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Leda Natkin Nelis

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Sister Act

Posted: 05/08/2012 5:52 pm

What happens to the siblings of special needs children? My thirteen-year-old daughter has been looking on with envy as I spend my odd hours crafting and polishing parenting columns focused on her brother -- his quirks, his talents, his challenges. This week, let me shift my attention to her, the neurotypical sibling.

My daughter has grown up in doctors' waiting rooms. When my son was much younger (pre-diagnosis), morning school was often followed by three different therapy appointments one after the other. I would zigzag across rainy London by tube and bus, the children strapped into my 120 kilo child-UNfriendly Silver Cross double buggy. Any cries of protestation were swiftly thwarted by my desperate attempts at musical merriment to the tune of "The Wheels on the Bus." Highly processed Peperami sausage sticks ("150 percent meat"? How is that possible? ) also played a pivotal role in assuring a smoother journey. I had already discovered that there is a direct correlation between a high concentration of E numbers and cheerful children.

Interestingly enough, both my daughter and I have fond memories of the time spent in waiting rooms. During these sixty-minute therapy time slots, she and I could enjoy special time together, while my son was off fine-tuning his vestibular system and capacity for bilateral integration . This was mother-daughter face time. We would read Beatrix Potter books and build Barbie castles, munch on Ginger Nut biscuits and play with her Polly Pocket dolls and their seemingly ingestible, miniscule, plastic fashion accessories. Normally, my daughter played third wheel to a highly intense older brother. Now, for a whole hour, I was hers and hers alone.

Every therapist's office had its unique selling point. Emma the speech therapist's office had almond hand cream in the bathroom and a massive stuffed elephant. At Tessa's (my son's Freudian psychoanalyst -- the ultimate fashion accessory for any high-flying special needs child) there were five pence cups of juice for sale. My son's occupational therapist would sometimes even let my daughter swing on her therapeutic ropes and mesh swings designed for children who, like my son, have sensory issues.

Once my son was in full-time school, my daughter and I were finally able on a regular basis to enjoy all the toddle playgroups that I could never attend with my son because of his frequent outbursts and defiant behavior. Activities like Belsize Bunnies and story time at the local library, the bane of most mothers' existence, became for me an affirmation of normalcy, a joint celebration for me and for my daughter of the kind of family dynamic we both had craved. We reveled together in these sessions. I am probably the only mother in the history of Gymboree to cry tears of joy as I raised the eponymous nylon parachute up above a circle of snot-nosed, howling toddlers and yawning nannies. For once, I felt like other mothers feel.

Fast-forward ten years. We still have our rough patches, but our family is now far more functional. My teenage daughter, however, has been in the trenches. Her experiences have left a mark (as opposed to a scar). She is more insightful, I am guessing, than many of her classmates, more empathetic and understanding about peers who are different. This is not to say that she is not bitter. I am in many ways stricter than other parents. Sticking to a routine is what keeps my son's anxiety in check. Bedtime is strictly adhered to, on weekends as well as on school nights. I very rarely deviate from my iron-clad routine, except in the case of the occasional disco or birthday sleepover; even then I bend my rules only with a great deal of eye-rolling and grumbling. This bothers her. She sees her friends enjoy far more freedom. My daughter often reminds me that she is now a teenager, and therefore is not tired at 10 p.m. or 10:30. Nevertheless, I know that the reason our son is thriving is due, in part, to a carefully maintained schedule. When it comes to bedtime, I am a drill seargent.

It is important for the neurotypical siblings of special needs children to find a healthy mode of escape. For my daughter, this escape is ballet. She takes dance class four times a week and dances with a National Youth Ballet troupe each summer. When my daughter dances, everything else disappears -- the histrionics, the intense banter, and my sometimes-overbearing psychobabble (I speak of "kinesthetic memory" the way most Brits speak of the weather). She can lose herself in the serenity and studied precision of fouettes and grands jetes.

Another sibling-related challenge my daughter has encountered has been dealing with her brother's resentment at her academic achievements. She attends a highly selective girls' day school in West London -- a school considered by many to be the top secondary school in Britain. This has come at a price. Despite my son's own obvious intellectual gifts, he resents his sister. It is hard for him to understand why, if he can regularly correct curators at museums and point out inaccuracies in textbooks, he cannot, like his sister, attend a prestigious mainstream school. I must patiently explain to him that he is brilliant, but that his dyspraxia and social challenges require him, for the time being, to remain in a specialist setting. "Why rush into mainstream?" I find myself constantly asking my son. "You have your whole life ahead of you for that." These are the years where careful professional input can make a massive difference. Why pass that opportunity up?

I remember being pregnant with my daughter. My son was at his most difficult then, a highly agitated child with a severe sleep disorder, feeding issues, and impaired language and play. God only knows how I found the strength to give motherhood a second shot at that time. But my beautiful daughter gave me a second lease on life during those trying years. And now that my son continues to astonish everyone with his academic success and increasingly admirable social skills, I feel incredibly proud of them both. My husband (a film buff) wanted me to call this column Collateral Damage. Funny, but too negative. Perhaps a better title would be Sister Act.

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