ASD: To Tell Or Not To Tell

Over the last few years, I have had several parents ask me, "Should I tell my child that he/she has autism?" BAM!  Just like that, waiting for my answer.

In my first few years as an SLP, I remember thinking that it was a fairly cut and dry "yes." I felt that the students deserved the right to know why they thought, acted, and felt the way they did, and that it was unfair for them to be left in the dark about it.  Wondering.  Curious.  Confused.  Scared.

But now things are different.  I have a different perspective.  I have had more conversations with others.  I have more experiences.

Each family is unique and at a different place in their journey.  There is no rehearsed conversation that can be had.  In fact, there are so many other dynamics that come in to play other than the conversation.  It's hard to know what's happening behind closed doors. It's hard to know if the family needs additional supports outside of the sped team.  It's hard to know the current relationship between the parents and child.

Just a few months ago, a parent approached me with the same question.  I didn't give her a concrete answer but rather shared with her that it was her decision to make, it would be the right one, and that I would support it, whatever it was.  She paused for a few seconds, smiled, and thanked me.  I told her that I would be happy to provide her with a list of books that she may find helpful, so I did, and I thought I would share them so that you have a resource to share at your finger tips (or rather, a few clicks of your computer keys).

Different Like Me by Jennifer Elder
In this book, eight-year-old Quinn has AS.  He shares about historical figures that also had AS.  The book uses child-friendly language and focuses on inspirational figures in the areas of science, math, art, literature, philosophy, and comedy.

My Autism Book: A Child's Guide to Their Autism Spectrum Diagnosis by Tamar Levi
This book is written by a doctor and children's author.  It is geared for children ages 5+ and uses colorful pictures, from a child's perspective, to help parents explain autism in a positive way.

Can I Tell You About Asperger's Syndrome by Jude Welton
Adam, the character in this book, has Asperger's Syndrome (AS).  He shares what AS is, how it feels, and struggles that people with AS have.  He also shares about how others can help by focusing on talents and appreciating differences.

The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents) by Elizabeth Verdick and Elizabeth Reeve
This book is a helpful resource for children who have autism and their parents; it is meant to be to be read together.  It tackles questions children have and provides strategies for communication, making friends, and being successful in school.  There are a number of areas highlighted such as diet, hygiene, sleep, etc. to support children, their family, and their team.  There is also a section for parents that offers additional information.

Autism, The Invisible Cord: A Sibling's Diary by Barbara Cain

Jenny is a 14-year-old girl who has a younger brother with autism.  She shares what autism is, her worries, and her obstacles living with a sibling with autism.  

Online Stories: A Small Little Treasure

We LOVE books.  We LOVE stories.  We LOVE sharing our favorite books and stories.  (If you aren't familiar with our Book of the Week, check them out!  There are lots of ideas for you!)  We use them constantly in therapy whether with articulation, language, pragmatics, and even fluency.  We use them A LOT.  Sometimes we enjoy taking a break from reading and treating our students to other narrators, which is why we like Storyline Online.  It includes approximately 30 online books; you will recognize many of the titles if you are a book lover as well!

Storytime Online also provides about 100 books online, some of which link to Storyline Online.

We hope you find these sites as awesomely useful as we do!

Creating A Calming Plan

This school year is going to be crazy.  It's going to be good.  It's going to be crazy good!  I know that I am going to learn so much as I transition from speech-language to a center-based ASD  program.  I'll be using every single tool I have in my tool box and relying on my fantastic colleagues.  I was becoming so overwhelmed with where to start, so I will be starting with this...

I want to start of the year being proactive.  I have an area in my room designated for relaxation and calming.  There is also a larger room right across the hallway for students to access at any time just for calming.  (I will get pictures posted in the next several weeks.  The other ASD teacher and I are working like crazy to get our new rooms set up!)  These areas will be marked by this sign:

Consistency is key!  We are asking the teachers to find a small area (a desk, a carpet square, whatever is available) to post this same sign.  We want the students to know that it is not a negative area but a place for them to self regulate and refocus.

What are they going to do when they are in their calming area?  Well, it depends on several factors including the antecedent and the level of escalation.  (The goal is ALWAYS to support students before the problem can't be resolved with a calming break. ) That being said, I am focusing on the problems or situations that can be supported with a calming plan.  It's simple, personalized, and so important!

During the first week of school, I will be demonstrating nine different calming strategies.  I have created a poster with 1-4 step directions on how to complete each one.  

The students will have the opportunity to try each strategy and rate it on a scale of 1-5.

Based on the students' rating, they will be able to select the strategies that work best for them including one breathing strategy, one pressure strategy, and an additional component.  Using small icons, they will place them on a small visual support with velcro, making sure that the visual support is not too distracting.

These supports are approximately 1/3 of an sheet of paper so that they are big enough for the students to manipulate but not too big to draw attention.  Some of the students who participated in my social skills class last year used several of the strategies, and they were very helpful.  With enough practice, they were able to use a visual support and use them when becoming agitated.  They sometimes needed a directive to take a calming break, which is why I will also be using calming cards:

I will be giving the classroom teachers these cards as well, again for consistency.

I am so excited to get this activity started with my students...AFTER I finish enjoying my last three weeks of summer break!  You can find it here at our TPT store.

If you would like to win a copy, please enter by leaving a comment below! (What calming strategy have you found to be the most helpful for your students?)

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Why Use Interactive Books?

Recently I have become somewhat obsessed with interactive books.  Well not exactly recently unless 11 years ago counts.  Maybe it's more of a re-obsession.   Why?  It's easy!  I love that they allow children to fold, press, touch, search, sing, and chant.  There is a wide variety of interactive books, from coloring books to hidden object books, from touch and feel books to interactive notebooks, from pop-up books to eBooks, and the list goes on and on.  Here are four main reasons why I love interactive books!

Interactive books accommodate multiple learning styles at the same time.  Depending on the type of interactive book you use, you can incorporate several different types of learning styles to maximize learning. Some of the most common types of styles found in interactive books include visual (using pictures/images and tapping into spatial awareness), aural (using sound/music), verbal (using words through written and spoken expression), physical (using movement and touch), and social (learning in groups or with others).  While there are additional learning styles, these appear to be the most commonly found when using interactive books.  

Interactive books accommodate multiple skills at the same time.  Being efficient with larger groups in a short amount of time is always challenging.  I feel productive when I am able to target a goal for each student at the same time without down time.  While one student may be working on s-blends, another student may be working on categorization within the book, and it all works!  Take the "I Spy" books for example.  While one student "spies" trains, another student may need to "spy" two other objects in the picture that provide transportation. 

Interactive books encourage participation by the reader.  Maybe the interactive part of the whole concept is a dead giveaway, but students must interact with the book, becoming an active participant instead of passive participant.  

Interactive books are engaging.  When children are engaged, they are required to think and make choices, creating a more meaningful learning experience.  

My obsession has spilled over in to my evenings the last week and a half...I just finished creating two interactive language books for students in grades K-3, students with language deficits, and  DCD groups.  My colleague and I are in putting them together to use with our groups next week!  

Let's Build A Snowman!
This 11-page interactive book targets basic concepts, following directions, basic comprehension, and answering “WH” questions. It lends itself to work with students with a variety of needs. There is blank sheet with a frame at the end of this download for students to draw their own snowman. 

Sweet Treat Directions
This 12-page interactive book targets following directions using sequential concepts and physical features. The directions can be modified to include one or two-step directions by leaving out part of the written prompt on each page. There is a blank sheet with a frame at the end of this download for students to draw their favorite winter treat. 

You can check them out here at our TpT store.

Looking for additional resources?  Check out these gems!

MightBook.com - This site is filled with songs, interactive books, beginning reading activities, arts, science, and the list goes on and on!
Listen and Read: Reading Activities for Early Learners - Supported by Scholastic, this site provides 54 nonfiction read-along books. 
MeeGenius - This site has free online audio books for children.  They can listen to them or read them aloud.  The site allows for students to have words highlighted as they read.  
National Geographic Young Explorer - This site is a great science resource where students can listen to audio readings of magazines.  The rate is slower and the words are highlighted.  
Highlights Kids Story Player - This site features text, audio, and pictures with prose and poetry.  

A Little Social Thinking® Support For Your Classroom

Over the last five years, we have embraced Michelle Garcia Winner's Social Thinking® vocabulary in our groups.  Every year, we start at square one with our social skills groups with expected/unexpected behaviors, thoughts/feelings, and keeping brains/bodies in the group.  We use a variety of activities over the course of the first few weeks to really drive the concepts home and wanted to share a free flowchart/visual that we have used in our groups.  We use the graphic organizer to show how all of the above-mentioned skills are dependent on each other.  We hope that you find it useful!

You can find it at our TpT store.  Please let us know how it works for you.  We are always looking to improve on our ideas!

Visual Strategy for Advocacy!

This week is our first week of school and we are just getting settled our new students and schedule. For our 4th grade students it's a whole new staff and building to get used to, but this week we are already meeting them and talking about how they can advocate for their needs. We work with most of our students to verbally advocate for their needs but at times they need a nonverbal or visual way to communicate needs.  Thus this year, we developed some advocacy quick-cards for students of all skill levels to let adults or peers know their needs. We are hoping they help when students are struggling to get words out, when a AAC device breaks down, or they are feeling too shy to directly ask the teacher for help. These advocacy cards can be laminated and taped to desks and binders or put on a ring for on the go use. Here is a preview:

 

We are finding that our students love the bright colors and we hope you do too! You can get yours here at our TPT store. 

Preparing for a Tonsillectomy and Adenoidectomy

Tomorrow.  Finally.  Those stinkin' tonsils and adenoids will be gone, and  I cannot wait.  Not mine, but my daughter's.  There is a part of me that is dreading the recovery process and seeing my little girl in pain, but I have to think long-term.  It's not a major surgery by any means, but it still requires general anesthesia.  I'm a mom.  I worry…a lot.  It seems to come with the territory.

Earlier this spring, my husband and I noticed our daughter always sounded like she had a cold (hyponasal) and on occasion, she sounded like she was talking through her nose (hypernasal).  She always breathed through her mouth (mouth breathing), but when we would ask if her she had a stuffy nose, she would wrinkle her nose and start sniffing quickly to show us that she had no nasal congestion.  

This summer during swimming lessons, we noticed our daughter's attention consistently waned, and she would have to be redacted by her instructors.  Any typical three-year-old needs redirection, but this just wasn't our daughter.   It broke our heart.  We wanted everyone to see the beautiful, little girl that we knew she was.  That very same night, I sat in her bedroom, watching her struggle to sleep.  She would quit breathing for 10+ seconds, gasp for air, reposition herself, and start the process over again.  For hours.  It was hard to watch, and even when I tried to reposition her, elevate her head, or whatever I could think of, nothing worked.  This same scenario happened night after night.  I took several videos on my phone over several weeks and then sat down to email our pediatrician.

Our pediatrician, who we LOVE, asked several questions, and after seeing less than one minute of the video, immediately stated, matter-of-factly, "She has obstructive sleep apnea."  Exactly as I thought (without the medical background, of course).  I was relieved.  She referred us to an ENT (Ear-Nose-Throat doctor/laryngologist), and a month later, we were scheduling surgery for a Tonsillectomy and Adenoidectomy (T & A).   

This week, I have been trying to figure out how to explain to our daughter what will be happening.  I don't want to scare her, but I don't want to blindside her either.  I feel like I'm walking a fine line.  I decided to share with her that her doctor is going to do some work in her throat so that she can breath better.  I told her that her throat will hurt for a while, but spun it so that she knew there would be lots of popsicles to eat.  We have talked about it every day, at least twice.  Now she says, "I know mommy.  You already told me that, remember?"  

So here I sit.  I should be sleeping, but I can't.  Maybe it's because I'm distracted by blogging.  Maybe it's because I've let myself stay up way too late over the summer.  Maybe it's because I'm worried about my little girl.  Maybe it's a combination of all of the above.  Whatever the reason, I want to provide a little bit more information about tonsils and adenoids.  I'll keep in short and sweet so you don't have to scroll through page after page of information.

What are tonsils and adenoids?

Tonsils are two masses of tissue that are found on both sides in the back of the throat, and adenoids are found behind the nose and soft palate (the roof of your mouth).  They are situated higher in the throat and cannot be seen without the use of an instrument.  Tonsils and adenoids function to trap bacteria and viruses from entering your body. 

What are signs of enlarged tonsils and/or adenoids?

- frequent ear infections

- sore throat

- difficulty swallowing

- difficulty breathing through the nose

- mouth breathing

- obstructive sleep apnea

- snoring

- bad breath

What should you do if you have concerns?

Contact your pediatrician who will then determine whether a referral to an ENT is necessary, who will then determine the proper care for your child.

What happens during a tonsillectomy and adenoidectomy?

T & A surgery is one of the most common performed in the United States.  I have read on several different sites that more than 400,000 surgeries are performed each year.  General anesthesia is given, and the process should take anywhere from 20-30 minutes.  The tonsils and adenoids are removed through the mouth and then surgeon controls the bleeding.

What happens after surgery?

We haven't experienced this part yet, which is the part that I am NOT looking forward to.  Who would, right?  Nearly all of the sites I have read (and I have read a lot!) share that you will be with your child as he/she wakes up.  Your child will need to remain in the hospital for several hours to monitor his/her vitals and make sure they are stable.  Your child will also be encouraged to drink.  Most often children will go home the say day as surgery.  A few children will need to stay overnight for observation, especially if they are three or younger due to concerns with dehydration.  

What happens at home?

This part will definitely be a to-be-continued!

If you're looking for a little more information, KidsHealth offers a user-friendly resource with both audio and visuals. 

Additional Resources:

Children's Hospital of Pittsburgh

Boston Children's Hospital

aboutkidshealth

State Fair Hearing Health

 

Today the Minnesota State Fair opened and it will run (August 21-September 1). Anyone who has been to the Great Minnesota Get Together understands we enjoy lots of fried food on a stick. Over the past couple of years Minnesota Academy of Audiology, has offered hearing aid batteries on a stick, to remind you to keep hearing aids in great working condition and to “Stick up for good hearing.” The MAA’s booth  offers screenings for video otoscopy and for hearing. They also many years give away earplugs for noise protection (think grandstand music), and some information about noise induced hearing loss. If you are interested in checking out their booth, it is located in the KARE 11 health fair area at the southwest corner of Dan Patch Avenue and Cooper Street. We hope you enjoy the fair, we know we will!!

BIKE HELMET SAFETY FOR YOUR CHILD: Follow These Five Easy Steps

I'm a big fan of the Tour (Tour de France), and every July, I get amped up! I'm in complete awe of the athletes' strength and level of physical fitness.  One of my race favorites pulled out of the race after he went down in a crash in one of the early stages with a knee injury.  In fact, many of the major injuries include fractures of the extremities, not head injuries. Why?  Several reasons, two of which include properly fitted helmets and the obvious: the roads are cleared of vehicles for the cyclists.  This post is clearly not about the Tour de France, but it was my segue into talking about proper fit of your child's bike helmet.

This summer, my daughter started riding her bike, and my husband and I wanted to make sure she was safe, which meant finding the proper helmet.  She had to have a princess bike helmet to match her pink princess bike.  (Coordinating at the age of three?  I could be in trouble in another 10 years!)  It cost a little more than $20, but the peace of mind it has given us is priceless, considering she's already had her share of falls.  Ever since she started riding her bike, I've been paying more attention to other kids and their helmets (or lack thereof) because I have seen some craziness. Take, for example, the teen-age boy riding on a much-too-small-of-a-bike on a busy road while texting on his phone and flipping his Bieber-like hair … who was NOT wearing a helmet.  Several weeks ago, a friend posted a picture of her son riding his bike, and while he was wearing a helmet, it was so ill-fitted that the front of his helmet started past his hairline. 

According to Centers for Disease Control and Prevention, a survey conducted in 2001-2003 revealed only 48% of children ages 4-15 wore bike helmets, and that number decreased as children got older.  The CDC also reported that approximately 26,000 bicycle-injuries of children and adolescents were traumatic brain injuries (http://www.cdc.gov).  Those are very scary statistics.

A 2012 study from the WV Medical Journal took a look at injuries of children ages 14 and younger, focusing on the differences between children who wore a helmet and children who did not wear a helmet.  Their study looked at all pediatric patients treated at the West Virginia Trauma System who were involved in bicycle crashes from 2008 through 2010. They indicated that their findings were similar to other studies (Bergenstal et al. 2012):

• Concussions occurred in 19.4% of helmeted riders and 37.4% of un-helmeted riders.
• Skull fractures occurred in 3.2% of helmeted riders and 17.4% of un-helmeted riders.
• Intra-cranial hemorrhaging occurred in 0% of helmeted riders and 17.4% of un-helmeted riders.
• Zero deaths occurred in helmeted riders, and 2 deaths occurred in un-helmeted riders.

So how should a child's bike helmet fit?  Children's Hospital Los Angeles  and The National Highway Traffic Safety Administration  both offer easy steps to assure proper fit.

1. Size - The helmet should fit snuggly and should not move from side to side.  Sizing pads come with newer helmets to help secure the fit, and extra pads can be removed as your child's head grows.  If the helmet has a universal fit ring instead of pads, the ring can be adjusted to fit your child's head.

2. Position - The helmet should fit low on your child's forehead, allowing for only one or two-figer widths above the eyebrow.  

3. Side Straps - The left and right straps should meet right below your child's ears to form a V-shape under and slightly in front of the years.  Secure the side straps if possible to prevent slipping.

4. Chin Straps - Center the left buckle under the chin.  Buckle the strap and tighten until it is snug.  No more than one finger should fit under the strap.

5. Final Fit 

• Does the helmet fit correctly?  You can check by asking your child to open his/her mouth wide.  In doing so, the helmet should pull down on his/her head.  If you find that the helmet is not fitting correctly, check the tightness of the chin straps.
• Does the helmet lean forward into your child's eyes?  Is there only one or two fingers between the helmet and your child's eyebrows?  If not, then tighten the side straps and chin straps. 
• Does the helmet move while your child shakes his/her head?  If so, check the sizing pads or universal fit ring.
• Roll the rubber band down to the buckle.  All four straps should go through the rubber band.

This quick how-to video may help you to figure out the correct fit for your child's helmet.

Children grow, so it's undeniable that they will also outgrow their helmets. You will need replace your child's helmet if his/her head has outgrown the helmet size, your child has crashed in the helmet, or it has been dropped on a hard surface such as concrete as it may no longer provide the correct protection. It may seem "nit-picky" and "petty" to consider these factors, but then you must also consider the alternative: a traumatic brain injury (TBI).  Even with a mild TBI, children may experience life-long difficulties with attending, working memory, processing speed, organization, and behaviors.   I know this because I suffered from a TBI 16 years ago, and the effects still challenge me, but that's another post on another day.

Sources:

Bergenstal J, Davis S., Sikora R., Paulson D., Whiteman C.  "Pediatric Bicycle Prevention and the Effect of Helmet Use: The West Virginia Experience."  Center for Diseases Control and Prevention. West Virginia Medical Journal, n.d.  Web.  13 July 2014.

"Bicycle Helmets Save Medical Costs for Children."  Children's Safety Network.  n.p.,  n.d. Web. 13 July 2014.

Franco, Cheryl.  "Bicycle Helmets: Getting the Right Fit."  Children's Hospital Los Angeles.  n.p.,  n.d.  Web.  13 July 2014.

"Easy Steps to Properly Fit a Bicycle Helmet."  NHTSA.  n.p., Sept. 2016.  Web.  13 July 2014.

Autism Meet Up and Support Groups

Raising awareness for autism all year round, especially in April has been something that we have been passionate about for years.  We do this by educating teachers, paraprofessionals, and peers.  We participate in fundraisers, autism walks, and give presentations.  We talk about what autism is, and what it isn't.  We talk about difficulty with social communication.  We talk about how students with autism   often have difficulty with their "friendship radar," and how they want friends just as much as neuro-typical peers.  We stress how they (peers) can be a friend to someone who has autism and give examples of how to do so.  We focus so much on the support in school because that is the nature of our role.  But what about supports outside of the school environment?  I decided to take a quick look at local support groups and found some great resources:

MN Autism Friends Unite is for both parents and people with autism spectrum disorders to meet up for fun and affordable outings in the community.  

TAG-We're It! Tween & Teen Autism Group is a social group for parents who have tweens and teens on the autism spectrum, focusing primarily on ages 7-17.  Children and parents develop social skills and friendships through social activities.

Twin Cities Spectrum Kids Meetup Group is a meet up group for parents and kids who have social and emotional needs but not necessarily autism specific.  The group focuses on forming peer relationships so that the kids can be "productive, caring, respectful, and self-confident citizens."  In addition, parents have an opportunity to learn and share about current issues, research, etc. while participating in social outings.

Spectrum Connections is a social club for pre-teens, teens, and young adults who are on the spectrum.  It is designed to help make new friends in a safe and friendly environment.  Parents are welcome as well.

Ausome Family is an online resource that highlights people, groups, organizations, and ideas to "raise awareness, inspire acceptance and/or improve the quality of life for individuals on the autism spectrum."  The website includes a resource directory and calendar of events for all things autism.

Autism Speaks Family Reference Guide

Autismspeaks.org has a gather information about goods and services for students and adults with autism and their families. Services include camps, therapies, and products. We love this because it covers services throughout the United State. Follow the link here to look.