Saturday, March 14, 2009


My daughter Blue is autistic. I have so many feelings about this and sometimes they are rushing through my head so fast I can barely even catch a glimpse of them. She is very high functioning. Very. The fact is, she is so high functioning that most people don't know she is autistic. And certainly that is what I want for her. I don't want her to be judged by her neurological tendency, I want her to be judged on her amazing creativity and wit, her love of numbers, words and people. Her ability to tackle a challenge without her self confidence weighing in at every turn. She is like her father, and he is a man I fell in love with, and grow to love more each day. I would not change her. But - life is hard. And I feel like there is nowhere I can be really honest about this. Her teachers and therapists understand our challenges, and her father, certainly, and even her little sister is now beginning to understand what having Blue for a sister means. But to the big outside world, it is less apparent. I don't wish she were lower functioning, I just sometimes wish that she didn't look so darn normal. I wish someone, sometime would look at us while I am talking my very controlled hypnotic and repetitious patter that comes out of my mouth almost every waking moment and say "Hey, I understand. Me, too. See my kid? Even though he is walking quietly beside me right now and not grabbing every motherloving thing he sees off the shelf or screaming "You are never a good Mama!" or scratching me, he is like your kid, and we walk the fine like between control and upheaval, every day, all day. Just like you. You are not alone."

Some days, I feel such huge sorrow in my heart. I am undecided about whether it is feeling sorry for myself, or grief over the way I thought things were going to be but aren't. There is no doubt that Blue challenges me at every turn. She has pushed me as I require her teachers, therapists and parents to push her. Pushing to become more, better, stronger than I ever thought. Both of us. I stopped cutting fabric to come and write this because it felt like it was going to explode out of my head. There I am, in this tiny room barely big enough for one desk, let alone two, cutting out fabric for pants. Positioning pattern pieces as if life depended on making sure the right elephants got to the right spot on each pocket. But really, it is my child that has taught me this. And in a way, life does depend on it. Because she won't wear her pants anymore. Not even the knit stretchy pants. And she will sometimes wear a dress, but it was 17 degrees out this morning, and she won't wear tights. But she loves her oliver and s pajamas. So really? Making these pants is a deciding factor in how we live our life. If I make the pants right, she will wear them happily. If not? Then each day is a battle over putting on clothes. And it makes a Mama tired. I am just tired.

Then I read something like this post by Lucinda about Cooper's Flock. Her sweet little boy, Cooper, died at just 21 days old. I can't even fathom the depth of her pain and sorrow. And I am sure she is more tired than I am. Because I can get sweet hugs and kisses each day from my children, I can enjoy their individuality and sit in amazement over how they are growing and learning. I cannot imagine having that ripped away from me. And somehow it helps to know that what I have, this that makes me so tired and sad sometimes is really the biggest blessing I have ever known. Ever. And nothing better will ever happen to me in my lifetime.

So today I am sewing pants, and when my yarn comes in the mail, I will be knitting birds for Cooper and counting my blessings while I count my stitches.


  1. Hi.

    My name is lisa and I am in southern nh. you did a lovely job of summing it all up... My 15 year old has Asperger's Syndrome. It is still a struggle every day and you are right - it's hard, just hard. It will probably never be easy for him and he is the most incredible person and it breaks my heart. His younger brothers have some issues, but they are more independent a lot of the time. He is such a great brother to them, though. Tomorrow, we are having a Quantitative EEG performed and then will proceed with Neurofeedback. I am trying so hard not to get my hopes up....

    Thank you so much for sharing yourself.


  2. Thanks, Lisa. Sometimes a mental purge is so necessary. I love hearing about older aspie/autie kids because I can't even begin to imagine what life will be like in 10 years. I can't even imagine kindergarten.

    Good luck today with your son. You know my good wishes will be with you.

  3. Hi,
    I'm reading back through your blog and I just have to comment here. I have to confess that I have, actually wished that Roo didn't look so normal, and am sometimes, jealous of the mums of the downs kids who get so much help and attention. Sometimes it's hard to be a good mum, or even in my case, a half-way decent mum!
    I thought of you yesterday as I was trying to get Roo to chew gum (he's addicted to lollies, I thought it was healthier!!) and I told him to breathe in to feel how cold the mintiness feels. He got such a shock, I felt a bit bad. But I thought of you cause I thought you might understand!!
    deb xx