers he provided.

Question #13: “Do you prefer to be on your own?” 

Naoki dispels a commonly misunderstood trait of individuals with autism when he describes “No, for people with autism, what we’re anxious about is that were causing trouble for the rest of you, or even getting on your nerves. This is why it’s hard for us to stay around other people. This is why we often end up being left on our own.” He goes on to describe how he likes being around people, but because things don’t go well with people he has gotten used to being alone. He said that when he hears people say that he would prefer to be alone, it makes him feel desperately alone. When I read this, it was such an eye-opening thing to learn. Although he does not speak for all individuals with autism, I have always made the assumption that children with autism want to be left alone. Now that I have learned about the desire to be with others, I will be more cognizant of their deep desire to be around others. I may be more attuned to creating situations for students with autism that go well so they can experience success. 

Question #30 “Why are you too sensitive or insensitive to pain?”

In this answer, Naoki describes how some children with autism will cry out in “pain” when their nails are clipped or have their hair cut while others who have a serious injury will stay calm and not react. He does not believe this has all to do with nerve endings but is more about “inner pain” expressing itself via the body. This again is a very deep answer that I did not expect. He notes that bad memories of these events may come back as flashbacks and become expressed in a way that looks like a negative reaction. The memories of students with autism are not stored in a clear and chronological manner he writes so many of the reactions are based on these fragmented memories coming back to the child. Now that I know this “inner pain” idea I will be more careful in approaching a situation that may “hurt” a child or trigger a bad memory. 

Question #31 “Why are you so picky about what you eat?”

This is a question I have often wanted to know more about for children with autism because I have worked with many children with very restrictive diets. In the book, Naoki states that he does not have issues with having a narrow diet and he acknowledges that trying new foods isn’t just about nutrition but is also about enjoying life. The routine of liking the same food and not giving other foods a chance is the main reason for the picky eating. The child may think all other foods don’t have any taste and discount them as tasteless. Beyond the thought that their sense of taste is messed up, he encouraged us to give children with autism more time to try the foods and to continue to encourage them to eat a variety of foods. 

Question # 33 “Is it difficult for you to choose appropriate clothing?”

I have worked with many children with autism who insist on wearing the same clothing regardless of the weather. If the weather is hot, they still wear the same hoody sweatshirt and have to be encouraged to take it off to cool down their body temperature. Naoki confirms that its very common for children with autism to “forget” to take off or put on layers of clothing based on the weather. For children with autism, he said clothing can be seen as an extension of their bodies almost like an outer shell and they may find it reassuring to stick to the same outfit day in and day out. Protecting themselves from uncertainty and wearing comfy clothing is one way of doing that. Knowing this is so interesting and I never thought of clothing as being reassuring for the child with autism. This information is valuable and can help parents and teachers support the child with autism while being sensitive their unique needs about clothing. 

Final Thoughts:

This book provides so many gems of wisdom and insight for teachers and parents of children who experience autism. Many of the children we work with are unable to express their needs and wants. It is reassuring to learn that even the most seemingly unaware and “in their own world” child is still aware and attending to the life around them. This book gave me greater sensitivity to the deep and unique way children with autism experience and view the world around them. I highly recommend anyone who works with children with autism pick this up for your library as a valuable resource. 

Here is a link to the book: https://www.amazon.com/Reason-Jump-Inner-Thirteen-Year-Old-Autism/dp/081298515X/ref=asc_df_081298515X/?tag=hyprod-20&linkCode=df0&hvadid=312154663427&hvpos=1o1&hvnetw=g&hvrand=13651881292818639831&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9033107&hvtargid=pla-432564544453&psc=1

Book Review Parents guide to High Functioning ASD

Title of the book:

A Parent’s Guide to High-Functioning Autism Spectrum Disorder. How to Meet the Challenges and Help Your Child Thrive

https://www.amazon.com/Parents-High-Functioning-Autism-Spectrum-Disorder/dp/B01K0QDVTU/ref=sr_1_fkmr0_1?keywords=A+Parent’s+Guide+to+High-Functioning+Autism+Spectrum+Disorder%2C+Second&qid=1556511707&s=gateway&sr=8-1-fkmr0

Authors:

Sally Ozonoff, PhD, Geraldine Dawson, PhD, and James C. McPartland, PhD.

A brief synopsis:

This book is a wonderful resource for parents who have children on the Autism Spectrum and is specifically focused on resourcing parents who’s children are high-functioning.

Parents and educators can both benefit from learning about the supports, guidance and information presented in this book.

The book is broken down into two parts:

Part 1: Understand high functioning Autism Spectrum Disorder

This part of the book helps readers understand high functioning autism spectrum disorder.

This part includes chapters on:

  • What is high functioning autism spectrum disorder?
  • The diagnostic process
  • Causes of Autism Spectrum Disorders
  • Treatments for high-functioning Autism Spectrum Disorder

This section gives a great foundational understanding of ASD and what it takes to get diagnosed. The Diagnostic and Statistical Manual was updated in 2013 and this book was written in 2015 so it gives the most current and up-to date information about diagnosis.

Treatment options are clearly stated and both evidence based and emerging practices are briefly reviewed. This book gives a good overview of many of the most commonly used and researched based intervention strategies. Teachers who are new to the field or want to learn more about interventions could benefit form reading this section.


Part 2: Living with high-functioning Autism Spectrum Disorder

This second part of the book discusses living with high-functioning autism spectrum disorder.

This part includes chapters on:

  • Channeling your child’s strengths
  • High-Functioning Autism Spectrum Disorder at home
  • High-Functioning Autism Spectrum Disorder at school
  • Looking ahead: high-functioning Autism Spectrum Disorder in late adolescence and adulthood

The section I enjoyed reading the most was how to channel your child’s strengths. Many children with ASD have special interest and unique talents. The book gives great examples of how parents and teachers can see these traits as assets and skills.

Why would I recommend this book?

I recommend this book because it represents current and best practices for children with high-functioning autism. If a parent is facing a new diagnosis or entering a new chapter in their lives such as adulthood, this book serves as a helpful guide .

The book also has many “real world” examples and vivid stories that are helpful to contextualize high functioning autism. The information is engaging because each section starts with a small vinette to illustrate ways to help kids with ASD relate more comfortably to peers, learn the rules of appropriate behavior and become more successful in school.

This book is formatted and written in a way that is easy to read. It is laid out in an easily digestible format where a parent can jump to a section of the book that is relevant to their needs.

The chapter on high-functioning Autism Spectrum Disorder at school also covers important special education laws pertaining to school supports, accommodations and modifications. Taking the time to read this section will support parents as they face complex rules surrounding special education law and supports.

I hope you get the chance to put this in your professional or parent library!

P.S. I am not an affiliate or get anything from promoting this book. I just wanted to share a great resource with you!

Dr. Temple Grandin-My biggest takeaways from her keynote speech

I got to meet Temple!!! 

Temple Grandin at the US Autism Association keynote address 

Getting the chance to watch Dr. Temple Grandin talk has been a career long dream of mine!

I ran into Dr. Grandin at the airport!!!

When I started working with children with autism back in 1997, her book “Thinking in Pictures” was one of my first introductions to autism.  

Dr. Grandin was one of the first individuals with autism who could articulate what life is like for people on the autism spectrum. Parents and professionals both clamored for her knowledge, expertise and valuable insight. 

Here is a link to the first book I read…

https://www.amazon.com/Thinking-Pictures-Expanded-Life-Autism/dp/0307275655

Temple Grandin’s book 

I just had the amazing opportunity to hear her speak at the US Autism Association! 

Here are the major takeaways I had from her keynote speech: 

  • Limit screen time for children with autism to less than 1 hour per day. She noted that many of the children who could succeed in computer science are sucked in to video games and no longer can access their full potential due to their addiction
  • Parents need to “start letting go”-foster independence from a young age. She likened this to the adult cow who still wants to nurse from the mama cow. She said we need to “wean our children” so they are not dependent on us
  • “don’t over-protect”the child with autism
  • Allow children a multitude of hands on experiences because true learning takes place with hands on experiences not through screens
  • Teach young children how to “wait” and how to “take turns” and use board games as a way to teach these skills
  • Having real jobs are important for young adults with autism starting at age 13 (or so). 
  • Don’t get hung up on the label of autism
  • Focus on the strengths of the child not the deficits-build upon a child’s special interest which could end up leading to a valuable career one day. As an example, a child who is interested in pipes can become a plumber. 
  • Don’t make kids with autism do “baby math” if they excel in math. Allow the child to excel in the area they are gifted in
  • Encourage friendships through shared experiences such as cub scouts, school clubs etc. A shared interest will help build the friendship 
  • There is NO need to disclose autism diagnosis for milder cases due to some prejudice surrounding autism. Instead, tell what you need “those lights give me a headache”
  • Stretch students to grow and don’t overprotect them!
  • Allow for choices

If you were at the conference or have learned from Dr. Grandin yourself, please share what your biggest takeaways are in the comments! 

Here is a link to a youtube video of her (not from the conference I went to). https://www.youtube.com/watch?v=MWePrOuSeSY

Set Up An Independent Work System At Home For Your Child With Autism

Benefits of independent work systems:  

Independent work systems are evidence-based practice for students with autism, but they are very helpful for any child who needs some structure to be able to work on his or her own.

Most children benefit from structure in their environment

My son who started Kindergarten, now has homework so I set up a structured work system so he has somewhere in the house dedicated to completing his homework.

Special education classrooms use a variation of these work systems and supports to help teach independence and provide structure.

♥ I want to share this technique and show how easy this independent work system is to create and use at home. Even if you don’t work with an autism specialist or have in-home Applied Behavior Analysis (ABA) therapist, this is something you can create with a quick trip to the dollar store and moving around some furniture.

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Changes In The DSM-V For Autism

What is the DSM-V? The Diagnostic and Statistical Manual of Mental Disorders (fifth edition) which was just revised in 2013 and written by the American Psychiatric Association. The diagnostic criteria for Autism Spectrum Disorder (ASD) has been modified based on the research literature and clinical experience in the 19 years since the DSM-IV was published in 1994. It is important for teachers to know this because the DSM-5 is used in part, to determine ASD diagnosis and eligibility.

Here is a quote from the DSM-5 to further describe what the DSM-5 is:

“The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) is a classification of mental disorders with associated criteria designed to facilitate more reliable diagnoses of these disorders….

DSM is intended to serve as a practical, functional, and flexible guide for organizing information that can aid in the accurate diagnosis and treatment of mental disorders. It is a tool for clinicians, an essential educational resource for students and practitioners, and a reference for researchers in the field.”

A full pdf link can be found here DSM-5.

Here are the major changes from DSM 4 to DSM 5 in the area of autism:

  • The APA has gotten rid of the sub-categories Pervasive Developmental Disorder (PDD), Rett’s Syndrome and Childhood disintegrative disorder and replaced it with Autism Spectrum Disorder (ASD).
  • Another huge difference is that Asperger’s Syndrome has been removed from the DSM-5. It has been replaced with the term ASD level 1 without language or intellectual impairment. Most professionals are still referring to Asperger’s Syndrome in describing the disability because the term is widely used and understood in the general public.
  • The new diagnostic criteria for ASD have been rearranged into two areas: 1) social communication/interaction, and 2) restricted and repetitive behaviors. The diagnosis will be based on symptoms, currently or by history, in these two areas.

  • DSM-5 has also added a category under restricted, repetitive patterns of behavior, interest or activities called hyper or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment.

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Symptoms must be present in early childhood but may not become fully manifest until social demands exceed capacities. Symptoms need to be functionally impairing and not better described by another DSM-5 diagnosis.

Symptom severity for each of the two areas of diagnostic criteria is now defined. It is based on the level of support required for those symptoms and reflects the impact of co-occurring specifier such as intellectual disabilities, language impairment, medical diagnoses and other behavioral health diagnoses.

The DSM-5 includes a new diagnostic category of Social Communication Disorder that describes children with social difficulty and pragmatic language differences that impact comprehension, production and awareness in conversation that is not caused by delayed cognition or other language delays. This diagnosis looks a lot like Asperger’s Syndrome to most professionals.

Hopefully this brief overview of the changes was helpful for teachers and parents who are on the diagnois journey.

Mealtime Without Drama- 5 tips for kids with autism

I went to a great local training where Dr. Ashley Brimager, a clinical psychologist shared some tips for creating success at dinner time. She referenced support strategies from Dr. Marsha Linehan who created Dialectical Behavior Therapy. Check out more about DBT here: DBT therapy Information . 

Long Term Goal:

The goal is for children to learn to internalize healthy eating habits and develop a healthy relationship with food.

food healthy red summer

Photo by Pixabay on Pexels.com

What does “drama” look like in your home at mealtime?

Some parents have shared: food refusals, crying, acting out, meltdowns, throwing food etc.

Be Proactive:

Be mindful of the “setting events” before, during and after dinner. Make sure your child is not too hungry or too full when you attempt dinner routine. Do the best you can and every meal is a chance to work on creating harmonious mealtimes where kids work towards the long-term goal.

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Visual Support : Picture Schedule For Students With Autism

 

Pic Schedule

An example of a picture schedule for a Kindergarten student 

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An example of a visual schedule for a 5th grade student 

What is a picture schedule? A picture schedule is a visual representation of what the student will encounter through the day or within a specific task. Continue reading