It depends on how a random chromosomal change affects your child’s body and mind. It depends on what kind person they are, and what kind of person you are. It depends on a million things… and none of them.
Now is the time to chart your own course and follow your instincts as a parent. It depends on you – you know your child best. How can you let your child shine? Who will they become?
When I first sat in the geneticist’s office and the doctor announced, “I have a diagnosis for you,” my world stopped.
The doctor listed a litany of traits people with PWS have – short stature, tiny hands and feet, poor muscle tone, a tendency to skin picking and tantrums, ‘autistic tendencies,’ insatiable hunger, low cognitive ability and/or severe learning disabilities.
And all of this is true. Little Miss Adorable is the poster child of ‘short stature’ – at age three, she is the size of a one year old. Her hands and feet are so tiny it’s hard to buy shoes and mitts for her. If she is very stressed or over tired she will pick at loose skin, so we keep her well-rested and well-moisturized. Little Miss Adorable will sometimes ‘zone out’ and perseverate on sensory activities – she loves pouring dried beans from one cup to another. She sorts and organizes her belongings – most of her stuff is packed into baskets or little purses. We joke about ‘hoarding’ baby dolls. She is very particular about what belongs where and gets angry when her brothers ‘mess up her stuff.’
Low muscle tone – check. Little Miss Adorable is three and still cannot walk, but she is starting to stand when propped up on the edge of a sofa. Her speech is affected by poor muscle tone, much of what she says is unclear.
Insatiable hunger – we are starting to see this evolve now. She will ask for seconds or thirds, and if given a chance she will eat until her stomach is dangerously distended. Some people with PWS have died of a ruptured stomach. The more immediate risk is morbid obesity. So all her meals are closely monitored and calorie restricted. We follow a strict meal plan of mostly veggies, moderate protein, reduced carbs and no sweets. We weigh her regularly.
We deal with this by structuring her environment, keeping all food locked up, distracting from food, having strong routines (bath time after dinner) and avoid focusing on food during special occasions. We spend a lot of time outdoors, hiking in conservation areas, and make sure Little Miss Adorable is involved in swimming or dance lessons.
Little Miss Adorable is little, floppy, does some odd things and says things no one understands. But none of this stops her from being herself.
No one told me she would be a frightening mimic – devoted mother to an army of baby dolls, she diapers, bottle feeds and pushes them in a stroller all while bum-shuffling. She ‘reads’ parenting magazines and loves seeing the latest baby gear. She is now ‘working mom’ and spends her days ‘getting ready for work’ – packing a purse with toys, demanding keys and a sippy cup, she bum-shuffles her way to the front door calling out, “Goodbye, I love you, have a nice day!”
She has a fantastic sense of fashion – in a shopping mall she becomes active and alert, and points at the clothes saying ‘Oooh, look at that.’ The only tantrums she has ever had have been over a sparkly tiara and pink glitter sneakers. (We caved in and she is now the proud owner of a lot of glitter.) She likes to pick out her clothes and loves getting new outfits. She reads fashion magazines and watches fashion television. See the Princess Gene for more on this one.
No one told me she would sing and dance. She dances to her own beat and makes up her own songs. Sometimes the tune is vaguely recognisable, sometimes it is her own creation. Her latest song is the word ‘Baby’ repeated over and over, with the word ‘Pop!’ interjected occasionally.
Little Miss Adorable has a wicked sense of humour and a deep belly laugh. She loves potty humour and will dress up in silly costumes. Nothing in the genetic tests prepared me for her unique personality, her devotion to all things fashion and baby-related, and her sparkling personality.
At the age of 3 months Little Miss Adorable flashed the world a social smile, and she has been drawing people in since. Countless strangers would smile and chat with her while she was propped in a baby stroller. People from all walks of life literally stop to visit her – folks who are nearly homeless stop and smile at her, and they talk about their own kids; politicians and ‘higher ups’ stop their busy days to cuddle her. At children’s play centres children who don’t even speak English bring her toys.
I’m not sure how she does it, but she does it.
During a recent phone call to her grandparents Little Miss Adorable chatted for 20 minutes non-stop, then bum-shuffled over to her keyboard where she played them a song, danced and sang a few words all while holding the phone. Then she held the phone up to her baby doll so baby could join the conversation. When I finally wrestled the phone away from her my bemused parents said, “She sure says a lot, I just can’t understand anything she says.”
Again, I’m not sure how she does it, but she does it – just differently.
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