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

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!

Autism... A Diagnosis for JC

Today We received confirmation of something that I have known in my heart for quite some time.
JC has autism.

But before you say "I'm sorry", let me tell you why I am not.  JC is a wonderfully sweet and affectionate, silly little boy who experiences the world full-force. He makes me laugh every day and I couldn't imagine a day without him. But, The world is difficult for JC. He doesn't seem to understand situational circumstances, social expectations and has difficulty communicating (which goes beyond the speech delay).  This adds up to a challenging world. He goes though each day with such frustration from feeling misunderstood and attacked and I feel so helpless. Every day I feel like I am failing him because I can't make it all better. He is overwhelmed much of the time and seems held back by issues beyond his control. Now we know why. Now we know the reason behind the behavior, which at times seemed unexplainable. And now, we can help him navigate through this world which consumes him.

Don't get me wrong... It breaks my heart that he faces these challenges.  As a mother, I want to remove these obstacles from his path.  But I'm happy that we have received an early diagnosis and early intervention.  And I feel validated in the decisions and sacrifices that we have made up to this point to focus on his development and to push for early evaluation. I truly expect that he will continue to respond well to therapy and will eventually learn to adapt to his world.

So while I wish things were different for him... I am not sorry that we have uncovered what lies at the root of his issues. I feel like we have reached the top of a mountain, only to realize there is an even larger mountain ahead of us.  But we have seen mountains before, and we will conquer this one too.

(I will write more about the actual testing and results later. My brain is mush right now from processing everything. )

Perspectives of a Big Brother to a Special Needs Child

JC is a lucky child because he has the most wonderful big brother imaginable. BB is 7 and is the most kind-hearted, fun-loving, sweet child I have ever known (yep, mommy bias). But I realize that God had a plan when he sent JC to our family. He knew that even though it would be difficult at times, and even though my patience wears thin, BB is always there to make JC laugh. He understands that JC has a difficult time with daily life sometimes and he tries so hard to be a guide through the rough spots. He mimics my actions and words "First put your shoes on Bubba, then you can go outside".  He is selfless in his giving and sharing because he knows that JC doesn't yet understand fully the art of social give and take. And he thinks of his own ideas for therapy for JC.  He does all of this without my guidance most of the time.  It seems to be intuitive. He just "gets it" and JC is lucky to have such a wonderful big brother.

But, I often wonder how difficult this must be on BB. I know its hard on me and on our family, but from the perspective of a child, what impact is it having?

"Mom, I'm glad I go to school all day so I don't have to be here to listen to Bubba scream all day"

"I never had therapy, because I wasn't bad, right?"

"Was I a lot smarter than Bubba when I was his age?"

These are all things that BB has said over the past few months. Each time, I was heartbroken by the reality of what BB must be feeling. It paints a picture of what his perspective must be. JC is an unruly child who misbehaves and isn't smart because he can't speak well, he doesn't know colors or numbers and won't sit still to read a book.  Of course I explain that JC just learns differently or just has problems with speech, but that doesn't mean he isn't smart. I explain that he doesn't go to therapy because he is "bad" but because he needs extra help with how he understands the world. And the screaming, well... That's something that we all just have to be patient with while helping him find the words to use instead.

Beyond that perspective, the past 2 years have been difficult on our family as a whole. My cancer diagnosis threw everything into survival mode... We just had to make it from one day to the next. Everything was so unstable and there was no such thing as routine.  Is no surprise that JC's symptoms peaked during that time. So once, I was healthy again, the focus turned to JC.  We needed to help him meet developmental goals and settle his anxiety level a bit. I always thought BB handled everything so well that we didn't need to worry about him. He is a "go with the flow" kind of kid, but what happens when that flow turns into a tidal pool and he is caught in the middle.  The anxiety level of our household is through the roof because of the stress of JC's daily issues. It affects, all of us, but I hate to say that I didn't realize the effects it was having on BB until recently.

BB was required to be more mature than most to cope with what we went through. Now he he seems to feel expected to be the responsible child, even beyond his years. He seems to inherently understand that JC has certain needs and tries not to take it personally when JC screams at him, or when I am overwhelmed by the situation. But the look on his face when he is trying to help or play and JC reacts in such a volatile way, breaks my heart. I can explain it away as much as possible, but it still doesn't change the fact that it hurts him or that it increases his anxiety level just like it does for me. Click HERE to see what I mean.

BB doesn't have friends over very often because of JC's outbursts. He most recent experience with a friend visiting involved JC yelling at this poor child because he sat in the seat that JC had apparently claimed as his own for all time. And how do you explain to another 7 year old who isn't used to having a special needs brother?  What has become second nature to BB seems uncomfortable and intrusive for other children. So he is relegated to play dates of outside or away from home. It isn't fair, and it isn't easy... but he takes it like a trooper and he never complains. He enjoys the good times when JC is being silly or wrestling with him, and he tries to lift our moods on the bad days. Which is why he is the perfect big brother for JC. He will grow up with a wealth of understanding and compassion and will be better for the experience. But for now, we all learn from day to day hoping that the day will come when we can live a life without turmoil.

Visual Strategies: Visual Schedules, Choice Cards & First/Then cards

What are Visual Strategies?

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.

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.
Click HERE to watch this in action!

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!

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 I less expensive and more portable. I keep all of my pictures and cards in a folder with different sections for food, activities, schedules etc.  For more ideas you can visit my Pinterest page for more ideas:  http://pinterest.com/JCsSPDMommy/

How do I start implementing this visual system?

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.


Even children who do not have SPD 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.

My Child is an Orchid

One thing that I have come to understand about JC is that there are good days and bad days. But why?  Why are some days better than others? When everything is seemingly the same, why do activities on some days elicit much more volatile reactions?
Then it hit me... My child is like an Orchid!

Orchids are beautiful, highly sought after flowers, but are very temperamental and difficult to grow.  But not just that... There are over 30,000 orchid varieties that all thrive under varying conditions.  Each must have a specific temperature, specific humidity, specific soil blends, water levels, and some prefer to be housed in a glass dome. If these conditions are met, the orchid blooms into a beautiful flower. But if these conditions are not met, the orchid will wilt and die.

JC is my orchid. On a good day, when all of his optimal conditions are met.... When there is a perfect amount of sensory stimulation (but not too much!), when there is an expected routine that is adhered to, when there are no surprises and all is calm, when HE gets to "call the shots"... He is a wonderfully expressive child who loves attention and experiences life full force.

But on those days where the optimal conditions are NOT met... JC is a different little boy.  The slightest change can cause outburst, tantrums and meltdowns.  Busy environments lead to overstimulation and Overstimulation leads to complete shutdown.  Communication is difficult even on the good days, but on the bad days... Communication is non-existent so screaming, pushing and hitting are all commonplace.   Everything is too much for him to handle.   I struggle to understand why. Which condition is not being met?  Is it because our schedule changed, because he isn't getting enough "regulation" from sensory play, or because the weather changed?  Most times I never know. I just hope that whatever it is passes.

My job as Mommy is to also be the "florist". I try to maintain those optimal conditions to maximize the good days.  I love the days when my little orchid blooms.  So I try even harder on the bad days to level out the conditions and minimize the impact, and hope that the bloom comes back again.

SPD.... Could it be more? How SPD can Affect Speech, Attention, and other behaviors

Now that we know what Sensory Processing Disorder is, and how it can affect a child's day to day activities, lets talk about how it can affect other aspects of a child's life - even mimicking disorders like OCD and ADHD.

SPD and Speech Development:  

JC has a significant speech delay.  He is doing well and is learning new words each week through therapy but he seems to still struggle with certain sounds which may require him to utilize motor skills which he has not yet mastered.  If you think of the normal course of a child learning to talk... they spend months "hearing" speech, months "watching" your mouth when you speak, and months prepare their own mouths for speech by babbling.  They also develop their own motor muscle skills through mouthing objects and eating.  Now imagine a child with SPD, like JC.  JC spent months being preoccupied by pain stimuli from his food allergies and health problems related to that.  He spent months crying to tell me that his world just wasn't right.  He spent months NOT eating.  So you can see how having SPD affected JC's speech even before he was ever able to speak.  He never received those auditory or visual cues that are the building blocks of speech because he was "distracted" by other stimuli.  He also has some motor skills problems that affect both eating and speech, but SPD early in life certainly contributed to his speech delay as well.
Another key aspect of speech development is processing language that is heard. With children who have issues with sensory processing, there may also a breakdown in the way the brain interprets auditory input. For example, if you imagine yourself at a party or in a crowd, you are able to key into someone's voice and maintain a conversation by "tuning out" the remaining sounds. However, for someone with SPD that ability is minimal. Therefore, they hear all sounds at once. Imagine yourself in a crowded elevator with the music playing and 5 conversations happening at once. You may hear a jumbled mess of sounds but picking out words or sentences will be very difficult.  Now imagine that you are an infant learning to speak in that elevator.  The inability to discern and process those individual sounds makes understanding, learning and then repeating very difficult.

SPD vs ADHD:

Similarly to the difficulty in discerning auditory cues, another aspect of SPD may be the inability to discern visual cues.  Both of these issues may manifest during school years as a failure to focus or pay attention.  In most cases ADHD is suspected but in many of these cases the true culprit may be SPD.  The difference between the two isn't seen in the symptoms, since they can both exhibit the same synptoms.  The difference is in the cause behind the symptoms.  Does the child show a difficulty concentrating on a constant basis or only when overwhelmed by sensory stimuli?  Does sensory activity help alleviate this symptoms?  Its the Who, What, When, Where and Why that goes into a diagnosis that makes the difference evident.  This is why it is important to be aware of SPD and the possible implications it may have for a child.
I have heard it said that SPD is the new ADHD, insinuating that it is an overused diagnosis that explains away behavioral problems.  But I would suggest that SPD has in fact been an overlooked problem for years and that many diagnosed with ADHD are actually suffering from SPD.  In fact, one study found that over 95% of children who had been diagnosed with ADHD showed improvement after occupational therapy.  This suggests that at least some component of the ADHD diagnosis was actually SPD.

SPD or OCD:  

I can tell you that I have questioned many times whether or not JC may have OCD.  There are times when I cannot alter our daily schedule without a meltdown.  There are times that I have to backtrack and re-do the same thing again because it didn't happen the "right" way the first time. For example, if we leave the house and I push the button to open the garage door I hear a wail of screams.  JC usually pushes the button and if it doesn't happen that way, he cannot move forward until it does.  So, we close the garage door and HE pushes the button again.  There are many of these little nuances that all add up to a very long day at times, but is it really OCD?  Most likely it isn't.  It is simply a manifestation of SPD.

The best way that I have seen this link described was this:
If your child is hypersensitive to information coming in through her senses — that is, she perceives a threat from a touch or sight or sound that others would find harmless — she may set up routines and defenses for herself that could be mistaken for OCD. Additionally, if she has problems with planning out how to do a particular activity, she may become strongly attached to the one way of doing it that she has already worked out, or she may stick stubbornly to activities that are much simpler.
A child with OCD is obsessed with things that aren't real and develops compulsions to deal with them, whereas a child with sensory integration disorder is bothered by real things in her environment and develops routines and defenses to deal with them. If you can change those real things, you can most likely change the behaviors.

This is EXACTLY the case with JC.  Changing the environmental factors affecting the behavior (perhaps the anxiety of the morning routine) may lead to a reduction in that behavior (insisting on opening the garage door himself).  However, one developmental psychologist that we recently met with believes JC to have an anxiety disorder with OCD tendencies. I'm not quite convince of this just yet. But I do see the possibility. (This sounds much like JC:  http://www.ocdsite.com/how-to-identify-ocd-symptoms-in-toddlers/)

SPD and Autism

Autism is usually characterized by 3 things: impairments in communication, social interaction, and by repetitive behaviors (such as self-stimulation: "Stimming").  Each of the 3 are required for an Autism diagnosis.  Sensory issues may play a large role in any of these factors, but a person with autism usually experiences many other symptoms besides sensory issues.  For example, according to "Love to Know Autism" a child with autism may have limited to no speech, difficulties understanding word contexts and developing a vocabulary, a need for strict routines, obsessive interest in an unusual activity or problems with social cues.  But a child with SPD alone may only experience issues with sensory input. (more about The a difference between Autism and SPD)

Distinguishing between each of these disorders is very difficult as a mother. I feel so blessed to have a wonderful pediatrician and great therapists for JC who help me navigate through these issues.

References:

http://www.chicagospeechtherapy.com/chicago-speech-therapy-the-effects-of-sensory-processing-disorder/

http://www.netplaces.com/sensory-integration-disorder/look-alike-problems/obsessive-compulsive-disorder.htm

http://www.sciencedaily.com/releases/2005/05/050513103548.htm
http://sfari.org/news-and-opinion/news/2012/new-rules-allow-joint-diagnosis-of-autism-attention-deficit
http://www.spdfoundation.net/otherdisorders.html

Messy Play Day

Messy Play with Shaving Cream. Less than a year ago, JC wouldn't even touch it. He now squishes it around eagerly ... For a short time. 

What is the Difference Between Sensory Processing Disorder and Autism?

What is the Difference between SPD and Autism?

The answer to this question is easy... I have no idea. Autism and SPD are both neurological conditions that can impact the way the brain perceives and responds to information.  But what are the differences?

This topic is of special interest to me.  I am currently struggling with whether or not Sensory Processing Disorder explains all of the intricacies of JC's behavior.  For example, at 18 months the assumption was made (not by me, but by medical professionals) that he would most likely develop autism because of his severe sensory issues and speech delay.  He was also showing several "red flags" on the M-Chat  at that time. But at his 2 year checkup, his pediatrician verbalized her surprise that he had shown marked improvement on his M-Chat scores and was not inclined to test him for Autism.  I believe that because of the early intervention and intensive therapy both during sessions and at home, he has shown so much improvement that Autism is no longer an assumption, but merely a possibility (and yes, it is still a possibility).  There have been new and worsening behaviors over the past few months and I can't help but wonder (and by "wonder" I really mean "over-analyze" and be "paranoid" about) whether or not he may actually have signs of Autism.  So the research behind this blog entry was as much for me as it was for any reader.  I needed to know the answer to the question: What is the difference between SPD and Autism?

I started my research with definitions:

One Autism publication that I found describes autism as "a group of developmental disabilities that affect a person's ability to understand what they see, hear and otherwise sense."
Wikipedia describes Sensory Processing Disorder as follows: "sensory information may be sensed and perceived in a way that is different from most other people. Unlike blindness or deafness, sensory information can be received by people with SPD, the difference is that information is often registered, interpreted and processed differently by the brain. The result can be unusual ways of responding or behaving, finding things harder to do. Difficulties may typically present as difficulties planning and organizing, problems with doing the activities of everyday life (self care, work and leisure activities), and for some with extreme sensitivity, sensory input may result in extreme avoidance of activities, agitation, distress, fear or confusion."

Am I the only one that thinks those two definitions sound exactly the same?

I have to say, those medical professionals who tend to believe SPD is a subset of another disorder may have a good point.  If we can't determine a difference by definition, then how can we diagnose SPD as a singular diagnosis?  However, I tend to believe that SPD can be a stand-alone diagnosis, even though it isn't spelled out in black and white.

So what does the research suggest?

Research shows that 80%+ of children (4 out of 5) diagnosed with Autism also have sensory issues.  But the reverse is not true.  Only 2 out of every 5 children with SPD are also diagnosed with Autism (1 in 20 children have SPD while 1 in 50 are diagnosed with autism according to a new data).   For boys though, the prevalence of both disorders almost doubles.
So there seems to be a definite difference in the prevalence of Autism and SPD, and the two are certainly not the same, but the question remains, "What is the DIFFERENCE between SPD and Austism?"  How can I know that my child, who has SPD, doesn't also have Autism?

I have researched and asked questions of therapists and medical professionals and this is the most reliable answer that I can find:

The Difference between Sensory Processing Disorder and Autism:

Autism is usually characterized by 3 things: impairments in communication, social interaction, and by repetitive behaviors (such as self-stimulation: "Stimming").  Each of the 3 are required for an Autism diagnosis.  Sensory issues may play a large role in any of these factors, but a person with autism usually experiences many other symptoms besides sensory issues.  For example, according to "Love to Know Autism" a child with autism may have limited to no speech, difficulties understanding word contexts and developing a vocabulary, a need for strict routines, obsessive interest in an unusual activity or problems with social cues.

I hate to say it, but this sounds a lot like my JC.  Are his behaviors signs of Autism or just quirks?  I don't know... but I will continue to research and seek out professional opinions until I do know for sure.  But for now, I am feeling much more knowledgable and prepared to address his issues as they arise and to be the best advocate possible for the care he needs.

Update:  JC was actually diagnosed with Autism Spectrum Disorder.  For more information, click HERE.

Resources:

http://en.wikipedia.org/wiki/Sensory_processing_disorder
http://www.cbsnews.com/8301-204_162-57575282/1-in-50-u.s-school-kids-has-autism-govt-survey/
http://autism.lovetoknow.com/sensory-integration-disorder-autism
This is a great study that I found to describe the connection between symptoms of SPD and Autism actually studied the behaviors associated with SPD and how prevalent they were in children with Autism vs children without Autism.  Although most of the behaviors were described in the Autistic children, many were also found in the non-Autistic children.   http://www.sinetwork.org/pdf/tomcheck_dunn.pdf

Messy play: Tactile Aversion Therapy

Nothing shows Tactile Aversion and Defensiveness quite like messy play.  Notice the 2-finger pincher grasp, the hesitation to touch anything but the powder and the immediate "escape" response when the applesauce touches his fingers.  What the video doesn't show is the coaxing that occurred before he would even sit at the table with the food.  He has become accustomed to this type of messy play and is usually able to participate for a few minutes, but knowing that he can say "all done" and have his hands wiped is a very important aspect of the "trust" that he feels which allows him to do this.