In the beginning…….

To know me is to know my story.  To know the part of my life that forced me to grow up.  Forced me to understand what is important.  Forced me to stand up and protect my child and rely only on myself (and my husband) when it comes to her care. 

I was 33 weeks pregnant and deathly ill.  I couldn’t eat without puking, was working full-time, had horrible, sharp back pain that never ceased even when resting, was dead tired and had only gained 20 pounds in my pregnancy.  I was so done with being pregnant.  So when my water broke, I was actually relieved.  I was young and dumb and didn’t realize all the complications that come with a preemie.  But I was about to learn.

After 29 hours of labor, at 4lbs, 3oz, Marley came into this world screaming (thankfully) and no oxygen was needed.  But a bout of apnea forced the NICU to order a head ultrasound.  Just protocol for a preemie with apnea they said.  One week after delivery, they told me they are going to order another head ultrasound.  But again, young and dumb, I didn’t catch on.  So when Marley was two weeks old, the results were in.

Marley was a permanent fixture in the special infant care nursery and the nurses were doting on her as if she was their own.  I had just finished nursing Marley for only the second time in her life.  She was just starting to eat on her own with no feeding tube and I had a sense of peace that only oxytocin can bring.  All the bright florescent lights and beeping heart monitors could not dampen my euphoria.  She was mine.  She was beautiful.  And she was finally nursing.  

I was basking in that euphoria, rocking Marley in an old wooden rocking chair in the nursery when a middle-aged Asian female doctor came over and introduced herself to me as the pediatric neurologist on duty.  She sat down across from me and asked me abruptly “Where is your husband?”  I told her he was at work and she proceeded to tell me that she wished he were here.  She pulled up a seat across from Marley and I and began talking.

I only heard the beginning.  She began “We have had seven radiologists at Duke look at these head ultrasound findings because we simply cannot believe that she is doing as well as she is with this amount of damage to her brain.  Marley had a Grade 4 IVH, Intraventicular Brain Hemorrhage.  That means the bleed has gone into two quadrants of her brain.  Here is some paperwork……”  I didn’t hear anymore.  My ears were ringing and I could hear the blood pounding in them.  I had a fear I would drop my baby but I didn’t want to let go of her.  How could this be?  Everything has been fine.  What does this mean?  Is she going to die? My mind was racing.  I was clearly shaking.  The tears were starting to well up and a sweet young nurse came over to the rescue.  She could see that I wasn’t listening anymore.  She gently took the baby from me.  I think she thought I was going to drop her.  I stood up and said “I need to call my husband.” 

When I got into the hall, I doubled over.  I felt like I couldn’t breathe.   I called my husband at work and told him I needed him to meet me at home immediately.  He was further away but there when I arrived.  I sat down next to him and said ”I hope this is the hardest thing I will ever have to tell you……..”

Oh my husband.  That man is a rock.  He is my gift from God.  I really don’t remember what he said, but he put me at ease immediately and then had tons of questions.  I handed him the papers that the doctor gave me and he said “We have to go see her.”  Visiting hours were over because it was late by now, but I called and they said to come.  We drove back to the hospital in the dark.  I was weeping. 

Chris and I sat with our new two-week-old daughter for a long time.  She looked so precious and peaceful but now I was so scared I could barely comprehend what was happening.  That moment changed me forever.  I knew right then I would fight for her.  It was a powerful feeling of fierce protectiveness that I felt.  I still feel it to this day. 

However, I didn’t want anyone to know.  I didn’t want their pity.  After all, we didn’t know how it was going to affect her, right?  Why worry people?  This went on for about two weeks until my husband couldn’t keep it a secret anymore and starting telling his family.  I was horrified.  I didn’t want people telling me they were sorry.  “Don’t be sorry! She is my baby!  She is going to be fine!  I will make sure of it!” 

There are things in this life we cannot control and this control freak was learning that lesson the hard way.  She stayed in the hospital another two weeks and they discharged her on Thanksgiving.  The best blessing of all. 

But just before they let her go, they asked if I wanted her to get the Hep B shot now or at the pediatrican’s office in a few days.  I asked “what is it?” They told me it is a required shot.  And this mama who had just said she would protect her (now 5 lb.) baby said “sure, go ahead”. 

And so the story goes…….. 

Getting the Dairy out of the House

Okay, all you cheese lovers.  I know you think I am nuts.  But I am a mom of three and all three of my kids have benefited from this strategy.  And now, 7 years after starting on the road to recovery, I have finally agreed to get all of the dairy out of the house---for everyone---for good.  Yes, that means for myself and my husband too, who would eat mac & cheese and ice cream everyday if he could.

Just getting started on the road to recovery?  In my opinion, this is the number one intervention for a child on the autism spectrum or with ADHD or asthma or allergies.  Above OT, above speech, above behavioral therapy….above it all.  I realize that all kids on the spectrum are different and I am a firm believer that what may work for one child may not work for another.  However, in my many years on this journey, I have yet to meet a family that truly tried this intervention and did not see a positive result.   

So many of our ASD kids have a leaky gut which is allowing the large casein protein to go undigested and possibly pass through the intestine wall and directly enter the bloodstream.  From there, it goes directly to the brain causing behavior issues.  (which is also true for gluten by the way.)  But even if there is no leaky gut, many of our ASD kids have either IgE (true) allergies or more commonly IgG food sensitivities.  The best test for a food sensitivity is a trial and error test.

Dairy takes 10-14 days to leave the system so I recommend doing a trial of three months with no dairy.  No ice cream, no butter, yogurt, cow’s milk, or even any food with milk baked into it.  Check things like hot dogs and deli meats as they often have dried milk as an ingredient. 

So would you like to know my family’s results? 

My oldest and youngest both have IgE (true) allergies to dairy (in addition to other foods), so their benefit is obvious.  Here is the not so obvious.  We removed dairy from my middle daughter’s diet when an ear infection would not clear up.  It had been 2 months with a double ear infection.  We were about to try our FOURTH antibiotic at the recommendation of the pediatrician (with the threat of ear tubes), when I decided to take the dairy out.  The infection was gone within a week.  She was 12 months old.   However, she does not have autism, so at age 2, I decided to let her have dairy again for convenience sake.  And she is such a picky eater that I would have fed her anything!  But that backfired.  She had horrible sensory processing problems and her eating was not getting any better.  At age 5, we did IgG food sensitivity testing on her and she came back extremely sensitive to many foods.  (A sure sign of leaky gut.)  I had no choice.  We took out dairy, gluten, and many other offending foods.  

 

Here is the good part.  She no longer complained of weekly headaches.  She no longer was so hyper that she ran around our house for an hour after dinner.  She no longer had horrible night terrors which she had suffered from for years.  She no longer complained of tummy aches.  The chronic constipation is gone.  And she understands that she is “allergic” to milk and it will make her feel sick.

And my husband and I?  We feel much better as well.  My husband no longer has a rash on his torso that he has sported for over 20 years.  The dermatologist told him it was simply due to sweating while working out and there is nothing he could do about it.  Guess what Mr. Dermatologist?  It was a food sensitivity!  When my husband accidentally got a smoothie with yogurt on a business trip, the rash was back until the dairy had time to leave his system again.

As for me…..my menstrual cramps have dramatically decreased in severity.  This is something that I suffered with since my teenage years and by simply removing dairy, I no longer have to live drugged up for a week a month.  I can only guess that the insane amount of hormones in cow’s milk was affecting my own hormones.  And I was buying organic!  

Remember that you can get calcium from leafy greens, fortified cereals, salmon and even chicken.  And there are wonderful milks out there including coconut, almond and hemp milk all of which have a great amount of calcium as well and are delicious!  Or you can take a daily calcium supplement.  Just try to stay away form calcium carbonate as it can cause kidney stones. 

So give it a try.  I don’t think you will be disappointed.

Alice in Wonderland

I thought I would start my very first blog with something I wrote a few years back when the movie "Alice in Wonderland" with Johnnie Depp came out.  It was 2010 and Marley was almost 8.

Marley had been asking for weeks to see Alice in Wonderland at the movie theater.  She had never been to a movie and Chris was very hesitant to allow her go because of the movie's reputation for being dark and the loudness that a movie theater brings.  Marley is sensitive to loud noises.  But in my heart, I knew she would enjoy it and I was willing to give it a try.  So I packed up some GFCF, egg free snacks and off Marley & I went to see Alice in Wonderland on a Saturday afternoon.

She was so excited and well behaved and it amazed me that this was the movie that she chose above all others to see. But then again, she is a smart girl with a good heart just like the characters of this movie.  And just like the characters, many people cannot see her for who she is because of her social awkwardness and her out-of-the ordinary likes & dislikes.  She is not like us.  She is more pure and makes no qualms about being different and doesn't do things just because she is told.  She does them for reasons more pure.  Because they give her joy or because of the love she feels.

Then there was how this movie made me cry.  Dream the impossible was the message of the movie.  Alice says that she imagines ten impossible things before breakfast every day.  I do too.  And because both Chris & I dared to dream the impossible.....to make her a happy, healthy, communicative little girl....it has happened.  Don't get me wrong.  We had to slay the jabberwocky to get here too.  We had to stand up to some powerful voices that said it wasn't possible.  We had to turn down the advice of the mainstream medical establishment to put her on strong anti-depressant drugs. We had to feel the pain that Marley was enduring to make her feel better.  We had to work endless days and nights researching what was best for her.  We had to sacrifice material things to pay for her never-ending medical bills.  But when I see the end result....there are no words to express my gratitude to the powers that be.  Yes, she still has work to do.  But when I see her watch a movie, enjoying the dark humor and smiling and hiding her eyes at some points....I am reminded of how far we have come...and how much further we will go for this very special little girl.