EnduringTheSilence.com A blog about autism with acceptance, love, faith, and fight.

My daughter was a perfectly healthy, very “typically” developing baby girl.  She talked very early and very often.  She spoke in full sentences.  She would wake me up in the morning saying, “I love you!  I love you Momma!”  And it was music to my ears.

She loved to “dance” with me and she would ask me to dance by coming up to me, taking my hands, and saying “I dance with you?”  It was so sweet.

In October of 2010 she went in for vaccines.  She received a large number of vaccinations in one day.  She had a severe allergic/adverse reaction. She could not stand for over 24 hours.  She refused all solid food for 3 full days.  She ran a high fever.  She swelled up so badly that her face looked like you had stuck two ginormous red apples on her cheeks. When she would try to pull herself up to stand, she would fall over. It was extremely frightening.

In that moment, she stopped talking, she stopped making good eye contact, etc.  It was not gradual.  Let me repeat that, It was not gradual.  One moment she was fine, the next moment she was totally non-verbal.

Let me tell you now – I was not/am not anti-vaccine.  I have two older children that had all of their vaccines. And I rescued dogs for many years and trust me when I tell you, you do not want to see the effects of parvo in puppies when their previous owners have failed to vaccinate them.  There are certainly times and places for vaccination.

But there is nothing like watching your child’s life be in danger from an allergic/adverse vaccine reaction – to make you question how we do things in this country and if things could be improved.  For instance, I do not understand why we vaccinate our babies for more things in one sitting, than we will give our dogs in one sitting.  How does that make sense?

I believe the fear of loosing “herd immunity” keeps our government from being more open and honest about the very simple fact that vaccines are dangerous for some people. Adverse reactions do happen (they even talk about them on the papers they give you, if you look at the fine print). I myself, had a horrible allergic reaction to the flu vaccine years ago, so I’ve lived it. Don’t tell me it can’t happen.  One minute my daughter had very “typical”, even advanced development.  And the next she was completely non-verbal.  That is a fact. I think there might be multiple things that came into play to cause that to happen. But it would be very difficult for someone to make me believe that the severe allergic/adverse reaction, did not play a role in what happened to her, considering the fact that her symptoms appeared in that instant.

But let me be clear:  This is not a blog about vaccinations. While I am very concerned about how this happened to her, the past is not my focus. My focus is moving forward and what we can do for Ella now.

From that day in October 2010 through December 2010, she was completely non-verbal.  The verbal loss and some eye contact loss was instant.  Her condition continued to deteriorate in terms of progressively less eye contact and engagement with the world around her.  By the end of December 2010 I could hold her for over an hour and never get her to look at me once. She didn’t seem to care if I held her or not.  It was as if her body was there, but “she” was not.

I was desperate to find something to help her.  I was searching for information on allergic vaccine reactions and I found where a mother told a story almost identical to ours with Ella.  She said that she put her daughter on a dairy-free/wheat-free diet (that I now know is known in the autism community as GF/CF diet, or gluten-free/casein-free diet).  And she said that her daughter had amazing improvements.  So I thought, why not?  It can’t hurt to try.  I admit I didn’t really think it would work, but I thought it was worth giving a shot.

We started her on the diet late New Year’s Eve night, January 1st, 2011.  And what occurred has been nothing short of a miracle. Within 24 hours she was making eye contact again. Not all the time, but she was doing it.  Where she hadn’t been doing it at all.  I remember the first time like it was yesterday. I spoke and she looked at me.  She turned right at me and looked me right in the eyes, then after a bit, looked away. I said to my husband, “Did you see that? She just looked at me! She looked at me!”  It was the first time in a long time that she had done that. I was so amazed I hardly believed that it happened and even though my husband had seen it too I asked him several more times, “Did you see that? She looked at me!”  I think I was just so excited and wanted to keep hearing the confirmation that I didn’t just imagine it.  :)

Within 3 days on the diet she began to make sounds again. Ever since the allergic/adverse vaccine reaction, the only sound she had made was to cry when she was hungry.  But she began, ever so gradually, to make little noises.  It was very much like an infant learning to talk again – but slower.

It is now July 2011 and she’s made MAJOR progress since January 1st of this year.  Everyone that knows her has described this diet as a miracle for her.  She still has autism.  But she is “with us” again.  She enjoys her family, plays with her siblings, smiles, laughs, and the amount of time that she spends “zoned out” is continuing to gradually decrease.

Now she makes lots of sounds, and occasionally she will say a word or two.  Usually every 4 or 5 days she will say a couple of words.  The specialists still consider her basically “non-verbal” because she is not using these words regularly to communicate her needs.  But at least now she is attempting sounds and improving, even if those improvements are in the tiniest of baby steps.  Communication is her biggest issue.  She wants to communicate.  She is a very clever, very intelligent little girl. But she struggles badly with communication.

The end of last year was horrible.  But now she is “with us” again.  She smiles, she laughs and she expresses happiness. I feel as if we are slowing pulling her back from the invisible monster that tried to steal her from us.  I know that she likely has a long road ahead of her, and a hard battle to fight, but I will fight it alongside her for as long as God lets me.

I started this blog because autism is becoming so common, that there are many people out there just like me, dealing with their child being newly diagnosed and dealing with everything that comes along with that.  And I thought that perhaps here, I could find a way to work through my thoughts, and share about this journey. Sometimes I find that it provides clarity to write, and I could certainly use some clarity right now.  

I am actively trying to learn all that I can, so that I can help her express herself better and do the things that she wants to do in life.  I plan to write about some of the things that we’ve found, tried, read, watched, etc.

I welcome your thoughts and comments on posts.

Thank you for joining me on this journey,

Debbie