Autism and Sleep

Sleep can be difficult for any young child, but when you are dealing with sensory sensitivities, schedule changes and and communication barriers it can be down-right agonizing.

Julia Walsh from Good Night Sleep Site NC has some tips for us on her blog: Click HERE

Why do I support Autism Awareness?

April is Autism Awareness Month, and April 2nd is Autism Awareneness Day where everyone is supposed to wear blue to show support.

Why do I promote Autism Awareness?  

Obviously as a parent of a child with Autism I want to show support for what he is dealing with.  I want to share with the world the “road map” that I have learned to navigate.  As a parent, it is my job to prepare my child for the world, but I also feel a need to prepare the world for my child.  Those who are close to him need to know what his triggers are and how his mind works, and also how wonderfully bright and funny he is.  

So I raise awareness for my son so that he can have the most amazing life possible and be comfortable in his world.

But it’s more than awareness and support… its understanding and acceptance.  That is the end goal of wearing blue and sharing Autism Awareness Ribbons.

Many times since my son’s diagnosis I have found myself thinking of an elementary school classmate of mine.  His name was Trevor and it was obvious to us all (even at a young age) that Trevor was different.  He cried (and by that I mean he screamed at the top of his lungs) for hours after his grandmother dropped him off at school each day.  It became an expected event.  “Oh, that’s just Trevor”.   I remember thinking how he talked weird and ran funny.  No one would play with him, or maybe he didn’t want to play.  And on many occasions, we would hear Trevor being spanked all the way down the hall.  His behaviors were not to be tolerated.  I suppose the thought was that discipline was the only way to “fix” him.  I sit here now with tears rolling down my face and I want to reach out to that Trevor.  That scared little boy who was so misunderstood.  He was crying for help, but no one was listening.  I don’t know that he had Autism, back then I guess it wasn’t something many people talked about.  And I don’t know what ever happened to Trevor.  I try to think that he became a well-functioning adult despite his rough childhood, but the reality is he never got the help he needed. 

I want to raise AWARENESS of Autism so that people know the symptoms.

I want to SUPPORT those who have Autism or are affected by it.

I want to spread UNDERSTANDING so that children who can’t express themselves can be understood.

I want to spread ACCEPTANCE so that we may eliminate the stigma and children, like Trevor, can learn that it’s OK to be different.

These are a few of my favorite things...

As 2013 comes to an end, I can't help but think of where we were a year ago and how much progress JC has made since then.  I wanted to give tribute to the supports that have made such a difference in our lives and in his development.  Below are a few of my favorite things from 2013:

1)  Fish Oil Supplements:  We use Nordic Naturals Strawberry flavored.   Liguid filled gel caps make it easy to puncture the capsule and pour into juice or other beverage.  I try to maintain a daily regimen, but if I slack off and he is having a rough day or two, difference that I see in my child within 24 hours of taking these supplements is amazing.

2) ELECARE Formula:  Although very expensive, this formula has allowed JC to grow and thrive.  it is n amino acid based formula that is already broken down and only requires the body to absorb it , not digest it.  For a child like JC who has many food allergies and  a history of digestive issues, this formula has been a must have.

3)  Occupational Therapy:  I just cant say enough about the impact that OT has had on JC's development.  When I think of where he was before starting OT, and where he is now... its astounding!  For those who many not know how OT is used for children with sensory issues (including Autism), here is a great video that descriges sensory integration therapy.

4) Speech Therapy:  Just as with OT, Speech therapy has made such a difference in JC's development.    And not just the verbal use of words.  It has been much more than htat.  JC's therapist understood his challenges beyond speech.  She knew that although he could say many words, those words escaped him when he became frustrated or upset.  She also knew that he did not always form a connection between a word and an object.  She introduced us to visual schedules and social stories and those have made a HUGE difference in his frustration level and my understanding of him.

5) Visual Schedules & Social Stories: to read about these see my previous post

6)  Social activities like
Kindermusik:  If you aren't familiar with Kindermusik, it is a program for young children that focuses on music and movement to improve early brain development.  It is a "mommy and me" class layout for children JC's age and it helps to introduce the concepts of social interactions while maintaining the comfort of familiarity and fun.  Here is a video of JC enjoying a Kindermusik class:

And Preschool:  Finding the right preschool for a child with special needs can be challenging.  I choose JC's preschool based on small class size and access to a large gym for lots of physical activity.  It has been a wonderful experience for him and his teachers have gone out of their way to try to understand him and his needs.

7) Headphones:  One of the challenges for someone with sensory integration issues is discriminating among all of the different sensations they experience at any given time. Imagine being in a crowd and hearing everyone's conversation instead of being able to focus on the person with whom you are speaking. Headphones have been a huge help for keeping JC focused and reducing overstimulation.

8) Calming techniques:  JC is a snuggler and often he relies on me to help calm him.  But rocking, swinging and deep pressure also work well.  A Weighted Blanket from Sensory Goods has become a calming tool because of the deep pressure that it provides.  During the first night of use, JC slept without waking for several hours (which is uncommon for him).

9)  Sensory  Play:  Tons of everyday items can be used for sensory experiences.  Playdough, sand, bubbles, bird seed, coffee beans just to name a few.  In this same category, I like to put  Movement toys like the swing and trampoline:

These have been integrated into our home and used on a regular basis to help regulate JC's sensory input.  What I mean by this is sometimes, when JC is overstimulated, swinging will calm him.  And sometimes when he is under stimulated, jumping can help find that happy medium again.  With a sensory-sensitive child, too much or too little stimulation can lead to tantrums and meltdowns.

I also love the T-seat we got from Sensory Goods!  This is a great for children with low tone and trunk strength.  It requires them to balance while sitting and strengthens those core muscles.

10) iPad apps: Here are my favorites (most of which have "Lite" versions available for free)
INJINI  Includes several different activities to improve cognitive development

Anything from Wonderkind:  These are interactive "Seek n Find" scenes ... LOVE THESE!

My Playhome:  This is probably JC's favorite.  It is an interaxtive house with various people and you can make them interaxt with their environment.  For example, the mom can eat a bowl of xereal and the chidl can listen to music.  Very imigination friendly but also promotes appropriate social understanding.

Endless Reader:  Excellent sight word app!

Touch n Say: This is an incredibly simple app that features several brightly colored faces saying words, singing songs or making funny sounds.  So why do I love it so much?  Because it touches on all the basics: colores, letters, numbers and best of all... feelings!

Autism: Cured or Misdiagnosed?

As JC continues to make great progress I am often asked "do you think he will be cured?" or "well maybe he was misdiagnosed". Here are my thoughts on those possibilities:

Let me start by saying that I am not a believer that Autism can be cured, because after all it is not a disease.  It is, in the simplest terms, a difference in the way the brain functions and processes information. There is no "cure" for that, nor is one needed. The aspects of autism that we as a society seek to "cure" are the symptoms of this brain functioning difference.

What do I mean by "symptoms"?

Sensory issues impede and can severely limit everyday life, so we try to desensitize the body to various stimuli.  The stereotypical repetitive movements (flapping, rocking, jumping) all come from a need for sensory input and an attempt to regulate the body in some way.
Trouble with communication and speech results from various components of the brains operation. For example, some may not be able to process speech and emotions at the same time.  Others may not be able to speak at all because the process to formulate an idea or response, process the appropriate way to express that idea or response, and then plan the motor movements needed to say the words is a very un-natural process that requires so many steps, each of which produces an opportunity for error and break-down. In many cases, a child is non-verbal not because they have nothing to say but more because they simply can't say it with words.    
Rigidity and inflexibility can result from an overwhelming sense that the world is unsafe. Imagine if everything you touched, heard, smelled or saw was scary and painful. You would want to have as much predictability in your life as possible to reduce the unexpected and thereby limit the assault on your body.  Requiring a strict routine or method of doing something becomes a coping mechanism so that the child can function on a daily basis.
Social issues arise from a variety of reasons as well.  Maybe because of sensory issues a child doesn't like to have others in "his space". Or maybe the effort to communicate is so in-natural that a child would simply prefer not communicate with others.  Or perhaps the unpredictability of social situations makes the child uncomfortable thus leading to a need to control and be inflexible in play. This inflexibility and need for control can cause difficulties in social  situations because the child doesn't understand or seek to understand others emotions or desires.  In many cases I think they are simply trying to preserve their own sense of comfort rather than avoiding acknowledging others.

These are just snapshots of certain circumstances, specific to what I have seen with my own son.  As we understand the reasons behind the behaviors, we can better understand how to deal with these "symptoms".  In our situation with JC, we have focused on early intervention therapies that seek to deal with the root cause of the behaviors, therefore eliminating the need for the behaviors.  As a reminder, JC entered sensory integration therapy at 16 months old, speech therapy began at 23 months old, and he was diagnosed with ASD (Autism Spectrum Disorder) at 30 months old.  Throughout that entire timeframe, we were focusing on these behaviors very early, even though we didn't know they were related to autism. We began implementing strategies to overcome challenges and tried to provide him with appropriate coping mechanisms.  But I think the biggest success of our endeavors has been that we gained a better understanding of him, of how his brain functions, and of WHY he reacts or behaves a certain way. It is only with that realization that we have been able to help him overcome the challenges that have made his life so difficult.

Does Progress = Cure?

I often talk to people and I will share how well JC is progressing.  His speech has made marked improvements even just over the past months. His rigidity and inflexibility have subsided somewhat as we are more able to understand his "triggers" and help him navigate through the world.  He is showing great improvement in social skills as he learns to share and take turns. He has even made great strides in emotional awareness and I have been brought to tears more than once over this accomplishment.  Just the other day, I scolded him for doing something and he looked at my face, saw that I was upset, thought about it for a second and then said, "sorry mommy". That was such a huge moment!  It showed that he understood the expectations, knew that he failed to follow them, acknowledged that it had an affect on me, and then accepted the responsibility by saying he was sorry. This seems like such a trivial thing to those who haven't dealt with autism first-hand, but let me tell you it was like "first words" all over again!

As you can see, JC has made enormous leaps in the development and progress.  The child who once screamed rather than communicating, refused anything outside his "norm" and made us all walk on egg shells for fear we would "trigger" a meltdown has become a very happy and somewhat well-adjusted little boy.  Much of this progress has taken place over the past 6 months. Of course, there is a lot of normal developmental progress that goes into the time between 2.5 and 3.5.  But I don't think it is a coincidence that the progress peaked after his diagnosis with autism. Why? Any diagnosis is just a label but it is with that label that you begin to understand.    It validated the challenges and encouraged the progress. Knowing that there was a reason for a certain behavior gave me a place to start and from there, we were able to "re-build".  Studies show that early and intensive interventions can make all the difference in children with Autism. Their brains are still developing and it's the best time to "re-wire" those connections.  After JC was diagnosed, I spoke with the neuropsychologist who did his evaluation.  I asked if JC could "outgrow" autism.  After all, I knew he was high functioning, I knew he was very smart, and I knew we had already made such great progress.  His response was this: "autism isn't something one grows out of.  But a child can develop coping mechanisms and learn to better navigate the world so that the signs of autism aren't as noticeable or debilitating.  JC has a very good chance of being one of those children who, learns to function and manage his Autism."  That became my goal: For JC to develop coping mechanisms and an ability to self-regulate so that his issues wouldn't interfere with daily life as much as they had at one time.

So do I believe JC was misdiagnosed?  No, I have always known that his brain works differently. Autism is a spectrum of symptoms and severity. JC started on the milder end of that spectrum so every little bit of progress leads to a more manageable life.  It doesn't mean things will ever come naturally to him, but he can learn to adapt.

Imagine walking through a maze with obstacles at every turn. That's what life was like for him (and us) before the diagnosis. Having an evaluation and a diagnosis was like giving us a map to the maze. We knew there were going to be obstacles, but we learning to navigate through them and in some cases avoid them altogether.  There are days when we have new challenges or things regress a bit, so we pull out that map again (maybe we go back to basics with visual schedules or social stories).  But having that understanding provides a comfort that we did not have before his diagnosis.  Some day we will be so accustomed to traveling through the maze that we will be able to do it without a map. And one day, JC will be able to navigate the maze on his own.

So do I think JC will ever be "cured"?  As I said before, I don't think Autism can be "cured" nor does it need to be. As I see it, some children can "develop through" autism, and JC is showing great progress in doing just that!

Here is a video of Daryll Hannah speaking about her life with Autism.  What a powerful testimony of what it was like for those with Autism years ago.  Her mother was told to institutionalize her!  And now she functions very well as an adult.  As she describes, she still struggles but has gained the ability to overcome much of it.  THAT is my goal for JC!

That's What it FEELS Like to be a Special Needs Mom

I often hear parents of special needs children saying that others just don't "get it". They feel judged by outsiders who think their child is a “wild-child” or just needs discipline.  I try to remember back before I was a special needs parent.  How quick I was to pass judgment and say “well, if that was my child…” as if I had all the answers.  

I remember when JC was a bit younger, he was having an especially difficult day.  We were involved in a parent group activity I felt so horrible that my child was acting this way.  I was so worried about what all of the other moms thought and how I must look like a horrible mother.  No one knew of JC’s diagnosis or history.  So to them, he looked out of control – and I looked like I had no control.  But one mother said to me, “I have been so impressed by how you interact with your son.”  I almost cried.  How wonderful of her to notice, and then share that with me!  From that day on, I no longer worried about what it looked like from the outside.  Because for every one person who may think negatively, there are 5 others who may realize that I am doing the best I can.  And it doesn’t really matter anyway does it?    Aren’t we supposed to be oblivious to what others think of us?  Aren’t’ we supposed to know that we are strong and have our child’s best interests at heart no matter what anyone else thinks?  I hope you are having better luck with that than I am.  

We are our own worst critics as mothers (all mothers, not just special needs moms).  We second guess ourselves, feel an overwhelming amount of guilt over things that we realistically cannot control, and hold ourselves to expectations that are unattainable.  So it’s no wonder we feel judged by outsiders because maybe we project our own feelings onto others.  

Bottom line, being a mom is hard.  As the mother of a special needs child, our struggles may be different than someone else’s but when you look deep enough the feelings are very similar. 

So I wanted to put together examples of what it feels like to be the mother of a special needs child.  Examples that all moms can relate to and maybe when we all realize we are more similar than we thought, we can all judge each other(and ourselves) a little less.  

What does it FEEL like to be the mother of a child with special needs?

Think about...

That feeling when your child is sick, but you can't do anything to make it better. You feel helpless and all you can do is hold them.

That's what it feels like when my child has a meltdown because of the slightest frustration or variation in his expectations, and I can't do anything to fix it. I feel helpless and wish I could do something to make it better. 

That feeling of heartbreak when your child didn't make the football team, or cheerleading squad, or basketball team.

That's what it feels like when I see my child struggling to self-regulate, rebound from frustration or deal with social situations. My heart breaks for him, but I can't turn the situation into a life lesson about trying hard and "better luck next time". It's a constant struggle, and the only lesson seems to be that slow and steady progress will take time.

That feeling when you have been working for  hours to help with a project of studying for a test, and the longer you try to help, the more frustrated everyone becomes.

That's what it feels like when I try to teach my child how to play a game and the rules are so abstract that he refuses to participate in any way other than his own. Or when he becomes set on doing things a certain way, and as much as I try explaining that it doesn't work that way... He continues to insist. 

That feeling you get after the unending fight to get your kids to eat their veggies.  The frustration, the "just one bite", the "no dessert until you eat!"

That’s what it feels like every day.  Imagine your child refusing to eat ANYTHING.

That feeling when your child starts a new school. You are anxious about how they will fit it, hopeful it will be a good fit, and worried that it won't be.

That’s what it feels like almost every day as we enter any situation. Even a common experience can feel new depending on the mood, level of stimulation, subtle changes in environment rile expectations... or any other factor. 

That feeling when you have had such a long day and you can't stand the argument over whether or not they can watch TV before bed because all you want to do is have peace and quiet.

That's what it feels like when you see us in the grocery store or restaurant and I allow my child  to watch the ipad or eat cookies out of the bag because I have fought him all day over far more important issues like wearing clothes, and at this point I just want to finish the shopping trip or restaurant meal without a meltdown. 

That feeling when your child lashes out at another or jerks a toy away and screams. There is an expectation that 2 year olds don't want to share. We spend time teaching them appropriate social habits, and they learn them through experience and through watching others. 

That’s what it feels like on a regular basis because my child struggles to understand those social rules. "Teaching" means not only telling him and redirecting his behavior, but also using social stories, video modeling and a whole lot of hovering. The end result may eventually be the same.  He will learn what behavior is appropriate and what is not.  But the path that we take is long and winding. 

That feeling when your child cries for you after you leave then at kindergarten for the first time.

That’s what it feels like when my child is so attached go me that he will not allow anyone else to care for him.  I love having such a close connection, but for him it is a security issue. I "get him". I have always been there with him. I know how to make rough situations easier. I am the only one who can calm him after a meltdown or tantrum. It drains me to the core, but I am the only one he wants in those situations. 

That feeling of embarrassment after your child knocks over a display in the grocery store or spills his drink at a restaurant.

That’s what it feels like anytime we go out.  Loud screams, running around (unless buckled in a cart), climbing over chairs and under tables in a restaurant. We don't go out much unless it is a place with a playground. 

That feeling of exhaustion when your baby is a newborn and is up several times a night and then needs your constant attention during the day too. 

That’s what it feels like, even three years later.

That feeling when you are the first of your friends to get married or have a baby.  Everyone else is still living the single life. You don't fit in anymore. Your lives are so different.  You lose touch.

That’s what it feels like as the parent of a special needs child.  You have no time for play dates because of all the therapy sessions.  In fact, you look forward to therapy sessions to have someone to talk to that understands what you are going through. And even if you had time to schedule play dates, you know your child isn't that great at play dates so it isn't a fun experience for either of you. So you relinquish yourself to hanging out at home and are so thankful for the other special needs parents you find along the way. 

That feeling of defeat when your child is given an antibiotic or steroids that hype them up so much that they are bouncing off the walls.  And all you can do is count down the days until the medication is over.

That’s what it feels like every day for a child who has sensory issues.  They play hard and crash hard. Any it never wears off. 

But now think about…

That feeling you get when your child takes his first steps, says his first words or smiles at you for the first time. That amazing feeling that all the sleepless nights are worth it and you can't imagine life without that sweet face.  The pride you feel when your child wins a competition or advances to a new level of something after trying so hard. 

THAT’S WHAT IT FEELS LIKE even after the smallest accomplishment, because I know how far he has come.  The most simple request to “help me” brings tears to my eyes because he is FINALLY using language to ask for what he wants.  The act of saying “I’m sorry” after a tantrum or meltdown has such huge implications that I can’t even describe how proud I was at that moment.  THAT is what every day feels like as a mother of a special needs child.  

Scripts and Social Stories

Scripts

I often say that JC has "scripts" for various social situations and when these scripts aren't followed, his anxiety level rises and he often cannot function.
Think for a  minute if you went to a foreign country.  Rather than driving on the right side of the road, everyone drove on the left. And what if instead of eating at the table, you ate on the floor. And instead of sleeping in a hotel room you slept outside.  Twins would all be very unnerving.  ESPECIALLY if no one warned you about it.
JC relies on routines so heavily to give him the understanding of what to expect in situations. He then develops a script in his mind as to what that situation should look like (for us, things like: we drive on the right side of the road, we eat at a table, we sleep in a bed in a hotel).  And if that script changes (especially without notice) his expectations aren't met and he cannot adjust by himself.

I think of it like this:
JC lives in a box - his comfort zone.  He has all of his rules and scripts setup inside that box like wallpaper.  Sometimes he allows someone in there with him, but they have to also follow his scripts or he quickly kicks them out.  Occasionally he will venture outside of his box, but quickly retreats back inside the safety of that comfort zone when life gets overwhelming.   The walls of the box are always changing.  Sometimes, they are like clear plexi-glass.  He can look through to the outside world and sometimes interacts by meeting you half way.  And other times, the walls are made out of bricks and there is no getting in or out.  The majority of the time, I would say the walls are made out of sticks.  Strong, but able to be permeated with the right tools.  And just like we build our houses to protect us from the elements or rain, wind and sun - JC has built his box to protect himself from the unknown, the unexpected, and the unexplained elements of his world.

So how do we get through into JC's box?  Certainly not by knocking the walls down like the big bad wolf or trying to drag him out kicking and screaming.  We have to remember that this box serves a purpose for him.  So we work to be included in the box, then from the inside out we can gradually adjust the structure, add to or change the scripts and maybe chip away bit by bit at the rigid walls.

This is why we use visual aides and social stories.

What are Social Stories?

Social stories help explain what is expected in certain situations. They can be simple short stories (we use pictures along with them) that describe a social situation and give the child a "script" to follow when one is not readily available already.  For our example above, it would be like sending us to a foreign country with a guide book that says "we drive on the left side of the road, eat on the floor and sleep outside".  All of a sudden our experience isn't surrounded by anxiety and uncertainty.  We may not like it - its still outside of our comfort zone - but at least we know what to expect.

Social Stories contain certain types of sentences that describe social situations and explain in detail what is expected in those situations.

• Descriptive Sentences: these are statements of fact... e.g: "Sometimes I ask for a cookie"
• Perspective Sentences: these are statements that refer to or describe an individual’s internal state, their thoughts, feelings, beliefs, or physical condition…e.g. “I like cookies"
• Directive Sentences: these describe desired responses to social situations... e.g. "If Mommy says "no" I don't scream or cry"
• Affirmative Sentences: these often express a commonly shared value or opinion within a given culture…e.g. “I can wait or choose something else"

It seems simplistic but after hearing the story several times, the concept is engrained and when the situation arises, a simple reminder will help ease the anxiety of the situation.

In addition to molding behaviors, another important reason to use social stories is to provide preparation for the unknown. We went on vacation recently and used a social story so that JC would have a preview of what to expect so that all of the new sights and activities wouldn't overwhelm him. They are a useful tool, along with visual schedules and first/then cards to alleviate stress in day to day activities.

Pinwheels: A lesson in Life

Pinwheels are a staple of childhood.  They are so simplistic in their design, but seem magical to a toddler.  JC was playing with a pinwheel last night, or at least trying to.  He knew that blowing on it should make it spin, but it wasn't quite working for him.  He couldn't get his mouth puckered the right way to blow a single stream of air.  His attempt was more like a heavy breath so the pinwheel wouldn't move.  He struggles with mouth movements (which is part of his issue with speech) and only recently successfully "puckered up" for a kiss :)

As the pinwheel sat lifeless, his frustration level started to rise so I sat beside him to help.  We both held the stem and we sat face to face with the pinwheel between us.  As he would blow his heavy breath, I would secretly blow a directed stream of air to make the pinwheel turn.  His eyes lit up with excitement!  Once again, he faltered the mouth position and tried his best to blow - as I blew and the pinwheel started to spin he squealed with delight.  This continued for quite some time and as I sat there I realized what an amazing moment this was.  It wasn't just playtime with a pinwheel, it was a moment when we were both acting as one.  I was replacing his breath with mine.  I was filling in the blanks where he wasn't able to do so.  I was providing a chance for him to succeed where he had previously failed.  It was an opportunity to show JC that even those things that frustrate him can be overcome... that by perservering through difficulties magical things can happen.  Maybe next time he picks up the pinwheel, I won't be right there using my breath to make it spin, and maybe he will again be frustrated that his efforts are in vain.  But then again, maybe he will remember that it CAN be done and he will keep trying.  At that moment, I felt that fleeting feeling that I was making the world easier for my little guy.  And I wished that every frustration could be eliminated that easily.  I would breathe every breath for him, to make his world easier.

Weekly Fun Schedules

Weekly Schedules for weeks filled with Play, Learning and FUN!

I will update more weeks soon!

Links to the actual Pinterest Projects:

Gum Drop Geometry

Water and Ice Play

Baking Soda Volcanos

 Balloon Ping Pong

 Links to the actual Pinterest Projects:

Marshmallow Catapult

Outdoor Shower

Fireworks in a Jar

Water Gun Target Practice

See more summer fun ideas  HERE

Ready for Summer: Planning with Visual Strategies

(Much of the first part of this post is updated from a previous post... but made relevant to summer planning)

Summer is coming, the kids will be out of school and for me that means one thing... Panic mode!  I'm not sure about you, but I often have nightmares about being home alone with my kids and having no way to entertain them (well, maybe not nightmares, really...  More like anxiety, fear, and panic).  My oldest, BB, is 7 and requires constant movement and conversation or he will completely implode. My youngest, JC, is 2.5 and has Autism, sensory processing disorder, a speech delay. He requires constant attention, redirection and adherence to specific routines or he will implode.  I am left in the middle trying to keep both kids happy, while trying not to implode myself!

I have been planning for the impending summer craze for several weeks.  JC has difficulty when his daily routine is altered, so what is going to happen when we don't follow this routine any longer?  Luckily, I have a solution.  My plan is to build on what already works.

I have been utilizing visual strategies with JC for several months.  Visual strategies can consist of visual schedules, choice cards, first/then cards or any other visual tool used to help in the planning, organizing, remembering or completing tasks.  It may consist of pictures for younger children or those who are illiterate or it may be words or lists for older children. The use of visual cues helps to organize the task or daily activities making the expectations clear and understandable. This reduces anxiety and alleviates mental stress.

Why are Visual Schedules, Choice cards, and First/Then cards so important?

Visual Schedules, Choice Cards, First/Then cards are all "tools" that I rely on very heavily.  For JC, understanding verbal instructions or grasping auditory information in the mix of an overstimulating environment is very difficult.  It takes him longer to process information that he hears than that which he sees for a variety of reasons, many of which I don't fully understand (yet).

Primarily, it seems that his mind works more visually. He cues into words and seems to need a visual image of that word to process it. In the case of verbal language, if his brain takes a word and then creates a corresponding image before processing the word, then it makes sense that the processing time would be longer.  A perfect example of this is food choice.  If I ask JC, "what do you want to eat?" there is never a response. It is too much for his brain to process.  For us, it's a simple question.  But for JC, the search through his memory for all the food choices and then the process of labeling each one with a word is just too many steps.  Now if I ask, "do you want a banana or toast" that CHOICE makes it a little easier, but often there is still no response until I use a visual cue showing a picture of a banana and a picture of toast.  Then (and only then) will he make a choice by pointing to the picture.  It's like having a multiple choice test.  Choosing an answer from 4 given choices is easier than answering with an essay from memory. This is why Choice Cards are so helpful for JC.  And because it takes his brain takes longer and uses more energy to process those simple tasks that we take for granted, he is overwhelmed more easily and has mental fatigue after simple tasks.  His daily activities leave him feeling the way I used to feel after a long day at work working with a budgeting committee to iron out corporate budgets.  It's mentally exhausting.  Using the visual cues to alleviate that demand on his brain for these simple tasks frees up that energy to be used elsewhere throughout the day which means his overall mood and emotional/mental state is much better.
Click HERE to watch this in action!

Think about why we make "To Do" lists.  I often have so many things floating around in my mind that I start to get anxious that I'm not going to finish then all. So I make a list. This helps to organize my thoughts and provides a visual system which I can refer to and "check off" when complete.

Also consider the power of visual cues.  When we eat at a restaurant, they put pictures on the menu for a reason... Because it is powerful.  I am a lover of Pinterest, the ultimate visual choice board (many of the ideas below came from pinterest). We would never read all of those articles in activities for children and recipes or cleaning tips.  But with a pictures, suddenly it all becomes easy to process. We are all visual by nature, but some are even more so.

Visual Schedules:

We rely on the visual cues for many aspects of daily life, not just food choices.  I have 3 different "schedules" that I use daily: morning, afternoon and evening. I adjust the schedule according to our daily plans, and seeing that schedule gives jc an understanding of what the expectations are for that period.
Morning: eat, diaper change, get dressed, go in the car, go to school
Afternoon: eat lunch, diaper change, nap, table/work times, choice time (where JC chooses activities to do)
Evening: eat, play outside, bath, get dressed, book, bedtime

JC understands how this works and if we are having a difficult time in the mornings, I can rely on the schedule to say "look, we ate, now we need to get dressed so that we can go to school". It is amazing what a difference those visual cues make in that simple conversation.

I also have schedules for specific routines like bath time and teeth brushing. JC hates to wash his hair and face. It is has always been a battle.  But with the bath time routine schedule, the pictures show: clothes off, get in tub, wash body, wash hair, dry with towel, all done.  The very first time I used that routine/schedule, JC washed his hair.... Simply because the picture told him too. His visual processing is very strong, and he relies heavily on it so I am learning to use that to my advantage.

Choice Cards:

We use choice cards to allow JC to have some control over his activities.  I can choose some predetermined activities or foods and he can choose what he wants.  It also helps lot limit the endless choices which can sometimes become overwhelming. JC has a difficulty focusing on a take for an extended period. And transitions are also difficult. The choice cards are useful in both of these situations. Imagine being surrounded by a room full of toys and activities and being told to choose only 1. For JC, this is difficult. So allowing him to choose from a few choices with visual pictures makes this choice easier. I also often allow him to choose 2 or 3 activities and we work on transitions. First we do activity 1, he may loose interest flutter around the room after only a minute and at that point I refer to the visual cues and say "you choose cars, are you all done with cars". When he replies "all done cars" we move on to the next activity on his card (which he choose). This models appropriate transitioning and focusing. He cannot move from one activity until he is finished with it, and if he chooses to do an activity, he must follow through with it. It also helps reinforce the importance and adherence to the visual schedule structure.

First /Then cards:

This is my favorite :)  This allows me to direct behavior that I want by using the a goal system. First put shoes on... Then go outside.  First eat, Then you can have a cookie. It works amazingly well!  So well in fact, that I have been able to forgo the pictures in many cases and just use the verbiage: "First... then..." And he understands the directions verbally.  We are making progress!

Think about why we make "To Do" lists.  I often have so many things floating around in my mind that I start to get anxious that I'm not going to finish then all. So I make a list. This helps to organize my thoughts and provides a visual system which I can refer to and "check off" when complete.

Also consider the power of visual cues.  When we eat at a restaurant, they put pictures on the menu for a reason... Because it is powerful.  I am a lover of Pinterest, the ultimate visual choice board. We would never read all of those articles in activities for children and recipes or cleaning tips.  But with a pictures, suddenly it all becomes easy to process. We are all visual by nature, but some are even more so.

These visual strategies have helped me to bridge the gap in his communication ability making daily life much more manageable. In planning for the summer, I can rely on the use of this system that is already in place by simply altering the tasks each day.

How do I create a visual system?

There are loads of ways to create a system, and its all about what will work for your child. I like using laminated cards with Velcro tabs which make it easy to customize for the day or activity or need. Magnets work well too but Velcro is less expensive and more portable. I keep all of my pictures and cards in a folder with different sections for food, activities, schedules etc.  
I used clip art for specific pictures that related to our needs. You can also purchase memberships to websites or order sets online. For JC, eating is a huge issue, so many of my pictures are centered around meals and foods.

If you are just getting started, sit down and make a list of what you would like the visual system to assist your child with on a daily basis. If it is certain behaviors, perhaps a First/Then card would suffice.  If your child has difficulties with communication, you may find the choice cards helpful.  Or if your child needs strict adherence to a schedule or routine, the visual schedule will be helpful. We use a combination of all 3 so I used clipart for foods, behaviors (no running, no yelling, no hitting, ask for help etc), play choices, and routines like teeth brushing and potty training. Your pictures choices will depend on your needs.

Once you have an idea of where to start, search for images that you want to use (unless you are purchasing a ready-made system). For example, I searched google for "visual schedule no hit" and got a variety of images showing a child hitting and a red line through it.  I picked my favorite and copied it into a Word document to get started. Once I had my "library" or images I printed, cut and laminated. Then I created the cards by simply using a printed document with colored squares, which I laminated and attached Velcro.
There are also websites that allow you to print pre-determined images.  www.do2learn.com is one that is very helpful.


Food for thought:  I had favorite grocery store.  A few years ago, they remodeled and moved EVERYTHING. The first time I visited the newly designed store, I left in frustration because I couldn't find anything and I missed the comfortable feeling of my old store.  It took me several trips (and I actually found a new favorite store for a while) before I became accustomed to the new layout. My routine had been changed and it was such a shock to my system that I actually left the store and found a new store to shop in.  What would have helped?  Perhaps more notice?  Maybe a map of the new store?  So think of these visual strategies as a "map" for your child's day. Use it in whatever way works best for you and for your child. I tweaked my system several times before I got it just right.

For more ideas and examples of Visual Strategies you can also visit my Pinterest page: http://pinterest.com/JCsSPDMommy/

How do I start implementing this visual system?

If you're looking to implement a type of visual system, start now.  It will help in the long run if your child already relies on the visual schedule in some aspect so that they are exposed to the concept before the start of summer.

I started with the First /Then cards. It is only 2 pictures, it isn't overwhelming for the child and it supports behaviors that you need to encourage.
Start with 2 preferred activities: play cars, then color. That gets the child's "buy-in" to the process as a whole.  This is in essence teaching the backbone of the entire visual schedule/card system. Once the child is comfortable using the the first/then card for those activities, add in the behavior that you want to elicit. First, get dressed... Then go outside. You can even use a 3 cue system of First, Then, Next where the middle activity is the less preferred.  First, play with trains, then change your diaper, then go outside. It's the same concept as a reward system, but it just takes it to a visual level.
Once that works well, you can step up to choice cards and allow the child to choose the activities to put on the first/then card. And eventually you can "grow" into a visual schedule with multiple activities visible at once. But until the child understands the basics, seeing all of those pictures at once can be overwhelming and counterproductive.
Start this process before your schedule changes for summer. Introducing it into an expected routine will help your child accept it.

Even children who do not have special needs could benefit from visual schedules.  No matter the reason, if you choose to try a visual system the key is consistency and patience. It isn't going to change things overnight. But eventually you may start to notice a difference in small tasks, and hopefully in the overall mood of the day.  Once your child is comfortable relying on the visual strategy, you can make changes to the daily task and routine by changing the pictures.

Beyond the Visual System:

Visual systems may make the transition into a new routine smoother for your child, but what information do you include on the schedule?  JC recently had a difficult morning because at around 10:00 he realized that we hadn't gone anywhere yet.  Usually we are on the road to school by 7:45, but this morning he had been awake for hours and we hadn't left the house.  He started repeating, "ride Mommy car, ride Mommy car, ride Mommy car" because he couldn't wrap his mind around his place in the day since we hadn't followed our normal schedule.  I pulled out the visual schedule to show him our plan for the day:  We ate, we played trains, now its time for a snack and we are going to play with playdough.  He then understood the "new" schedule and adapted to it. 

Remember that many times, the smallest things that we take for granted (like going for a ride in the car each morning) have become engrained in our children.  Those with special needs, especially autism, may have difficulty understanding the "big picture" because they get stuck on the details. So provide those details so that they can fill in the blanks in their minds.

Now we are back to the question of what "details" to provide... what do we put on those schedules?  My goal is to ensure that my kids are receiving appropriate stimulation throughout the summer, while having fun and learning. If your children are like mine, you will hear "Mom, I'm bored" or "Mom, I don't know what to do" so many times that you will threaten household chores to the next child who utters those phrases. But remember, your child has become accustomed to a strict routine.  During school, they are told what to do and how long to do it. Without that structure, they are lost.  Use that to your advantage.  Maintain a routine throughout the summer to optimize the experiences of summer, without the boredom and constant need for guidance.  Think of yourself as the camp counselor/teacher/therapist/supermom that you are!

To get you started, HERE is a link to my Pinterest board for summer activities perfect for all ages. But don't feel like you have to schedule every moment of every day.  Having a general skeleton schedule will be just as useful and less stressful in most cases.

I also like the idea of having one fun activity planned each day for Activity Time.  This is actually my plan for the coming week.  My Pinterest Board has enough ideas to last all summer!

 

 

To see my actual weekly schedule along with links to activities click HERE

 

You can be as detailed and organized as you want.  Start a binder, make a list, or just decide what you want to do day to day.  But by "scheduling" the intent of the day, your child will know what to expect and will look forward to the day's activities.  For children who need more elaborate schedules, you can take the skeleton schedule template and add details as described above.  For older children or for those without special needs, the skeleton schedule may suffice.  Tailor the idea to the needs of your child and family.

And for that "I'm Bored" that you will inevitably hear... Try this!
Put different activities in a jar.  When your child says "I'm bored" have them pull out an activity.  It may be something fun, educational, or it may be doing chores!  The agreement is that whatever it is, they have to do it.  I put things like: Read, Write a story, Write a letter, play legos, clean your room, jump on the trampoline, etc.

Now that I have a plan for summertime fun, I feel much less panic - and I'm actually excited about making memories and enjoying the summer with both kids at home!