My Life In Pictures
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Dairy As Disaster For Taylor
Posted by Taylor · 10 Comments
This post is from Robin Rice, Taylor’s mom.
As a mother, I know the heartbreak of learning that your child may have challenges through Autism or Asperger’s Syndrome. Like most parents, we were given little direction in our search for a cause or remedy. Our great breakthrough came through a small miracle that was begun before Taylor was born: My monthly letters to her from the time I learned I was pregnant. I discovered that we had changed from soy milk to regular dairy at age 1, when her pediatrician said it was okay. In reading back over the letters for clues as to why she was fine at 12 months, and then stayed at 12 months, I realized we had made the switch. Though our doc didn’t feel it was relevant, we decided to try no dairy. Within 3 days, there was a remarkable difference. Our doctor still said it could not be that, and would not pay for us to explore it. We went to Georgetown Pediatric Hospital to meet with a pediatric gastroentorlogist, and he shared 3 different studies that were 20 years old (35 years old now!) that detailed Taylor’s reaction. He said that for her, it caused a mucus in the brain, so that the electrical connections could not be made. With the dairy gone, the mucus cleared, and Taylor began to “make the connection” within three days.
Not everyone with Autism or Asperger’s is affected by dairy this way, but there is good reason to test it on any child. What can it hurt?
To further illustrate m point, please see the following letters that were exchanged in a two week period of early February, 2010. They are between a mom viewer of Taylor’s videos and myself. In it, I share what I wish I could share with every mother after 15 years of Taylor’s continued improvement.
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Dear Robin and Taylor,
I know you receive so many emails such as mine. My 2 year old daughter was recently diagnosed with “mild” autism. While I have known something wasn’t quite right since she was 10 or 11 months old, autism baffled me, as did the screenings for it. For example “do loud noises bother her?”. Well, a nearby train didn’t make her flinch, even though I could hardly stand it. Yet, her baby sister’s coos sent her through the roof. I should have understood, but I didn’t. My friends and family kept saying “all children are different and develop at different rates”. Still, I knew down deep in my heart, she was different.
She went through some speech therapy 6 months ago, before her diagnosis, for only a few short weeks. My husband was then laid off, and our new insurance would not cover therapy because she was not “autistic”. This was the time I knew I had to face “it”. After the holidays, I took her to the pediatrician with my long list, and there it was, the autism diagnosis. It was a mix of emotions. Thank goodness I had something to tell people when they didn’t understand why my child didn’t look at them or speak. But, yet, as I began to read about autism, I feared what this meant from a bullying standpoint, and from how my amazing daughter may not be able to understand me, and will probably think I’m stupid!
I found one of your videos on youtube, and I watched it 3 times. You are captivating, and amazing, and I appreciate you so much. I am still scared and unknowing, but I do know, I love my daughter more than anything, I will help her all I can, to understand herself and to communicate, and I will always consider this a difference and not a disability. At the moment, it’s hard to do so, because of the challenges of raising a toddler that cannot communicate. She’s incredible. So are you. And I hope one day I am able to hear her speak in the same eloquent way you have.
Thank you for helping me understand. I wish you only the best in life, and I will never forget you!
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Hello Dear Libby! How nice to hear from you… this is Taylor’s mom, but she read your note this am and was deeply touched. We have a new video of her life and story coming soon, so look for it… and be encouraged! Lots of great things can happen! Thanks again for writing us and telling us your story… hard and beautiful! Robin
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Hi Robin and Taylor,
I watched the new video, and I cannot stop thinking about the diet issue. I know that I have always avoided dairy and rich foods because they made me feel horrible, and lately something has been screaming in my head “dairy dairy dairy!”. So, I am going to cut it from my daughter’s diet, and she will be going through allergy testing this week. We are awaiting several different programs, and I hate that she will be 3 before the best of therapy begins, but she is a sponge these days, so I am hopeful.
I was curious, do you have any siblings, Taylor? I have a 9 month old daughter who is possibly on the spectrum, but seemingly much lower than my first daughter at this point. I think one of my largest fears is how to keep things fair as far as foods eaten, attention given, etc. when it comes to the two, if the youngest happens to be more “normal”. And I completely agree – “normal” doesn’t exist! I realize “different” people, which is common in my family, are loved, and talented, and amazing! I’m glad you embrace it.
Libby
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Hi Libby… this is Robin… When it comes to medical, it isn’t about what is fair… it is just one of those things that can’t be played with. We NEVER let Taylor have milk products, even though her brother loved cheese, and we let her know in very clear terms that it was her true downfall, and simply could not afford to risk it. We had three studies that were 20 years old that showed it creates a mucus in the brain which is why so many of the electrical connections don’t get made. It is NOT lactose intolerance, it is far worse and different for some kids. She had times as a teen when she tested it, but she understood… at least that is how we did it. It changed our lives, so I was a real warrior with it. Overall, my philosophy is, each child is different, has different needs, and they will be met in differing amounts–there have been times when my son got the lion’s share, too, when he needed it. It evens out if you meet each child’s needs, not a perception of fairness. Hugs, Robin
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Dear Robin,
That makes good sense to me. I am cutting dairy out today to see how things improve. She will be tested shortly, but I’m eager to try it now. I feel so certain that she has at least a casein allergy. I know I do! Thanks for being patient with someone who still feels new to parenthood, much less autism!
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Dear Libby,
Parenting is not for the faint of heart!!! Best wishes, I think you won’t regret it! And remember, even if the alergy testing does not show up (again, this is not intolerance, it is a whole different beast, so it may not be tested for), if YOU know this to be true, just go with that. Your gut knows… more than anyone. Hugs, Robin
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Dear Robin,
An update… I took Carrie off of dairy almost a week ago, and for the past 3 days, she has done nothing but snuggle with me and is sleeping again!!!!!! She is so much more calm and is able to sleep. That is HUGE!!!!!! I knew just how impactful it was when I looked over at my husband last night while Carrie laid her head against him and he had tears in his eyes.
Today, the allergist called me to tell me that she doesn’t have a single allergy, but your words remained in my head, and as long as I see what I am seeing, dairy is GONE! After all, I cannot tolerate milk, and I wish my mother wouldn’t have forced me to drink it until I was nine. It was a villain in my life, and I will not make it one in hers!
PS A Day Later: I am really enjoying the calm Carrie today! She can sleep!!! And isn’t thrashing around screaming anymore! Hugs back at you! Libby
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FINAL NOTE: For many years, I have tried to share this story with other parents. Most assume avoiding dairy won’t work. They say it is too easy, and often say their docs have said diet didn’t matter. Yet I have heard from several people that is has been life changing… So, if there is one soap box I will stand on, it is this: If you have any question, please try at least one week with no dairy at all… we wish you the very best!
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