She was a strong-willed, energetic child who loved her toy puppy, horse and Strawberry Shortcake doll.
We enrolled Melissa in Kindy, sitting down with her teacher explaining to her about Crouzon syndrome and what Melissa had been through. As it turned out I had taught the daughter of the teacher aid - all was good.
Melissa started Kindy. She formed friendships and enjoyed going. The teacher found that the children were asking questions about Melissa's bulgy eyes, so in her wisdom, she implemented a unit on how our faces are different. It worked a treat. Melissa seemed pretty oblivious to the questions being asked and we made no deal of it.
The next year Melissa progressed to Preschool. She loved Preschool - the dress ups, games, blocks, the rag doll that went home with a child each night, her friends and her teacher. Learning was fun. She was an active little girl who found it hard to sit still. The other children accepted her well.
At the end of the year the preschoolers went over to the local primary school where I was teaching, for the introduction of Prep the next year. It was exciting for me to have my little girl in the school with me.
Again she was oblivious to the size of her eyes and we made no deal of it.
Year 1 arrived. Melissa was under the care of my dear friend, who is a Christian. She nurtured and cared for Melissa. It was a beautiful year for Melissa. Melissa was happy and had friends. She performed well academically as well.
Again she was oblivious to the size of her eyes and we made no deal of it.
An example of this that my husband vividly remembers occurred at the hospital after Melissa had been to see the opthamologist. The boy said to Melissa, 'Why do you have big eyes?' Melissa's reply was, 'I just went to the doctor and he put drops in my eyes.' Melissa obviously meant her pupils not her eyeballs. The boy though was happy with that answer and walked away.
But then Year 2 arrived and things changed. Melissa suddenly it seemed grew an awareness that she was different to the other children.
And even though her teacher was supportive and vigilant, Melissa encountered some questions and comments, which she interpreted as bullying, which they weren't. She had no idea of how to respond to these questions.
We then had to talk to her about her face and Crouzon syndrome. We had to teach her some strategies for when children asked her why she had big eyes. Words such as 'I was born this way...or...I have small bones in my face'... Though her actual way of dealing with other children was to run away from them.
I was saddened when this happened. Melissa had been brought up by us like any other regular child. We never mentioned her eyes. To us they weren't an issue - they were part of Melissa. She hit school and the other children broke that innocence. She was not the same from that point on.
Melissa started to change. In the classroom she would misbehave and seek attention. Socially she was pushy and had problems understanding social cues. This behaviour started to escalate. It needed to be addressed.
She also developed a phobia to graffiti. We had been in to the city to see a circus and went to find a toilet. The toilet block was in a ghastly state and terrified Melissa. From then on she could not look at any form of graffiti without becoming anxious. Nothing we said to her would ease her stress.
We talked to the speech therapist at the hospital and she contacted Child and Youth Mental Health. They worked with Melissa, dealing with her self-esteem, how to respond to questions asked by other children, how to socialise and her graffiti phobia.
I am thankful for their help - we got our happy girl back again. Her behaviour improved at school.
Melissa had the same teacher in Year 3. She continued to work with Melissa to help her to cope with school life, providing boundaries and support.
Academically Melissa performed well. Socially she continued to encounter problems but progress was being made.
At home we worked on building Melissa's self-esteem and we kept talking to her about her feelings.
© 2012 by Jenny Woolsey
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