Our Journey

This is the story of our little girl, now nine years old, who was diagnosed with Asperger’s Syndrome around the time that she turned three.

We share it in the hope that it will help others navigate the dark and difficult days that come when a child is diagnosed with Autism.

One question almost everyone asks me is this: “When did you realize something was wrong with your little girl?”

My answer?

“We never did.”

As much as we can remember, she was a very typical baby. She loved to cuddle. She loved to laugh. She adored her sister.

As she grew, I remember being puzzled by certain things she did that were different from her older sister. She seemed a little more stubborn, a little less likely to listen to us, a little more likely to get focused on what she wanted to do to the exclusion of what we told her to do. It was hard to understand how two children could be raised in exactly the same manner, yet act so differently. We never thought anything was “wrong” – we just chalked it up to personality differences and kept on rolling.

Although she hit all the major developmental milestones on schedule or before, she did not reach them as early as her older sister. We just assumed that “Number One” was precocious and “Two” was going to develop along a more typical timeline. Again, no concerns, no big deal.

I did notice around her first birthday that she did not always respond when I called. I told my husband that I was afraid she might have hearing difficulties. She had been plagued with ear infections as an infant, so it made sense to me that auditory issues could be present. He laughed and said, “She doesn’t have a hearing problem.”

“Really?” I responded, “How can you be so sure?”

“Watch this,” he replied.

He picked up the “M&M” candy bowl that we kept around for potty training rewards (for big sister) and rattled them – not very loudly – instantly she came running from the room where she had been playing.

It was a funny demonstration… and one that convinced me that any “issues” we had were strictly behavioral and not something more fundamental.

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As best I recall, I didn’t really think about it again until we were at the doctor’s office in the fall before she turned three. She was sick again, and we couldn’t get in to see our regular doctor. The doctor that was available was new to the practice and very young. Because of some previous experiences, she did not inspire a lot of confidence in me. She asked if we had considered having our baby screened for developmental delays. She said she didn’t like the lack of eye contact and interaction she was seeing.

I basically said (in my most diplomatic tone) that we were there simply to take care of the illness at hand – that my baby was just fine thank you. I chalked it up to an over-zealous new doctor, looking for something exotic and interesting to talk about.

We recognized and accepted the fact that she did not talk as much as her sister, but assumed it was because our firstborn was such a chatterbox that “Two” never got a chance to talk. She was bright, happy and exactly OK as far as we were concerned.

Of courses, the dreaded word “autism” was never mentioned at that visit.

At the time, I was pregnant with our third child, taking care of both girls (ages 2 and 4) and working in our family business. We had a wonderful sitter that came to the house two or three afternoons each week to help with the girls. However, at this time, it was beginning to register with us that our baby wasn’t interacting well on a verbal level.

She would talk a lot, but not to us (for the most part). She loved to watch videos, and would memorize long sections from her “shows” and repeat them to us. Often, she would drop a phrase from a movie into the conversation that fit exactly. Her comedic timing was incredible. (Later we learned that this is typical behavior in autistic children. The official term for it is “echolia”).

Like many moms of autistic children, I blamed myself.

I wasn’t spending enough time with her (I thought).

I believed I could “fix it” if I simply focused my time and attention on her instead of dividing myself in so many different directions.

So, I stepped out of our family business and became a full-time mom.

Later, I was surprised when our regular pediatrician recommended a developmental screening also. I distinctly remember that he seemed uncomfortable – almost like he didn’t want to talk about it – avoiding eye contact with me and trying to avert any questions. When I asked him exactly what the screening would hope to show he said, “Oh, there’s lots of stuff out there that could cause this…”

Then he mentioned the name of a disorder – I couldn’t tell if he said Oshlatters, Osgadders – now I know it was Asperger’s. Anyway, I went home and tried to look up something on the Internet, but had no luck, so I went ahead and scheduled the screening.

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The doctor we saw for the screening was a developmental pediatrician. She was an attractive, middle-aged woman, with a very kind demeanor. I remember that her eyes communicated compassion beyond anything I had seen in any doctor before. We progressed through the screening in fine fashion. I could see that the doctor was measuring intelligence as well as developmental issues.

As expected, the doctor told us our baby was extremely bright, and had developed intellectually at or beyond her age level. However, there were issues at hand to be discussed. We were given a diagnosis of PDD-NOS. I had never heard of such a thing and didn’t really even know what questions to ask.

I remember that the doctor seemed distressed at this diagnosis and muttered quickly as she gave me her card that I could call her if we needed to talk to someone further. It seemed so odd that all the doctors seemed so uncomfortable.

I asked what we should do to help. The doctor said that the only thing that really helps is early intervention. She recommended a few books we could read so that we could begin doing more at home. She told me we could go through further testing/diagnosis and thus be eligible for publicly funded services (I never was quite clear on what that meant). She also highly recommended that we enroll in a pre-school program because then it would force her to interact with other children and adults.

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Of course, when I got home and began my research, I understood why the doctors were so uncomfortable about it all.

PDD-NOS is an autism spectrum disorder (ASD), which is on the high-functioning end of the spectrum. I read one article that said PDD-NOS is the diagnosis given when the doctor can’t bear to tell you your child is autistic.

We were devastated.

And then within a short amount of time went into serious denial.

Our sweet, cuddly, affectionate little girl couldn’t be autistic.

Didn’t autistic children curl up in a fetal position, stay in a dark room and rock back and forth continuously?

The doctors simply could not be right about this.

However, as we learned more about Autism Spectrum Disorders (ASD’s) and looked more closely at behaviors exhibited, we came to accept the fact that the diagnosis did indeed fit.
My heart aches even today as I remember how hopeless it all felt.
In the past, we had always found a way to make things better for our kids.
If they had a boo-boo a simple kiss usually made it better.
If they bumped their head, we applied ice, cuddled on the couch for a while and soon it was forgotten.

Running a fever? Get out the Motrin.

Feeling a little sad? Let’s see if Mom’s got some cookies in the pantry.

Up until then, there was always SOMETHING we could do to fix whatever was wrong.

Now here we were, facing a murky, black tunnel that our baby had to travel through, and the doctors were essentially telling us that there wasn’t really much we could do to light the way.

What would be at the end?

Would she ever get better or would she get progressively worse?

What would her life be like as an adult?

What would happen to her if anything should ever happen to us (my husband and me)?

And the question we couldn’t even begin to let ourselves ask was the “Why” of it all.

So, back to the doctor we went – still not really believing the diagnosis, but desperate for more answers. The diagnosis was later changed to Asperger’s Syndrome… and we were given a few more ideas to try. We had already enrolled in the most highly recommended preschool in our area, and since this seemed to be the “treatment” of choice, we sat back to catch our breath for the summer and wait for school to start in the fall.

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As the summer drew to a close, we bought a pile of cute outfits, a new book bag, a lunch box, and we carefully labeled each item in our girl’s school supply box to get her ready for preschool. Number One was also starting kindergarten, so I was understandably sad about losing both my girls to the schoolhouse in one fell swoop. Thankfully, we had been blessed during the summer by the birth of our third child, a little boy, so I wasn’t left completely alone when school began.

Our preschool actually operated within our church, so the familiar surroundings helped our girl transition right in to the classroom setting. Her teacher was a wonderful, caring and patient lady that went out of her way to help.

However, in spite of all these positive elements, preschool never really worked for our baby. She had frequent meltdowns that disrupted the rest of the class. She was bigger, stronger, and much louder than the other kids – so they were afraid of her. The promised social interaction never really materialized. When I visited, she was always playing by herself in a corner while the other kids were elsewhere playing together.

Although every piece was in place to make this preschool the ideal solution, it simply wasn’t.

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But enough about the sad, frustrating days.

Things did get finally get better.

For two years, we lived with the situation as it was. Sometimes we really believed the diagnosis (when we had a particularly bad day). Other times, we were certain the doctors had lost their minds.

We had relocated to North Carolina and met some people whose son also had Asperger’s. They had experienced some improvement in his behavior through the use of food supplements and the removal of metals from his body (chelation). It all sounded a little bit weird and scary, but I felt compelled to do some research to find out if perhaps this might be something that would help.

After some searching and reading (again… thank God for the Internet!) I found an organization called Defeat Autism Now (DAN). Their approach in a nutshell involves uncovering and treating physical/biomedical issues that create behaviors associated with autism. They were conducting a “mini-conference” in Charlotte, so I made arrangements to attend. In the meantime, I continued to research and read all I could on the subject.

Among other things, many doctors who practice the “DAN Protocol” recommend a gluten-free, casein-free diet (gfcf diet); they encourage the use of specific vitamin and mineral supplements and they do extensive lab testing to determine if there is a problem with heavy-metal toxicity, bacterial overgrowth, yeast overgrowth or other internal issues.

The conference was amazing.

Stories were told of children that had never spoken… children that had never shown a bit of emotion or affection… children who were unresponsive on many levels… children whose behavior was absolutely out of control… children labeled by the mainstream medical community as “hopeless” – all had been helped (dare we say “cured?”) through this somewhat controversial treatment method.

I left the conference center that day with more hope than ever before.

I was determined to do whatever was necessary to see if this would make a difference for her.

Unfortunately every “DAN” doctor within a reasonable driving distance was booked solid for months on end. One of the speakers from the conference was nearby, but her waiting list had a waiting list! However in speaking to her, she encouraged me to begin even without the appointment. She recommended several great books to use as an initial guide, and so I headed home ready to begin.

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I was so energized by my newfound hope and confidence in this treatment plan that I walked in our house and announced that we were all going on this diet … and we were going to do it “cold-turkey.”

No more sugar.

No more junk food.

No more grain products (gluten).

No more dairy products (casein).

Basically, I got rid of almost everything we had in our pantry.

What was left to eat?

Basically fruit, vegetables, nuts and meat.

[Note: our initial attempt at dietary intervention was following the “Specific Carbohydrate Diet” (SCD). It was very effective, but hard to implement. Later, we dropped back to the GFCF (gluten-free, casein-free) diet which is still effective, but allows more freedom of choice in foods.]

To say that the implementation of this plan was difficult would be the understatement of the century. I had a full-scale rebellion on my hands! My kids went absolutely nuts from junk food and sugar withdrawal. I went even more nuts myself!

Trying to find foods that were organic, gluten-free and casein-free, completely free of sugar, and healthy was completely overwhelming (not to mention expensive, but I’ll talk about that more later!).

It was extremely hard – and almost felt impossible at the time, but watching what was happening to my little girl was worth every struggle.

She began talking to us not “at us” for the first time in her life.

Her eyes became clear, focused and bright – she was actually making eye contact!

Her nightly habit of bedwetting stopped immediately.

Her frequent meltdowns and temper tantrums all but ceased.

All of these things happened within the first few weeks of beginning the new diet. In addition to the changes in our eating habits, we also began supplementing her diet with a multi-vitamin specifically formulated for children who have ASD’s and we began giving her cod liver oil capsules (both recommended according to the DAN protocol for treatment).

I do not hesitate to say, the change was nothing short of a miracle.

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Several months later we were able to see Dr. Mary Megson (of Richmond, Virginia), one of the most brilliant people I have ever encountered. Our baby has been under Dr. Megson’s care for several years now and has shown steady, positive improvement.

Today she is an extremely friendly, bright and happy third grader. She has played soccer, basketball and become a great swimmer. She thoroughly enjoys performing in the limelight and has participated in several drama productions at our church. Academically she is at or above grade level in every subject. She is showing a particular giftedness in music as she has taken piano lessons and has experimented on her own with both the harmonica and guitar. She is also exhibiting a unique giftedness in artistic endeavors. She loves photography. She loves to draw. Her characters leap off the page with personality and charm.

Of course, no life is without its struggles. Academic achievement and giftedness in various endeavors is not unusual for children with Asperger’s. One of the greatest areas of difficulty is understanding and “fitting” in the social structure of life. This is something we continue to work on. She is not quite there yet, but she has come a long way. We have every confidence that her intelligence and empathy will help conquer this obstacle as well.

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So what is the end of the story?

We don’t know yet.

We still don’t know if this treatment will completely “cure” our baby or if Asperger’s Syndrome is something she will live with for the rest of her life.

Let me pause for a moment to address those of you who believe we should accept autism for what it is and stop trying to “cure” it. I understand the concept of accepting the fact that part of “autism” is simply a different way of understanding and relating to the world. I know that this is true to a degree because I see in my daughter this completely different way of thinking through life. This uniqueness is something we cherish and celebrate in our daughter. However, there are negative behaviors associated with autism that I believe can and should be ameliorated.

For example, prior to beginning this treatment program, I couldn’t take my eyes off her for even a split second when we were in any sort of “open” area. Why? Because she would disappear. Just like that… in less time than it takes to think about it, she would be gone. Every trip to the grocery store, mall, church or park held the potential for ultimate disaster (losing her). It was stressful beyond belief. As a result, we rarely went anywhere. She never went by herself to play at a friend’s house. We could never “relax” and enjoy the children outdoors unless we were in a fenced area.

Since being on this treatment program, this has become a complete non-issue.

Another example: prior to the treatment program my typically sweet little girl would frequently fall apart emotionally – for what seemed like no reason at all. She would cry hysterically, scream, make her body limp or fight to get away from us. These behaviors could pop up anytime or anywhere without any warning. Eventually we understood that these behaviors typically resulted from sensory overload. We found ways to limit the “triggers,” but could not totally eliminate them and so had to live with these unpredictable “melt-downs.”

Again, these behaviors made us hesitate to go anywhere.

I don’t know how or why it works, but something in this approach to meeting the physical needs of my child produced a behavioral effect that has opened many doors of opportunity. She can play outside with a friend without a need for me to “hover” over them constantly. She can even go play at someone else’s house. We can do fun things as a family without worrying about losing her or when the next meltdown will occur.

This method of dealing with the difficulties often associated with Asperger’s has been an incredible blessing to our family… and that is why we have started this blog.

It is now estimated that one in every 150 children have some form of autism. We know and understand the hopelessness some families experience because we were there. For those of you walking this path, we want you to know that there is hope.

I wish you could meet our baby yourself and see what a miracle she is.

There is never an instance in which someone meets her that they don’t walk away with a smile.

Her friendliness is contagious. She never meets a stranger.

Today, I feel no fear or dread when I think about my daughter, my heart only swells with pride for all she is and all she will become.

But it’s not enough for me to just see this in our girl. We want to see the miracle that has occurred in her life happen for thousands (do we even dare say millions) of other children who live with autism. While I have had many opportunities to talk to friends, relatives, neighbors, acquaintances and people that I just happen to run into, I would love to see many, many more able to relax and enjoy the uniqueness of their child as we enjoy our sweet girl.

Through this forum we share our story in the hope that it will give you the courage to step out and try it… and the information you need to implement these changes successfully.

There is hope for your child.

It is possible to break through the autism barrier.

It can be done.

You CAN do it.

God bless you as you begin… and God bless that beautiful, precious child He has entrusted to your care.