Sunday, January 4, 2015

Respecting Preferences

As a wife and mother I strove to keep a happy home. I wasn’t the best at housekeeping but tried to maintain some sort of organization. I encouraged laughter throughout the day and kept music playing. I did these things and more to keep family members, including myself, content. This wasn’t always easy with a child who could tantrum at the slightest thing. One never knew when Jessica might erupt into a head banging, hand biting, feet kicking and let’s not forget the screaming tantrum. She could enjoy playing with a toy one minute and send it flying in the next. The things that would set her off may be just the things that would have her laughing the next day.

Fortunately, Jessica did share our love for a few things like music, Disney movies and sweet snacks. She did have her favorites which I discovered could turn an ugly mood around. Listening to Anne Murray’s “There’s a Hippo in my Bathtub”; any Raffi album always got her laughing. To our delight she enjoyed the folk music Koosh and I liked to listen to like Roger Whittaker, Chris de Burgh or Stan Rogers. She did seem to prefer the baritones or distinct styles of these artists. So this part was cool. Unfortunately, there were a few songs that would irritate her right in the middle of the song so we would have to skip portions to prevent a meltdown. This even happened when I would sing one of her favorites “This Old Man”. The eighth verse would make her cross so I would go from seven to nine.

So as you can see, Jessica could be pretty persnickety. She was also a child of habit. She could watch or listen to what she liked over and over and over again. As she got older there were those who believed that watching Disney or listening to children’s songs were not age appropriate and tried to ‘wean’ her of them. I pointed out the fact that we as a family still enjoyed watching Disney or listening to children’s songs. After all, I was in early childhood education and learned mostly children’s songs on my guitar. For some reason, this did not seem to have any effect on their beliefs and they would go to great lengths to keep Jessica away from ‘childish’ practices.

I put my advocate’s hat on and met with the Director of the Association responsible for the hiring of these individuals who were not addressing Jessica’s needs. Seriously, I have to advocate so that my Jessica can be allowed to watch and listen to things she enjoyed? Why yes, I did win on this one. I wouldn’t let anyone prevent me from going to a Disney movie, wasn’t Jessica to be given the same consideration? So Jessica was once more, allowed to pick out her own types of music, genre of movies, and even TV shows. She was very clear with her response as to what she enjoyed and we owed it to her to respect her choices whenever health and safety were not compromised. As it turned out, she not only appreciated the tried and true of her childhood but also was known to adore the likes of “Diagnosis Murder” (probably because of Mary Poppins' Burt) and the CNN news. That’s our Jess!


  1. Hi Mrs. Kate I am Melissa and Pete's friend Stacey. I have a high functioning Autistic little girl named a Gabby. Today was a tough day for us she wandered away and got lost from her father. Your daughter Melissa has been a great comfort and encouraged me often. She is an amazing soul with such compassion, warmth and understanding. Having a friend who " gets it"

  2. Has been such a blessing. I read your blog from beginning to end tonight. Your words made me laugh and cry. Our struggle while different was still so similar. The potty training too us 8 months, I had a tv installed in the bathroom, my girl finally got it. She regressed a few months later after a medicine change, but once off that medicine we were back on track. Gabby being verbal is such a blessing, she can share her hurts, fears and thoughts. She us a very complicated puzzle. One that I cherish. Keep up the writing, I think this could be an amazing book.

    1. Hi Stacey,

      Melissa speaks of you often and with great pride and admiration! Your struggles are your own and that cannot be denied. I am glad you recognized the common ground between your story and mine. To give voice to this unique situation, to find the blessings when so many others find it a "cross to bare", to even try to help others understand the full scope of what life is like on the inside is something we all need to do more. Every time we do there will be someone who reads and says "this person gets what I am going through". Hang in there. If you ever need a sounding board, I am here.

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