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!