On the day that you were born the angels got together…

carpentersWhen Bryan was a baby I used to sing 2 songs to him, Close to You and Raindrops Keep Falling on My Head. Why these 2 songs? Close to You because it was appropriate at the time and it was sweet and gentle and Raindrops because I knew the words and when you are feeding a baby at 5 am, you need words! If the music in your iPod or iPhone says a lot about who you are I am clearly headed for a diagnosis of schizophrenia. Can the Beatles, the Dead, and the Carpenters coexist with Lady Gaga and Pink? beastieDoes the music you listen to define who you are? For the most part I hope so since most of the music I listen to is the Dead, old school like the Who or Neil Young. I need the warmth of Harvest Moon after a long day but in the morning I crank up the Beastie Boys Ch-Check it Out and drown out the voices in my head. Jason was just asking me last night to sing a song to him before going to bed. Now that is one brave kid. I have some skills, but singing is not one of them. I sang Close to You. That kid totally digs me, he let me sing the whole thing without telling me how bad my voice was. Bryan was just giggling. A few nights each week the boys like to sleep together and last night was one of those nights. I jumped in with them for a bit, all of us in PJs snuggling. I love when they each say, “Mommy, snuggle me!” So I go back and forth, snuggling and kissing and mushing in between them and just enjoying all of the closeness. I read a silly book to them, before the singing, about Spongebob and Zombies-way too young for either of them, but it was a request and sometimes I want to just be the fun mom, not the buzzkill teaching mom so I read it. We laughed a little because it was really silly. Jason always wants me to stay longer and Bryan always wants me to go. When Bryan is ready to go to sleep he is done and dismisses you, but Jason can always go for a few extra minutes of Mommy time. All good as far as I’m concerned. I closed the door and went to my room to sit on the bed for a few minutes to just drink in the last few minutes and reflect on what a little gem those ten minutes were.
I’ve been sort of preoccupied lately with work and planning for the summer and sometimes I need to work on living in the moment more. I think this is an issue for a lot of busy people but for dealing with Bryan one of the biggest struggles is doing for him vs. doing with him. I wonder when he thinks back on his childhood will he think of me as a good mom. He will have lots of people telling him your mom loved/loves you and did so much for you and was a good advocate. But if you are the kid, will you really care about your parent’s advocacy skills? Not so much I’m guessing. So that is why I must always work on slowing it down to be with him. This weekend Earl is taking Jason to NY for another friend’s party. Bryan and I have lots of plans. Surfers for Autism on Saturday. This is the 6th year we are doing this so you can very well imagine the difference between a little 7 year old boy and hulky 13 year old. On Sunday morning we will go to the Psoriasis Walk. I have Psoriasis and so do many of my family members and all of my cousins will be there. And while the point of it is to raise money and awareness, it will be a total love fest for us and when I am with my cousins and extended family, we always say we put the “fun” in dysfunctional. So from Friday night at 6pm until Sunday evening when Earl and the little J monster get home, it’s all Bryan time. I am going to focus on him, play Wii, go with him to ride his bike, bicyclewatch his movies and do what he wants. I will buy him bubble gum and let him take baths in my bathtub.
I am speaking tomorrow at Bryan’s school; not too sure of the audience but I believe they will be folks in the community who are interested in learning what it is like to raise a child with autism. Buckle up people, it’s a bumpy ride! Earl and I are living proof that raising a special needs child can be tough but joyful and when Temple Grandin says “different but not less” that is really the truth.


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