A Ventography!

Just two moms letting off some steam


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RANDOM ACTS OF STUPIDITY



When Brody was five, I decided to enroll him for a “pretend” Kindergarten year at our local elementary school. During this time, he was having difficulty with expressive and receptive language, hypotonia, gastrointestinal issues, yeast, stimming, sensory issues, and was on the GF/CF/SF diet. I hoped sending him to Kindergarten twice would give him a chance to catch up to the other children and give me time to work on his health issues.  
 
My husband and I were excited about his new school. After an exhausting IEP meeting and discussing his health issues and the importance of his diet, we left thinking we had hit the Kindergarten jackpot! The school understood us and the needs of our child. We were leaving him in the hands of “true professionals.” This school year was going to be a winner!

Whomp, whomp…

His speech teacher and an administrator called me in one day for a little chit-chat. I went in, guard down, because I thought these gals had my back. The chat started out fine, but soon took a mind numbing detour. We went from talking about his class to them making extremely unprofessional comments.

Naively, I had talked to them about yeast. No big deal, right? They had a look of pure disgust on their faces. They definitely did not understand what I was talking about. Their response to the discussion – “Ew, gross!” Well, you can imagine what my face looked like. 

I’m convinced they thought he was extremely contagious and should be locked up in an infectious disease ward. 

What came next was the icing on the cake. Since starting school, Brody had picked up a new habit of sitting in his chair with his hands between his knees and rocking back and forth. I had talked to his private ABA therapist about this and she thought it had something to do with calming down his senses. 

The school professionals on the other hand just wanted to know if “…anything would come out?” I couldn’t believe my ears. What were they insinuating about a five-year old boy? 

You would have thought the above incident would have led me to packing up his Batman backpack and saying adios. Oh, no. I decided to continue enduring random acts of stupidity.

Over the next three months my son went from a happy boy to miserable little guy who was now adding new inappropriate behaviors on a daily basis. Many behaviors that had disappeared with ABA were reappearing with a vengeance.  I was growing increasingly frustrated. Like a big dope, I was too afraid to say anything that would rock the boat. I feared my complaints would be taken out on Brody.

Adding to my frustration were the food infractions happening weekly. I had worked hard on his diet and sadly I soon realized the school was not taking it as seriously as I was. The staff had been warned about how sneaky Brody could be when it came to food. If he smelled something delicious or got a glimpse of something tempting he would turn into a stealth sneak machine and go out of his way to get his little mitts on it. Garbage cans were prime picking grounds.

I understand that a teacher can not devote sole attention to Brody. But for Pete’s sake, he was only in school for part of the day and never even made it into the lunch room. How much food did they have to guard in the classroom? The teacher made me feel the diet was ridiculous and not worthy of her time. She probably even figured Mom was not going to know if he got into a little something. Wrong! 
 
The straw that broke the camel’s back finally occurred in December of that year. Brody had spotted and zeroed in on some cookies that were in the teacher’s closet (ironically, the ones I had baked for the teacher for Christmas). As soon as his Para turned her back, boom he was on it like a shark on chum. Within 24 hours we saw severe regression. He displayed behavior I had never seen before. He spent the next afternoon rocking back and forth making horrible, gut wrenching noises. 

This might sound odd, but I was relieved when my neighbor came over and saw him in action.  She was truly shocked by what she was witnessing. She had never seen him act like this before. In a sick way, I felt validated. Maybe I wasn’t crazy after all. Diet did affect my child.

He never stepped foot into that classroom again.


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OAT, PORPHYRINS, RBC, UTM… WHAT?

HEALING BRODY – PART 6

A few weeks after my first DAN! conference I found myself sitting in the office of a prominent DAN! doctor. Brody was quietly playing at the train table, oblivious to his surroundings and how his life was about to change. I was as nervous, as I was excited.  I was about to embark on a journey of discovery. What was Dr. “R” going to uncover about my son? What secrets lay behind Brody’s dark circled eyes?

The appointment was a whirlwind of information – too much to process in a short amount of time. Tom and I discussed Brody’s health history  and concerns with Dr. “R”. Brody was poked and prodded. We were instructed to collect Brody’s urine for 24 hours, complete some recommended reading and continue with the Gluten/Casein Free Diet.

The healing process had begun. In the meantime, we would have to wait patiently for Brody’s results to come in.

Everyday I would check the mailbox for the long-awaited “Holy Grail” of info – the stepping-stones I needed to finally put a plan of attack in motion. Without this treasure trove of information, I was a ship adrift at sea.

The day finally came. The package arrived. It felt like Christmas in March.

Tests (AKA Getting a Baseline)

  • Organic Acid Test (OAT)
  • Autism Panel – Porphyrins Profile (toxicity biological marker), Pterins Profile (Neopterin & Biopterin-Immuno-Inflammation), 80 HdG and 80HG (DNA & RNA Damage), F2-a-Isoprostane (membrane oxidative damage)
  • Red Blood Cell Elements
  • Plasma Sulfate
  • Plasma Cysteine
  • Comprehensive Food Allergy Test
  • Stool Test
  • Ann Connolly Study
  • Titre Levels
  • GF/CF  Peptide Test

The Results

  • Positive for high levels of heavy metals in his system
  • Unspecified disorder of immune mechanism (body develops an inappropriate response to a substance)
  • Encephalopathy unspecified (disease, damage, or malfunction of the brain – majority of cases arise from infection, liver damage, anoxia, or kidney failure.)
  • Allergic gastroenteritis and colitis
  • Nutritional deficiency
  • Yeast, yeast and more yeast

Translation

  • Brody was a sick little boy. Sadly, he was unable to tell me how lousy he felt  because he didn’t know what feeling good was. His entire life, mainstream medicine had ignored his body’s pleas for help and never once, did they consider how Brody’s underlying health issues may have caused his ‘autistic’ symptoms.

The Initial Plan of Action

  • Heal Brody’s gut.
  • Continue GF/CF and eliminate foods Brody tested allergic/sensitive to. (hard-core 100%, no cheating)
  • Add probiotics,vitamins and minerals (Acetyl-L-Carnitine, Pro-Bio Inulin Free, Super Nu Thera, CoQ10, fish oil, and calcium powder)
  • Diflucan (anti-fungal)
  • Spironolactone (anti-inflammatory)
  • Glutathione cream
  • Chelation  (DMSA suppository twice a week to remove heavy metals)

Brody had just turned 5, and according to the internet, he was past the point of recovery. I had missed the so called…”window of opportunity.” This idea could not be further from the truth. Healing can take place at any age. Do not become discouraged. Within a month or two of starting biomedical, we were beginning to see small, but positive changes in Brody. His very limited vocabulary was expanding, his diarrhea was no longer an everyday occurrence and he engaged us more. Our little boy, who had been written off by so many, was emerging from his cocoon. Tom and I were beyond pleased.

To be continued…
To read more Healing Brody click here.


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DAN! – RETHINKING THE STATUS QUO

HEALING BRODY – PART 5

I had spent the last few years living in the land of denial and being bombarded by doctor excuses for Brody’s health issues. One day, my good friend Debbie, talked me into going to a DAN! conference. I thought “Why not? It will be fun to get away for two days and have some adult time.” Little did I know, my world was about to be turned right side up.

We sat down in a convention room and waited for the conference to begin. I don’t remember who the first speaker was, but I do remember one specific question, “How many of you in here have a child or grandchild with autism?” Debbie and I raised our hands and sheepishly looked around. Would we be the only ones? My mouth dropped. There were too many hands to count. There was an electrical charge and energy in the room. Debbie and I grabbed hands. We were not alone!

All of us in the room shared one thing in common – autism, and that we were starving for information.

As the day progressed, I became re-energized. The fight that had been sucked out of me over the years was returning. Autism was much more than a brain disorder (as I had been led to believe) and I had the ability to make drastic changes in Brody’s outcome. I felt like I regained some sense of control. DAN! encouraged parents to question the status quo thinking running rampant through much of the medical establishment.

DAN! validated many of my concerns that had been dismissed by the pediatricians. I was not crazy and there were underlying health issues contributing to my son’s autistic behaviors. Unexplained rashes, constant vile smelling diarrhea were not normal. It was time to get to the root of problems and not put on another band-aide.

DAN! changed the way I looked at Brody and autism, and gave me hope and a sense of belonging. It was the kick-start I needed to begin my journey to regain Brody’s health. I couldn’t wait to get home. Brody was going on the Gluten/Casein Free Diet ASAP. I wasn’t sure what to expect, but I was optimistic.

To read more Healing Brody click here.


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DEAFENING SILENCE

HEALING BRODY – PART 5

To refresh your memory, we had recently returned from a house hunting visit down south. During our trip, Brody had done something very strange… he began jutting his arms out in front of him like he was being electrocuted. This was the moment I knew I could no longer ignore my mother’s instinct which was shouting at me that something was wrong. Upon our arrival at home, I called Brody’s early intervention therapist to tell her about the arm jutting incident. Did she think autism was a possibility? Her response, “I don’t think so. It’s just too early to tell. He doesn’t display the characteristics of a “typical autistic.” Give him more speech therapy and he will progress. Remember, he is a boy and typically they talk later than girls.”

I wanted to believe her, but I was still unsettled. So, I made another useless appointment with the pediatrician. The doctor reviewed Brody’s chart and we discussed his health history. She felt strongly that his frequent ear infections had “probably” contributed to his speech delay. Since he recently had tubes put in and his tonsils and adenoids removed, she wanted to give him time to catch up. There was no need, at this point, to be an alarmist she told me.

Once again, I brought up Brody’s stomach issues. “Well, what about his daily bouts of foul-smelling yellow diarrhea? The acid burns on his bottom?  Could this be indicative of anything?  It seems to be lasting an awfully long time.”

She chuckled, “No, no, no. It’s probably toddler’s diarrhea. I see this all the time. He will grow out of it.”

I then demonstrated the weird arm movements Tom and I had witnessed a few days earlier. She asked if we had seen Brody do it again. “No,” I replied. She had no explanation for the behavior and asked if I had any other concerns. I had the feeling she was thought I was looking for things to be wrong with Brody.

“Could his language delay be a result of being knocked unconscious?”  I asked. I re-told her the story of what happened to Brody six months earlier.

It was around 6:00 pm and Brody was dressed in his pajamas playing in our family room. He came running over to me to give me a hug and tripped.  In slow motion, I could see the events unraveling in front of me. There was nothing I could do to stop him. I was utterly helpless. Brody fell head first into the corner of a table with a tv on top of it. He fell backwards and his body became limp. I was quiet, waiting for him to get up and cry. But he didn’t. Brody just lay there with a large dent in his forehead, his eyes closed. I interrupted the eerie silence with my scream.

I shook him hoping to spark life back into him. My husband grabbed him and I ran to the phone to call 911. I pleaded with them to get there as fast as possible.  I have never been so frightened in my life. We could not get him to respond. I was hysterical. The EMTs arrived and made the decision to have the Life Flight helicopter land in our front yard and airlift him to Johns Hopkins.

Brody was now coming to, but the EMTs did not want to waste valuable time taking him by ambulance. I remember getting in the helicopter and seeing the faces of my neighbors as the EMTs carried Brody out on the stretcher. They did not want to meet my eyes.

We stayed the night at the hospital watching Thomas the Tank Engine videos and were released early the next morning. Brody had been diagnosed with a mild concussion. The doctor was not overly concerned about future ramifications and did not recommend a follow-up plan. “Kids are pretty resilient,” he assured me.

Brody’s pediatrician listened to me re-telling the story and responded by saying it was highly unlikely his concussion contributed to his lack of language. Her recommendation was to continue using early intervention services. And that was that.

I was noticing a pattern in my life. Most of the doctors and therapists I came in contact with did not put much stock into my concerns about Brody. They were very dismissive and at times, defensive if I questioned them. Why was that?

Is it because modern medicine has become too focused on a “one size fits all approach?”  Why is the majority of the medical establishment not willing to dig deeper and look past surface symptoms? It is imperative for health professionals to listen to the thousands of parents pleading for doctors to hear them and not shrug off their concerns. Is this too much to ask?

If no one was willing to dig deeper into my concerns I would have to take matters into my own hands. My new mission was to find someone who would listen and finally, help me. 

To be continued.

Healing Brody – Parts 1-4


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AUTISM: NOT ON THE MENU

HEALING BRODY – PART 4

It had been a long day. Tom and I were on a time crunch. We had been relocated by his company and had  3 days to find a new home. After 8 hours, looking at house after house, we called it a day.

On our way back to the hotel we decided to stop at a restaurant for a quick bite to eat. We were all pretty beat and after eating junk all day, I figured we deserved a real meal. Poor Brody had been stuffed with Cheerios and pretzels throughout the day and it was time to get some veggies into his stomach. As Tom and I gazed over our menus, something odd caught my eye. Brody’s arms were jutting straight out in front of him. I reached over and gently pushed his arms back down. A little knot started forming in my stomach.

Seconds later, Brody’s arms jutted out again. He couldn’t stop. It looked like he was being electrocuted. He had lost control over his limbs. I looked around the restaurant, not sure what to do, what to think. Was anyone looking at us? I tugged on Tom’s sleeve. Tom looked at Brody and then back at me. “What’s he doing?” Tom remarked. I was as perplexed as Tom. Whatever was going on, I knew it was not good.

I held my emotions in check until back in the privacy of our hotel room. Then, the water works were turned on full blast. I couldn’t catch my breath. All my fears I had tucked away were released.  Tom looked at me like a deer in headlights.

The restaurant  incident was my first acknowledged “oh, oh” moment; the moment I instinctively knew something was different about Brody and “oblivious bliss”  was no longer an option. There was something more going on here. I checked my book of excuses and realized I was all out.

So what was going on? What was behind Brody’s odd arm movements, his lack of speech, covering his ears and not turning towards you or acknowledging you when you called his name?

I thought back to a conversation I had with a friend a month before. She was the first person who ever mentioned the word autism to me. My response to her was always, “Oh no, I don’t think so. He doesn’t do what autistic people do (like I really knew). Plus the Early Intervention Program (Brody was enrolled in) would surely have picked up on it. Don’t worry… he’s just a late talker.”  I had an excuse for every concern she had.

I looked at my reflection in the bathroom mirror. It was time to face the music.

Part 5 to come.

Healing Brody  Parts 1-3


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“OBLIVIOUS” BLISS (AKA BEFORE I STARTED USING THE INTERNET)

HEALING BRODY – PART 3

The first year of Brody’s life was “oblivious” bliss.

Tom was in remission, my two older boys were thriving, and Brody was a cute, chubby, bundle of joy. I was happy. Life was good. I didn’t want anyone or anything to upset the new order of things.

Little did I know, a perfect storm was brewing.

We had a few “minor” health issues pop up for Brody before his first birthday. Rather than addressing the issues head on or even questioning them, I swept all my concerns and fears under the rug. I could not bear the thought of more bad news or visits to the hospital. I had my fill. The previous year, dealing with Tom’s cancer, had sucked all the life and fight out of me. I was suffering from Health Scare Post Traumatic Stress Syndrome.

But… ignoring my mother’s instinct and not questioning the doctors was a big mistake. Compared to Tom’s cancer battle, I felt my gnawing mom concerns seemed silly and perhaps paranoid.

Tom’s last radiation therapy could not have been timed more appropriately. His last treatment was the day after Brody was born. To celebrate both milestones, I adopted a “don’t worry, be happy” attitude. I was only willing to bask in the sun of my new “normal”  worry-free life. The previous stormy  year was a consciously  forgotten memory.

Brody was born via c-section at 37 weeks. He was delivered early because he wasn’t moving around enough and his heart beat had periods of irregularity.

Within minutes of his birth, he was whisked away for observation because he had wet lungs. This led to 24 hours in the NICU hooked up to IV’s, allowing me very little contact and not being able to nurse him. It was devastating to me, but to the nurses, no big deal. They tried to reassure me this was very common and not to be alarmed. He would be fine. Well maybe they were right. Compared to Tom’s cancer it wasn’t a big deal.

Finally, I got my son out of the NICU only to be told he had newborn jaundice. Once again, I got the pep talk that it was very common and not to worry. They would put him under lights and voilà he would be perfect. Well, okay compared to Tom’s cancer…

It took two weeks for the jaundice to “clear” up. But interestingly, up to a year ago he still occasionally would still get a yellow tint to his skin.

At two months, Brody went in for his scheduled vaccinations. Within hours, Brody had a high fever, was inconsolable, and let out a high pitch scream any time he was touched. I can not even begin to describe how loud and ear-piercing the screams were. Never before had I heard this sound. It rattled my nerves. I called the doctor in a panic who very calmly told me he was having a reaction to a vaccination. He suspected it was the Pertussis part of the DTP. He also went on to soothe my fears by telling me it does happen and it is perfectly normal. He would document it and recommended Brody no longer receive the pertussis vaccination, but the other shots would be okay. As he hung up the phone he said, “Give him some Tylenol and he’ll be fine.” Well, okay – compared to Tom’s cancer…

At three months, he was diagnosed with Strep A (unusual for young babies according to the doctor). The doctor prescribed antibiotics, told me not to be a “nervous Nelly” and shooed me out the door. Well, okay – compared to Tom’s cancer…

I had noticed thrush before in Brody’s mouth, but now it was out of control. I tried every “potion” out there and it took months to eradicate the yeast. Also, during this time I began to notice Brody would suffer from frequent bouts of diarrhea. With the diarrhea, came acid like burns on his bottom. He would cry in agony any time I would wipe or bathe him.  Once again, the doctor soothed my fears by explaining that Brody had nothing more than toddler’s diarrhea. It would eventually go away. Well, okay – compared to Tom’s cancer…

At ten months, Brody had surgery for his hypospadias repair. The anesthesia worried me, but I tucked those fears away reassuring myself that children all over the world have surgery everyday with no complications. Luckily, the procedure went well and he seemed to bounce back from it quickly.

As a mom of three boys, I couldn’t help but to compare Brody to his older brothers. Why was their first year of life not as “eventful?” How come they did not have the same type of health issues?

Why did I allow others to assure me everything was fine, when they were not. In hindsight, I wish I had not ignored my mom instincts and been more proactive and informed before making important decisions regarding Brody’s health.

To read more – Healing Brody

Photo by Ana Luiza Santana


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TWO PINK LINES

 HEALING BRODY – PART 2

In June, 2002, two pink lines announced unexpected news… a baby was on the way.

That was all I needed to go into full, healthy  pregnancy mode. I checked off all the no no’s I could think of – wine, caffeine, hair color, and tuna fish. I took my pre-natal vitamins (when I could stomach them) and drank my orange juice to make sure I was getting my folic acid. I naïvely believed an unborn baby’s health was the sole creation of the mother. Not once did I consider (or Tom for that matter) how his lifestyle could impact our future baby’s health and development.

During my first trimester, Tom was diagnosed with Non-Hodgkin’s Lymphoma. We were devastated and shocked. How could this happen to an athletic 34-year-old? So many questions and thoughts swirled through our heads. For the first time in our adult lives, we were faced with life or death decisions. Mortality slapped us in the face.

Besides worrying about my husband’s health and comfort, I worried about the impact of exposing our unborn baby to chemo and radiation. Was it safe to sleep in the same bed after Tom received his treatments? The doctor tried to calm my fears and told me not to worry, but secretly I didn’t believe him. I knew Tom needed me, so I put my concerns on the back burner.

I was beyond stressed. The fear of losing my partner, friend, and father to my children was unbearable. Deep down I knew I had to put on a strong front. Not only for the family, but for the sake of our unborn child. Stress could not possibly be good for our developing baby.

Within weeks of Tom’s diagnosis, I began to spot. A new fear surfaced. It gripped my soul. Was I going to miscarry? I remember driving to the doctor’s office, tears uncontrollably escaping my eyes. Painful sobs racked my body. I pleaded to God. “Please not my baby and husband.”

I arrived and sat in the car for a moment, wiping away the evidence of my breakdown and began to prepare myself for the dreaded words- “There is no heart beat.”

To our relief, we never heard those heartbreaking words. Our baby was alive and I swore right then and there, no matter what, I would always be his protector.

To read more – Healing Brody


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A BAD CASE OF THE WHAT IFS

HEALING BRODY – PART 1

Over the years, many questions have haunted me. How did Brody become a part of the statistics… the 1:88? Was it something I could have controlled? Because nobody knows the cause(s) of autism, parents are left to ponder a list of possible culprits.

What if…

  • I never had cerebral vasculitis (associated with autoimmune disease)
  • Tom (my husband) never had cancer and received chemotherapy and radiation the entire time I was pregnant
  • Months before Brody’s conception, Tom and I never received the vaccination for Lyme disease that was subsequently pulled off the market for safety concerns
  • We didn’t live in a state notorious for its high rate of autism
  • I had the benefit of knowing we were living in a house contaminated with black mold

What if Brody…

  • Didn’t have fetal distress, causing him to be delivered via c-section 3 weeks early
  • Wasn’t born with wet lungs and treated with antibiotics in the NICU, preventing him from nursing on the first day
  • Didn’t have jaundice for the first 2 weeks of his life
  • Didn’t have constant bouts of thrush
  • Didn’t have a documented adverse reaction to the DTP vaccine at 2 months of age
  • Didn’t get a strep infection when he was 3 months old
  • Didn’t require 3 different surgeries (hypospadias repair, tubes put in twice) under anesthesia
  • Didn’t knock himself unconscious at a year and a half old

What if…

  • I listened sooner to the clues his body was giving
  • I listened to my “mom intuition” instead of the pediatricians who told me everything was fine
  • I acted sooner

Did my son ever have a fighting chance?

The nagging what ifs are my constant companions because… I will never know if  it was one thing, two things or all the above, that played a role or contributed to Brody’s autism. I will probably never know what the tipping point was. Or… if and when he regressed. But, I do have my suspicions.

I also have regrets. One of them, is of time lost. Why didn’t I act upon “the autism” sooner. Was I blind or a visitor in the land of denial?

Did I miss the subtle clues because he was such a peaceful baby (the envy of all my mom friends)? The baby I could take anywhere, anytime and he would just go with the flow. I really was the luckiest mom in the world (and still am). But, was it because he was so easy, I possibly missed subtle hints of regression?

I realize now, I have to look at the past for clues to heal the present.

To be continued…


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OUR AUTISM STORY… A SERIES OF DEFINING MOMENTS

We started this blog in August 2011. We had so many emotions, thoughts, and opinions bottled up inside that we just started spewing out posts. At that time, we didn’t have a clear direction and we weren’t sure how personal we wanted to get. As time has gone on and we’ve received your excellent feedback, we now realize that people want us to be more specific and personal. Apparently, our readers want to hear what Annie and Brody were like at their most challenging times and what they are like today.

This makes sense because we remember when we started on this journey, we loved hearing stories from other parents (and still do). They made us feel understood and gave us hope and the strength to keep going.

So we are going to take you back to the beginning and catch you up on all the details. Some of it will be painful to re-live but we also believe it will be therapeutic for us. It is easy to take for granted the subtle gains our children make. Remembering the worst times makes us more appreciative of what we have now. We hope to convey to our readers, dealing with autism, that you are not alone and there is always hope.

We’d love to hear your stories as well. We are going to start by telling you about the moment we first connected the word AUTISM to our children, our first defining moment with autism. Do you remember yours? What was it like for you?


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WHERE THE HELL AM I?

In a blink of an eye, life changed.

The odd behaviors, noises, rashes and diarrhea could no longer be ignored and we were out of excuses. Something was not right with Annie and Brody.

The unknown noise we had heard in the distance was no longer so distant. The noise became louder and louder. There was no escape. In our ears, the loud roar of a freight train vibrated. It was the noise an impending tornado makes right before it touches down.

Reality finally hit.

Our inner turmoil could be compared to being sucked into a whirlwind, shaken, spun and spit out.

Smack, boom, bang!

Where the hell were we all of a sudden? Looking around, nothing looked familiar anymore. Nothing made sense.

We had landed in the quirky land of Oz. Our version of Oz.

At that moment our new lives began. And FYI, we were unprepared for the emotional journey on which we were about to embark.

Run of the mill days were a thing of the past. Daily life was now filled to the brim with mystery, intrigue, anger, deception, sadness, shock, awe, joy and triumph; unpredictable thoughts, ideas and emotions overwhelmed us by the minute.

Poor Dorothy, we finally got why she wanted to get back to Kansas so desperately. Her Oz, just like our Oz, was filled with too much uncertainty and drama. (“Drama, drama, drama” as Brody would say).

Who wouldn’t want to return to an old “comfortable” place where life was relatively predictable? Just as Dorothy struggled to deal with finding herself in a new place, we did too.

If you hear the sound of a freight train, you better hold on tight to your child because you will find yourself in a place of unknowns, paying a high price for a t-shirt you didn’t ask for. Get ready to sport a shirt emblazoned with the following message -“My kid went to Oz and all I got was this lousy t-shirt.”

It sounds harsh, but on the days you are “autismed out” that thought may cross your mind.

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