I created this blog for two reasons only, not that I thought anyone would want to read about my life. First, it would be a great spot for people to be updated on Claire's progress. I initially thought Facebook would be a good forum for updating progress but I found that it isn't. Second, I hope that one day it would be a great resource for other families who have an autistic or spectrum kid with celiac disease.
Did you know 60% of autistic kids including spectrum kids have some sort of GI issues??
"How many more minutes" will be the title of my blog. Why, you might ask? Well, my life revolves around the question of how long everything will take. "How many minutes until I wake up?", "how many minutes until school?", "how many minutes until we eat?". My daughter, Claire, 7 is diagnosed with Pervasive Developmental Disorder-Not otherwise specified and also with Celiac Disease. She also has the diagnoses of macrocephaly (large head), chronic epistaxis (nosebleeds), idopathic toe walking, she has huge reversed mole on her leg, and severe language disorder including stuttering. For there to be less chaos in Claire's head, everything has to be related to time. Though I don't think she has any real clue what time means. Our home is a haven for calendars. Claire is a fully functioning child, goes to regular school and gets good grades.
I am also a mother to 3 year old, Lily. She is the opposite of Claire is almost every aspect. I say, that when Lily was born and growing, I became a first time mom. This is not to disregard all the hard work with Claire, it was just that raising Claire was sooooooo different than raising Lily. Lily did all the textbook stuff, hit all her milestones accordingly. Lily keeps me on my toes, speaks in full sentences, extremely independent, and loves to be the baby of the family. I also say that when Lily was born, Claire came alive. Even to this day, that statement puts a knot in my throat. I don't think Claire would be as functioning as she is today, if it wasn't for her sister. There is a picture of Claire and Lily in their bedroom that I love to stare at. Lily is only weeks old and Claire around 4. They are laying on the bed, and the bridge of Claire's nose is cradled onto Lily's tiny forehead. And she is just breathing in the newness of her sister. Like her senses finally came alive.