My girl, Jellybean, was 5 years old when the worst of it hit her. The first noticeable symptoms began after a nasty Winter stomach virus, but when I think back, I can recognize signs well before then. With autoimmune disease, there is commonly a trigger event - an illness, period of stress, etc. - which initiates dramatic symptoms. This particular illness (an intestinal virus) swept through our family home quickly, lasting only about 12 hours for each person. We lounged around for a few days afterwards and laughed at each other as we sipped soup and ate bananas in an attempt to regain strength after the great purge. It took about a week for most of us to recover fully. But Jellybean did not recover well.
I consulted Dr. Google and learned that her symptoms (bathroom related) were an indication of malabsorption and that they were commonly seen after a stomach virus. No longer concerned, I moved on without another thought. Three weeks later, however, there was still no change. I began to pay more attention to her nutrition and saw improvements through that effort. Again, I felt my concerns alleviated and moved my attention to other things.
Over the next few months, several things began happening with Jellybean. Her behaviors changed significantly. I am ashamed to admit that I thought she was simply a little kid being bratty. Life is busy in a large family. And suddenly, she was the difficult child. They do take turns, you know.
I'm going to list her major symptoms here. If you spend any time with little people, you will know that some of these behaviors can be "normal" from time to time. Perhaps that can help explain to others why it took so long for us to develop a deep concern...
1) Irritability and crying about everything.
You parents know how awful this can get. While at first, family members respond with compassion, the tendency over time is to become frustrated and angry. The child appears to be obstinate and particularly naughty or "spoiled" and time-outs and sharp words start to increase but without positive affect. This was definitely the case. I found that I was less compassionate as time went on and her siblings were the same way. To all appearances, she was being deliberately naughty.
She had never been a big fit-throwing kind of kid. And suddenly, she was. Big, hairy fits over nothing. All the time. Except when she was actually injured.
2) Lack of appropriate emotion.
Blank and staring eyes. A lack of response to tenderness, frustration, sorrow or joy within the family. Moving about the day as if in a bubble. little empathy or sorrow for hurts caused and not much interest in others. No inclination to apologize. Not even a raised eyebrow over a crying sibling (or mother). Very little recognition of particular happy things. She would cheer with the rest of the gang to a point and then retreat into her world where she would quickly forget a significant upcoming event or delight.
3) Lack of appropriate sensory response.
She would cry over the tiniest issues during the day but seem to feel no pain during physical injury, such as a dramatic fall down the stairs. I would joke that she must be made of rubber because she would bounce up and move on. She did not want any help and did not want to be touched. She would say she was fine (or nothing at all) and then walk away. No tears. No frown. Minutes later she would wail uncontrollably about a toy that was out of place. I saw her get bloodied knees without even pausing to check out the damage. I saw her take a fall and hit her head and walk away, unsteady, but with no change in expression.
4) Language regression.
She has always been a very verbal child but she stopped communicating well. She forgot her letter sounds and we were unable to continue with her reading lessons. She forgot common words and would frequently replace them with words that did not fit. One example off the top of my head was her use of the word "ballet" to replace having a bowel movement. She would tell me that she was "going to ballet" and I didn't understand her real need, which was to have my help in the bathroom, thinking she just wanted to dance. I simply did not understand her language anymore. She began to communicate less and less.
5) Repetitive language and actions.
"Mom, make her stop!" How many times can a child sing the exact same 3 words to the exact same tune? There is no limit. I know. All children do this to a degree because they delight in repetition. But there is a difference between that normal behavior and what she was doing. She would sometimes rock and sing the same nonsensical words for hours with only brief interruptions, ignoring all appeals to stop. Combined with repetitive actions like banging body parts against a wall or floor, it was becoming a real concern.
6) Lack of Response or "Hearing Loss".
This one was tough because everyone truly thought she was just being incredibly naughty. She would not respond to someone calling her name. Even if someone called loudly a foot away from her head, she would just keep singing and playing in her "zone." It was maddening. If I wanted her, I had to physically bring her to me. The older kids kept asking if something was wrong with her hearing but there was no evidence of that other than selective listening. So we initially thought that she was ignoring purposefully.
7) Bed wetting.
She was potty trained at a normal age and then suddenly regressed. Every single night. She was devastated by it because her younger sibling was out of diapers while she was still struggling. But she could do nothing to change it and I stopped trying. There was clearly no sticker chart or bed wetting system that could help her. I changed my approach from proactive cheerleader to compassionate cleaner-upper, assuming that it would pass before she was a teenager.
8) Daytime wetting.
This was more of a concern for me. After having been daytime trained for years, she began to randomly wet during her playtime. She just wasn't engaging with her body's cues anymore. And it did not seem to concern her when she wet through her clothes.
9) Poor appetite.
She was never a big eater and young children go through periods of famine or feast. But she never seemed to get to the feast part. And yet her belly was always gigantic...
10) Distended belly.
Or some might call it "Ethiopian" belly. The body is stick thin but the abdomen is giant. It is not uncommon for little ones to have a round belly (since they are unconcerned with fitting into little black dresses) but hers was rounder than normal.
11) Inability to focus.
"Look at me, Honey. Look at mommy." Okay, she would say. And then she couldn't do it. Her eyes went everywhere. We'd start again and I'd make a secret goal of 3 seconds for her to look me in the eyes. She could not do it. As I said before, we had to stop her school lessons. She simply couldn't remember what she did from one second to the next.
I don't know the technical qualifications for amnesia but I'm going to use the word anyway. She could no longer remember basic words, phrases, prayers, lessons. She could not recall events. Her sense of time was nonexistent. It was as if the previous years of her life never existed.
13) Bathroom issues.
Her malabsorption issues did improve with better dietary choices but it was very difficult to get her to eat anything other than cheese so I wrote off some of the odd evidence as "cheese induced." Our other kids had gone through periods of particular pickiness (I'm sure many of you can relate) and I simply didn't feel that concerned. She did have frequent diarrhea which alternated with light colored stool. In hindsight, she had always had similar bathroom patterns... so this wasn't entirely new or startling. Her doctor visits were always positive. I didn't have a tangible reason to be alarmed.
14) Not growing.
Some families have short kids or slow-growing kids. That's not how our kids grow. Six out of seven grew fast and tall right away. We just thought this girl was different. And she was... but for the wrong reasons. She hadn't grown at all in almost 2 years. Her feet weren't growing either. While the other kids grew out of clothes seasonally, I never had to clean out her drawers. When her friends' teeth started to fall out, hers stayed firmly in place. Little things. But they began to add up.
Now, before you start thinking what a horrible mother I am... please consider that these things increased in severity over a long period of time. There was no dramatic change from one day to the next. And after raising four kids before her, I knew well the challenges of raising little ones. There are many of these symptoms which could have been simply disciplinary issues on a healthy day. But almost a year went by. And by the end of that period, I was frantically, desperately, tearfully consulting Dr. Google again...
Our family doctors had never given an indication that something was wrong with her health, so my only thought was that something was developmentally wrong. In every search I tried, I stumbled across symptoms of autism and was able to place her at various places on the low end of the spectrum. I researched for hours daily. The last thing I wanted to do was to deliver my daughter into the hands of a behavioral specialist without being completely armed with knowledge.
I knew that she didn't have some of the key symptoms of autism but she did have a number of related behaviors. There simply was no "right" answer. There is no child that fits all the puzzle pieces perfectly. I admit that I began to panic but I held off just a little longer from getting professional help. I kept thinking: She wasn't always like this. I remember my daughter as she was. Something has gone wrong.
As I began to do more reading about autism, I learned more about dietary recommendations for kids on the spectrum. And those recommendations began to look more and more like what I had already implemented in my own diet. The dietary changes that had literally changed my life. I also read that there is a high percentage of celiac children who have also been diagnosed with ADHD and autism. The "What is going on with my daughter?" became a "Why am I so stupid? Why didn't I think of this before?" because I knew well from my reading that gluten intolerance is GENETIC. And that in families with the auto-immune response to the gluten protein (yes, that would be me), it is common for a percentage of family members to have full blown celiac disease.
I immediately pulled all gluten from her diet...
Within a week, almost all of her symptoms were GONE.
I can't write or read that last sentence without a lump coming to my throat. It has been a year since we made those changes and I still sit here crying. My little girl was drifting away. She was sinking into a place where I could not reach her. She was changing and fading. And then... She was back. Unless you have been there, I just can't tell you how that feels. To have my girl look into my eyes and tell me that she loves me. And to hug me with strong arms. And to take delight in her own life.
I will never forget that first month of healing. She walked around our home and community as if she had been asleep for years...
"Mommy! Where did that picture come from!"
"Look! Look! Our bathroom curtains are so pretty! Have you seen them? Did you make them?"
"Did you get a haircut? Do I need a haircut?"
"Can I do my reading?"
"What is this called? And that? And tell me what all these animal names are!"
The world was new and fresh and exciting. She walked around laughing at "new" discoveries. She took an interest in others around her. She climbed up on my lap. She ate ravenously. And her eyes... they looked into mine. And she saw me.