Friday, May 31, 2013

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. )





Tuesday, May 28, 2013

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.




Tuesday, May 21, 2013

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.


Thursday, May 9, 2013

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.