Author, Speaker, Autism Expert

New to Autism? How to Cope

By Chantal Sicile-Kira |  March 16th, 2011 |  Print Print  | 

Recently, I posted a blog on the Autism College website entitled : “My child has just been diagnosed with autism, how do I cope with this?” Parents new to the world of autism usually have a tough time after getting the diagnosis. Parents learning to cope  may find the following tips helpful:

• First, acknowledge your feelings, and allow yourself to feel the emotions that are there. These emotions, may come back time and again, but you will learn to cope.

• Know that the emotions you feel as a parent of a child with autism, has been compared to the stages of grief that  person goes through when mourning the death of a loved one.

• Recognize what you are feeling and try to use those emotions to your benefit. If you are angry, use that energy to find out all you can and advocate for your child (just be careful not to take out your anger on those that are there to help you). If you are feeling isolated, join a support group. If you are feeling powerless, go on the internet and do some research to learn about what options you have for your child, or which advocacy group exists in your state (every state has one) for the developmentally disabled community.

• Keep in mind you are not mourning the death of your child, you are mourning the loss of your expectations. The child you have may not be the child you were expecting, but he still needs you and loves you.

• Reach out and find an autism support group in your area that can help you feel less isolated and can help you with information.

• Find out all you can that can help your child so you can make the right choices. Empower yourself with the knowledge you need to help your child the best way that you can.

• Take care of your self. Just like in an airplane where the flight attendant instructs you in case of an accident, to put the oxygen mask on yourself before you help your child; you come first. If you don’t take care of yourself, you won’t be able to help your child.

At Autism College, we can help you as we help other parents coping with autism. Our Parent Empowerment Course can assist with some information such as how to know what will help your child, and the affects of autism on siblings and grandparents. Our free Library will  grow and we are adding information you can use. Two of my books might be really helpful to you at this time: Autism Spectrum Disorders (an  ASA Book of the Year) and 41 Things to Know About Autism.

 

“Geek Dad: Awesomely Geeky Projects and Activites for Dads and Kids to Share” Free copy available

By Chantal Sicile-Kira |  December 13th, 2010 |  Print Print  | 

Geek Dad book

I’m not trying to out any Geeky moms or Geeky dads for that matter (notice I haven’t mentioned autism or Asperger’s Syndrome). But I couldn’t resist posting this – my publisher offered to send a free book to  a person of my choosing -  and I thought it would make a great present for winter break – lots of time to try stuff out, right?

I am not considered a Geek, yet I have always loved cool activities to do with my kids. I have always completed activities, they just never looked or turned out the way they were supposed to.  Let’s face it, I’ve always been a geek wannabee.  This book, Geek Dad: Awesomely Geeky Projects and Activities for Dads and Kids to Share by Ken Denmead speaks to the inner geek in all of us. Ken is the editor of GeekDad, a blog on Wired magazine’s Web site.  A professional civil engineer, he lives near San Francisco with his two sons, who are both geeks in training.

Here is a great book and I can send you a free copy. Just write a comment below (or send me a private email if you are too shy) within the next 48 hours, and I will pick one of you to get a copy from the publisher for free.

Meanwhile, here is  an  activity from the book – making coloring pages:

Because there are levels to artistic ability and interest, I’ll show you two different coloring pages you can make. First, the classic dot-to-dot, then coloring sheets. They are all made from images you can find online or scan into your computer from sources at home.

Dot-to-Dot Coloring Page

To start, you have to pick the image you want to turn into the coloring page. For dot-to-dots, it’s going to be a lot easier to select simple images, though if you’re patient and want more detail, you can go for the gusto with more detailed pictures. But dot-to-dots are great for younger kids who are learning about staying within the borders. And they love to be amazed by what they can create by drawing a series of lines between dots.

For this example, we’re going really simple—an image of the sigil of the Rebel Alliance.

(Advisory: If you are reasonably experienced with graphics software and know what a layer is, you can skip down a couple of paragraphs to the one that starts “Select a pen . . .”.)

Assuming you’re a geek, we are going to figure you have some manner of graphics software, probably for touching up pictures from your digital camera. Common (and pretty good) examples of such software include Photoshop Elements (the cheaper, easier-to-use version of the industry standard Photoshop) available on Mac or PC; Pixelmator for the Mac; or GIMP, which works on PC, Mac, or Linux and is FREE FREE FREE. Maybe you haven’t played around with the software that much. If that’s the case, here’s a quick lesson about the first feature you’re going to use.

A layer is a standard concept in image editing software. Conceptually, it’s very simple. Imagine if you took a printed picture and laid a piece of tracing paper over it, and then copied the features by hand on that tracing paper. Well, a layer is just like tracing paper, only it works digitally on the computer, and you can have as many of them as you want.

Step 1: For this project, you open your base image in the editing software of your choice. Then you  add a layer. Most of these pieces of software have a menu actually called “Layer” from which you can “Add a Layer.” Once you’ve done that, there is a perfectly transparent layer of digital tracing paper on top of your image, upon which you can now trace, without affecting the original picture.

Step 2: Select a pen or pencil tool and a fairly small brush size to make your dots with. Draw black dots all around the edges of the image, at relatively even intervals. Straight lines need only one dot at either end. Curves need more so that, when they are connected, they will better re-create the curve.

Step 3: These programs should have a separate control window that shows all the layers in the current project. From this window, you can now “turn off” the layer with the original image on it so that you see only the dots.

Step 4: If you want to go all the way, you can also use the program’s text feature to add numbers next to each dot to give your artist a sequence to follow. Or you can just save this file and print as many of them as your kids want to color, letting them be creative and decide how to connect the dots.

Coloring Book Pages

Obviously, older kids and those with more advanced coloring skills are going to be hankering for something a bit more challenging than connect-the-dots. What’s great is that these graphics programs have filters that let you kick out coloring pages by the ream with only a couple of clicks. They require even less work than the dot-to-dots.

Pick an image. For this example, I used a snapshot I took of my classic Nauga (http://www.nauga.com/promoitems_nauga.html) in my office. I opened the image in Pixelmator and then used “Filter-Stylize-Line Overlay” to automatically find the edges in the image and drop everything else out, making a perfect coloring sheet (there are settings you can tweak to get it “just right”).

In Photoshop Elements, the process is nearly as easy. Open the image, and use “Filter-Stylize-Find Edges.” Then use “Enhance-Convert to Black-and–White” to drop out the colors, and you have much the same effect.

In GIMP, you can try “Colors-Desaturate,” then ”Filters-Edge Detect-Neon” and “Colors-Invert” to get a similar effect. You may need to play with some settings to get an optimal result (and you can save those settings for future uses). GIMP is just as powerful at the other programs in many ways, but it is not quite as user-friendly, so there’s a bit more of a learning curve.

Once you have the technique down, you can whip these out en masse and build your kids (or get your kids to build) their own coloring books, using images they find online (Google Image Search is excellent for this, though make sure you keep an eye out for inappropriate content; or try the Web sites for the cartoon shows they like—Disney or Nickelodeon) or scans from other books or sources.

One other way to do this—with slightly less creativity (and therefore less geek factor) but without the need for special software—is the Coloring Page Maker at the Crayola Crayons Web site: http://play-zone.crayola.com/.

If the kids are still alive at five…..

By Chantal Sicile-Kira |  December 6th, 2010 |  Print Print  | 

I say, if the kids are still alive at five, I've done my job.

It’s been one of those days -  support person can’t come in because her puppy is sick and I’ve got tons to do.  Meanwhile, I find suspicious stains and matter on the floor and rug, and I’m not sure who is responsible for them (we do have a cat and a dog….). It takes a good hour to clean it up, because the matter  somehow  ended up on Jeremy shoes, which of course he then tracked all over the house.  I’m still finding stains hours later. Jeremy edits his homework assignment, but I can’t seem to upload it on his college blackboard assignment page. I get an extremely rude email from a person (who could use some tips from Miss Manners) demanding immediate  information  about a Taskforce I am co-chairing  and a California insurance bill (Just FYI – I’m not in charge of updating the Senate Autism Committee’s website where the Taskforce information is supposed to be posted, in case anyone was wondering… ).

In the middle of all this, Jeremy walks by where I am sitting as I try  to  resolve a problem on his computer. He gently drops the above postcard (which is usually taped up on our refrigerator) near me. Yup, Jeremy, it’s one of those days. Thanks for acknowledging it.

But there’s always tomorrow…..

1001 Tips for Parents of Autistic Boys and Autistic Girls.

By Chantal Sicile-Kira |  November 24th, 2010 |  Print Print  | 

Those who have heard me speak at conferences or who read my books know that I love information that is usable. When it comes to books on autism, practical rules. Two books have just been published that are full of useful tidbits that parents will appreciate, and these are 1001 Tips for Parents of Autistic Girls by Tony Lyons, and 1001 Tips for Parents of Autistic Boys by Ken Siri.

Like any book on autism, some of the tips in these books will apply to your child and your situation, and others may not. But with 1001 tips there are many to choose from. The book for parents of autistic girls is a great resource, as lately there have been a few books published on Aspie girls but nothing really for those on the other parts of the spectrum. When it comes to puberty and the teen years, parents of girls need information about how to handle the changes puberty brings (I think you get the picture).

On Thanksgiving Eve, I am grateful for the autism community of parents, professionals and support staff who have shared their wisdom as we search for enlightenment. In honor of the release of these two 1001 Tips  for Parents, I’m sharing my favorite tips for making it through the holiday season from my recent Psychology Today blog. Parents, you may find these useful in making it through the upcoming month and a half. I know how difficult it can be.

(If these tips don’t work, remember the three V’s – valium, vodka, vacation, but not if you are driving and certainly not for your child. – Disclaimer: The information appearing between these parenthesis was written to incite laughter, and is not to be taken as medical advice, please check with your doctor before self-medicating).

Why the holidays are so difficult for families with autism and what can help

Often parents in the autism community will joke that we become more religious during the holiday season that begins with Thanksgiving: we pray our children will behave while we are visiting relatives, we pray they will show interest in their gifts (and not just the ribbon), we pray they will sit at the dinner table, we pray they won’t hit the relative who tries to kiss them, and above all – we pray that we will have the strength to politely ignore the judgments passed upon us and our ‘misbehaving’ children.

Here are some areas of difficulties for children on the spectrum and their families during the holiday season, from my book, 41 Things to Know About Autism, published earlier this year :

The stores are full of noise, lights, lots of people, and winter holiday music that can create major overwhelm for those with sensory processing challenges.
• Social requirements such as relatives wanting a hug or a kiss that can fell painful.
• Holiday dinners where they are expected to try foods or sit for long periods of time with so many people and so much commotion.
• Many children are mesmerized by the colors and textures of the ribbon and wrapping paper and do not open the present but stim (get engrossed and play) with the wrapping
• The child does not understand personal space or have safety notions and so may run around the house or try to play with something breakable.
• Relatives may think that the child is misbehaving, and may try to discipline the child, not realizing that the child really can’t help it, and that discipline is not helpful when it comes to sensory overload and high anxiety.
• Parents have a difficult time because they know there are certain expectations of behavior that relatives and friends have and that the child cannot fulfill.

What can you do? With some preparation, planning and information sharing, the holidays can be less stressful and more enjoyable. Here are some tips on how to prepare your friends and relatives whom you will be visiting:

• Explain the difficulties your child has with the holiday dinner environment, decorations, noise etc.
• Let them know he is not just misbehaving, and that he is learning little by little to handle these situations
• Explain about dietary challenges so they don’t expect him to eat what everyone else is eating.
• Ask if there is a quiet room (child -proof in terms of décor) where your child can retreat for some quiet time to escape the commotion and noise.
• Send them a short but sweet letter or email ahead of time explaining why your child acts the way he does and the difficulties of the holidays form his point of view. They will have a better understanding of why she won’t wear a dress or he won’t wear a necktie, and why as more and more people start arriving, he tries to escape the room.

To prepare your child:

• Make a social stories book about what will be happening and the behavioral expectations. If possible include photos of who he will be seeing, the house  decorated during last year’s holiday season. If he is going to church, do the same for that environment.
• Play some of the music he may be hearing at this holiday season.
• Practice unwrapping presents – wrap a bunch of boxes up with favorite treats inside and have him open them to get to them.
• Practice a handshake if he can tolerate that.
• Write rules together – ie how long he thinks he can tolerate sitting at table, and the expected behavior.

On the day of the holiday celebration:

• Remind your child of the agreed upon rules
• Pack some little toys he can play with in his lap at the dinner table
• Bring some foods he can eat, especially if he is on a specific diet.
• Arrive early so that the noise level builds up slowly for him.
• Do not let the expectations of others ruin your day. Do what you need to do to make it as comfortable as possible for you and your child.

Holidays can be difficult because of all the expectations, as well as the sensory challenges, but with planning and information sharing the holidays can be more enjoyable for all.

Putting Yourself First

By Chantal Sicile-Kira |  November 7th, 2010 |  Print Print  | 

This past week, I finally made it to the RoadRunner store to buy a pair of running shoes. I have not been getting my normal amount of exercise (walking or elliptical, plus core strengthening) and I was feeling it. Lethargic, less energy and putting on weight. And when I did exercise, my sneakers were so worn I was worried about my back and left right knee (go ahead and laugh if you are under 35, you’ll soon understand what I’m talking about….). I knew it had been a while since I had bought a new pair – but when I got to the checkout – I was told my current sneakers were purchased in July 2009. YIKES!

How did I let exercise – the one thing that keeps me healthy and sane (OK, maybe not sane but at least behaving appropriately in public settings) slide off my schedule?

Upon reflection, what has happened in the last two years is that I had put myself on the bottom of both the “scheduling support people for Jeremy list” and  the “to-do list.”  Parents and educators,  you know what I mean – you all do it. When you have special needs children your life can get swallowed up by your child’s or student’s needs.  I have been squeezing in my writing (ie paid work), my socializing (ie refreshing my social skills) and my exercise (ie keeping healthy) around Jeremy’s needs and everyone’s schedule.

I often tell parents and educators  during my presentations that they have to take time for themselves. Like the cabin crew tells you on the plane – you have to put your oxygen mask on first before you can help anyone else. Same goes for real life. If you don’t take care of yourself, no one else will, and you won’t be  any good to anyone else. So please, do as I say and not as I  have been doing.

Now, I’m putting my priorities first on the schedule. Everything else is secondary. (At least till the new shoes get a little mileage on them).

Self-Advocacy is a Needed Life Skill for Students on the Autism Spectrum Headed to College

By Chantal Sicile-Kira |  October 17th, 2010 |  Print Print  | 

Psychology Today blog, October 17, 2010 – Yesterday, as I was presenting on Autism Life Skills in Grand Junction, Colorado, I discussed the need for teaching self- advocacy to high school students with autism, including Asperger’s Syndrome..  At the end, a parent approached me and said she was shocked to learn that once their child on the spectrum graduates from high school, reaches the ripe old age of 18 and is planning to attend college, a parent is no longer the person responsible education-wise: the student is. This means that when they are  18 years of age and are college students, the college contacts the student, not the parent. If the student will be requiring any kind of accommodations, he or she – not the parent – will need to ask for them  and discuss the need with Disabled Student Services.

This is why it is important that before they graduate form high school, students  know how to advocate for their needs. This includes having a good idea of what their disability is and how to describe it, what kind of learning style they have, their strengths as well as their weaknesses, and know what accommodations they will need. These students should know their rights, be able to discuss the accommodations, and know how to carry on a conversation and convince the college of their need. Some Disabled Student Services are knowledgeable and helpful to  students on the autism spectrum, others are still more comfortable with students that have a physically challenging condition, and have a difficult time with those who have an ‘invisible disability’.

All students on the spectrum need to learn self-advocacy skills,  but those heading to college need to learn them before they  graduate. If you are a parent or an educator of a high school student,  have self-advocacy goals addressed in the  IEP (Individualized Educational Program) or ITP  (Individualized Educational Program).  High school is the best place for him or her to start learning these skills, if he or she  has not already done so. For some information on transitioning from high school to college, check out  Catching the Wave from Grossmont College, a community college in the San Diego area. Some of the resources and facts may apply only to California, but there is a lot of good information for high school educators and parents to consider.

Jeremy Sicile-Kira

Jeremy Sicile-Kira

An Interesting Read: Create Your Own Economy by Tyler Cowen

By Chantal Sicile-Kira |  October 16th, 2010 |  Print Print  | 

About a year ago, this book arrived on my doorstep and although I was intrigued by the title, I wondered why I was being sent a book about economy by my publisher.  I was busy writing 41 Things to Know About Autism so I put it aside. Today, heading out the door to catch a plane for a speaking engagement in Grand Junction, Colorado, I grabbed it to read on the plane. I thought it would be nice to read something different from my usual repast of autism books.

Create Your Own Economy: The Path to Prosperity in a Disordered World, is a misleading title because this book doesn’t seem to have much to do with economy but does talk a lot about how as individuals we organize information these days and how this relates to autism in the writer’s mind. Tyler Crowen, a behavioral economist, writes about how people with autism organize and manipulate information, how our consumption of information is changing, and how the way we organize these information bites are reminiscent of autistic thinking. A very interesting read, Tyler has many positive things to say about autism and how it should  be discussed not as a disability, but rather as an ability and an asset to society. Although I agree in principle, I only have to think about how much help my son needs at 21 due to his autism and how much it is costing the state and the family for him to live due to his need for 24 hour supports. That’s the reality of his economy – and mine – at the moment.

That being said, I agree with much of what Crowen has to say, and it would be nice if society had more his viewpoint when looking at some of the ‘quirkiness’ or ‘obsessions’ of those on the spectrum. Crowen became interested in autism when a reader of his blog wrote  telling him he sounded like he had a lot of Aspie or autistic traits. So Crowen began to read about autism. He states at the beginning of the book,  “As I read more, I began to see that the autistic mind-set about engaging with information is a powerful way to understand the whole world around us. Especially now.”

Read it for a fresh look at autism, and how the way we use and analyze information now is more like our loved ones on the spectrum.

Back to School 101: Tips for General Education Teachers About Students with Asperger’s Syndrome

By Chantal Sicile-Kira |  October 13th, 2010 |  Print Print  | 

This is from my Psychology Today blog published September 9, 2010

Often junior high and high school teachers have teenagers with Asperger’s Syndrome (AS) included in their classrooms, and are not given much in the way of useful information. Here I hope to provide a few practical tips that may be helpful to educators with no practical knowledge about students on the spectrum.

Parents, you may wish to print this out to give to your child’s teacher, or send them the link. There are only a few tips here, but usually teachers are receptive so practical information that may help them to understand and reach their student.

Asperger’s or High Functioning Autism (HFA) is often described as an ‘invisible disability’ because students on the spectrum do not look different frorm most students. Most teachers expect them to act like everyone else, but often the student gets in trouble for behaving in a way that seems rude, disruptive or non-compliant. A diagnosis of Asperger’s or HFA is based on challenges in the areas of communication, and social relationships, as well as what appears to be an obsession or passion for a particular area of interest.

Here are some tips that may help the school year go a little easier for you and your student on the spectrum:

* It’s a good idea to have a hard copy of the homework assignment to hand to your students on the spectrum, because most of them are mono-channel, meaning they have only one other processing channels (auditory or visual) working effectively at one time. This means they cannot look at the assignment on the board, write it down and still be able to focus on what you are saying. By the time they have finished copying down the assignment, they have missed your intro to that day’s lesson. This mono-channel aspect makes it hard for a student to multi-task, and by only requiring him/her to do one thing at a time, it will be much easier for the student to be focused on the day’s lesson.

* The student with Asperger’s or HFA usually takes things literally – this is part of the communication challenge. For example, if you address the class by saying “Please turn to page 12,” expecting the students to start doing the work on that page, the Aspie student may turn to page 12, and then just sit there, awaiting further instruction. Meanwhile, you may think he is being a smart-aleck, but I assure you, he is not. You need to say “Please turn to page 12 and write the answers to question 1-5 in your notebook.”

* This taking things literally means that also the student may not understand all the nuances of language or social customs, what we call ‘hidden curriculum.’ Think of what it is like as a foreigner in a new land and how they need to be explained the local customs- that is what it is like for a person on the spectrum.

* Students on the spectrum are often described as being obsessed with a particular topic or subject, for example, space travel, buildings, certain types of music, transportation. Actually, being passionate about a topic shows an interest in learning. If you know what your student is passionate about, you can relate your lessons or subject in some way to his area of interest and your student will excel.

* Many students on the spectrum are overly sensitive to noise and crowds, making transition times between classrooms difficult. By allowing the student to arrive or leave a few minutes early or late, you will make it much easier for that student to arrive to class less stressed, and ready to focus on the lesson.

Students with Asperger’s Syndrome or HFA are usually very bright and eager to learn. Hopefully these tips will help the year be a more productive one for you and your student.

Back to School 101 : How parents of ASD teens can get prepared for the school year

By Chantal Sicile-Kira |  September 3rd, 2010 |  Print Print  | 

Here’s a column I wrote for the Examiner.com and still useful for this new school year!

Aug 27   Holy Moly – can you believe the summer break is just about over??  In last week’s column, Back to School : How to prepare your teen, tips for preparing your teen on the spectrum for the new school year were discussed. In this column, some ideas on  how parents can best be prepared for the new school year  are covered.  These tips are from both the “Back to School Guide” put together by A2Z Educational Advocates based in Pacific Palisades, and from my book “Adolescents on the Autism Spectrum.”

  • Perhaps it seems obvious, but contact your school if you have not been informed of your teen’s  schedule or the name of the teacher(s), classroom(s), bell schedule, district and master schedule for the new school year. Sometimes, these are not known till the last minute and the school administrators are dealing with many issues – budget cuts, union and staffing concerns, etc. But, by asking politely and reminding them that you need to ‘prime’ your teen about where he needs to be, who he will see, what the schedule is for the first day of school, you can reasonably hope to get an answer.
  • Review your teen’s  IEP document to refresh your memory about what the goals are. If you have any questions as to how the IEP will be implemented, get a list going to communicate your questions to the person responsible.
  • If your teen is to receive aide support as stipulated by the IEP, it would be a good idea to contact the administrator to insure that an aide has been assigned. If specific training has been specified in the IEP,   ask  if the aide has been trained or when the training will take place.
  • If your teen receives related services at school such as occupational therapy and/ or speech therapy, make sure you are aware of when and where he is receiving the services and that it is in line with the IEP. If the services are provided outside of the school day, contact the non-public agency providing the service to ensure an appropriate time is scheduled for your teen.
  • This is a good time to ensure any records regarding your son and his educational needs are in order. Filing everything (IEPs, assessments, correspondence) in one 3-ring binder in chronological order is most helpful as it provides easy access when you need to find a particular document.
  • If your child is fully included, or has a new special education or resource teacher, it is helpful to provide the teacher with a one-page positive overview about your teen, and ensure that the teacher is aware of the IEP goals and objectives. Your teen may wish to write his own note to the teacher.
  • Self –advocacy is a skill that should be developed in every teenager. When situations come up in regards to information that needs to be shared with the teacher and classmates, or situations arise that need to be resolved, think of ways   your teen take part in that process, and bit by bit, to take more ownership of it, depending upon his/her ability level.

In my next column, some strategies to help general education teachers who have students on the spectrum included in their class will be shared.

NY National Autism Association Presentations

By Chantal Sicile-Kira |  September 3rd, 2010 |  Print Print  | 

This summer Jeremy and I went to New York and presented to the local chapters of the National Autism Association in July 2010. Many wanted copies of the presentations we gave. The presentations are embedded below, after the break.  You may download each by clicking on the download option in the viewer. Please do not reprint without permission. Read More »