Our Journey with Autism and Avoidance Restrictive Food Intake Disorder

It's been a while! Life got busy, and I stopped writing. A lot has happened!! JC is now 10 and he has worked hard to overcome so much of what he struggled with as an infant, toddler and young child. Food, on the other hand, continues to be a huge issue. A few years ago, he was diagnosed with a relatively new eating disorder known as ARFID (Avoidance Restrictive Food Intake Disorder. As it is such a newly recognized disorder there aren’t many treatment options. Especially because he also has Autism, Anxiety and suspected PTSD and OCD. Jaxson began refusing food at 14 months old. Coincidentally that’s when I was undergoing chemo for Ovarian Cancer. All of the specialist believe it was a combination of sensory issues, digestive issues (with vomiting constantly and bloody stools), combined with a need to add a level of control to his chaotic life during that time that made his brain determine that food is harmful, and only certain familiar foods are “safe”. By the time we were able to determine the source of his digestive issues (food allergies) and fully understand his sensory issues, the damage had been donw. It isn’t about preference. It’s about survival for his brain. He literally panics, curls in a ball and shakes if we present new foods. It’s is a phobia, resulting from trauma related to food. We’ve tried sensory therapy, feeding therapy, cognitive therapy. We even went to an eating disorder center, who told us they can’t help him until the anxiety is under control (umm. Isn’t that what you are supposed to help with?!?) We tried to get into a study at Harvard, but they wouldn’t take him because he has Autism. Another study refused him because he is not underweight. It feels like everything is a dead end, meanwhile he lives on a handful of foods and a nutritional supplement drink. We recently tried what felt like our last hope. A specialist in the UK has the highest success rate of anyone, and he provides virtual therapies. We finally had success! It took a lot of planning, dedication and flexibility - but JC tried 20+ new foods in a 6-8 week period!

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.  

Reflections of a Mother

This is well worth the read: http://www.autismsupportnetwork.com/news/he-struggles-hes-my-hero

What a touching, honest and heartfelt depiction of this child and his mother's love. JC has high functioning Autism.  His struggles pale in the light if so many. I can relate to this mother's explanation of good days and bad days. Days when JC says new words, eats new foods, plays without screaming, asks for help. Those are days when my heart beams with pride and amazement at how for he has come. And then the days of tears because he can't get his shoes on but won't allow me to help, or screams because someone touched or moved his toy, or the constant attempts to elicit a response of some sort when it feels like I am taking to myself and all he is doing is babbling or screaming.  The bad days make me so thankful for the good days.  And I love every bit of him. I'm thankful that the bad days aren't worse, I enjoy the good days and I thank God for every day. 

I have never told anyone this, but before we had my older son, my husband and I were having fertility issues. We had tried for 2 years to have a child. We had finally decided to do in vitro fertilization. During that time I asked God to please bless us with a child. Even if he needed a special home for an angwl with special needs, I would love any child and be the best mother possible.  We became pregnant the month before we were to start in vitro fertilization. We had a beautiful and healthy baby boy. He is now 7 and he lights up my world. But God remembered my promise, and also blessed up with JC 5 years later.  And I am trying to live up to my promise to be the best mother that he deserves.