Introducing… Curly Girl! (Part 1)

Curly Girl, age 3

In honor of World Autism Awareness Day, I’d like to take a few moments to introduce Curly Girl.  She’s the one who started us down this road, so she gets to be first. 🙂

When I was a little girl, I dreamed of someday having a boy & a girl.  The girl I was going to have would be frilly & girly, neat & pleasant, quiet & well-mannered.  She would have tea parties and play with baby dolls.  She would wear pink lacy dresses and twirl around and around.

When I grew up, I got married, had my boy, and then, in 2001, my baby girl was born.  I dressed her in pink lacy dresses and bought her baby dolls.  But that’s where the dream ended.

Curly Girl was born in the deep of winter.  She seemed to pick up every virus that floated by.  An eye infection at 2 weeks, RSV at 2 months, pneumonia and hospitalization at 4 months, followed by a constant string of ear infections and more pneumonia.  Her babyhood seemed filled with antibiotics, steroids, breathing treatments and doctor visits.  Still, she was happy and developing right on track.

As Curly Girl grew, she started getting a bit quirky.  She was fascinated with her hands, but wouldn’t use them to clap or feed herself.  But she would clap our hands together over and over.  She didn’t play with her brother.  She didn’t really play at all.  At 15 months, we weren’t too concerned.  Maybe she was just a little behind from being sick so much.  Then things turned.  She seemed to get worse instead of better.  She seemed to be in her own little world. By 18 months I was a little concerned. 

At age 2, Curly Girl still did not talk.  She no longer responded when we talked to her.  She didn’t seem to communicate with us at all except for crying.  Our doctor was concerned about her hearing.  We had a full work-up by an audiologist & ENT.  Her hearing was perfect.

By age 2 1/2 we were all deeply concerned.  Her doctor finally asked the question that broke through to this world.  “Does she point at things?”  Simple enough question, but the answer was no.  At 30 months of age, Curly Girl did not use a distal point to communicate needs.  That was it.  The thing that tipped the scales from delayed to autism.  She was diagnosed with PDD-NOS (Pervasive Developmental Disability-Not Otherwise Specified), a form of autism.

Our family doctor, who diagnosed her, is also a DAN! doctor.  He is specially trained to treat autism using biomedical treatments.  He referred us to Early Intervention specialists in our county, and he also recommended that we try a special diet.  We got a crash course in leaky gut.  He said we should remove gluten & casein from her diet.

Gluten is a protein found in wheat, rye, barley, and a few other grains.  Casein is a milk protein and is found in all dairy products.  At the time of Curly Girl’s diagnosis, her entire diet consisted of milk & wheat foods.  Crackers, macaroni & cheese, bread, yogurt and gallons upon gallons of milk.  Remove it all???  What would she eat?

But we were desperate parents.  We were willing to try anything.  And so we began down the road of dietary intervention.

At first, we didn’t think it was helping.  But we stayed on the diet.  After being GFCF for a few months, Curly Girl drank an entire glass of milk.  And she ran around the couch for 36 hours.  I’m not kidding.  Then she crashed and acted like she had a hangover for about 3 days.  Okay, I guess the diet is working after all!

Curly Girl has a “Leaky Gut”.  This is when the intestinal walls are damaged, causing them to become more permeable than they should be.  This damage allows the proteins gluten and casein to travel into the bloodstream undigested.  These two proteins are opioid proteins.  When they get into the bloodstream, they behave like opiate drugs.  Think morphine, opium.  You wouldn’t give a 2 year old morphine to get high, but when we gave Curly Girl milk & crackers, that’s what we were doing. 

There’s much more to Curly Girl’s story, but this post is getting very long.  I will continue her story next time, so stay tuned!


6 thoughts on “Introducing… Curly Girl! (Part 1)

  1. Wow! I’m surprised at how much of this story that I’d forgotten. Knowing her now and reading this, it’s obvious that you and RadioDad have seen more than one miracle in her lifetime. Keep up the great work you are both doing. I’m so proud of you!

  2. Love getting to know your curly girl here. I could have written most of it with dd2. You know I believe and pray for her to be a miracle in the making. She has the whole world ahead of her and God as her Father.

  3. Wow, its so cool to read Curly Girl’s life story from her beginning. She is an amazing young lady who amazes me every time I am with her!! She has definitely grown to be a very special young lady!! You have done a wonderful job with her!!

  4. I remember when I called you and you told me she was still running around the couch. You have done so much research. I know that this blog will help so many people who don’t know where to start. Love you Girl!

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