Lauren’s story has not been an easy one – on Lauren – or her family. Her mum Joanne told us more…
Lauren is a twin – the youngest of five children. From Lauren’s diagnosis, at four months, our family threw ourselves into supporting and advocating for her. Our hurdles included the “system”, whether daycare, preschool, or school itself not willing to change/modify/adapt policies around food security to the same systems being rigid and uncompromising when it came to Lauren’s behaviours. By grade five, Lauren had been suspended so many times, unfortunately, we really didn’t feel it was worth sending her to school any more. So home-schooling (at our expense) began.
Needing support from other parents throughout the province of British Columbia, I became involved with the British Columbia Prader-Willi Association- becoming the president for five years. I enjoyed it; however, between Lauren’s care, my other children, my full time job (high school teacher), coaching and the organization, it just became too much.
As Lauren entered her teens, her challenging behaviours increased. She got in trouble on-line (inviting strangers to our home – “best friends” she called them – although she didn’t know their name- mostly older men); jumping out of her window in the middle of the night – running away to buy food at McDonald’s; escaping her caregiver – found eating in a dumpster and contracting e-coli 0157; having a stranger show up at our house – with a grown lab – wanting $500 for the dog Lauren bought on-line… the stories are endless & WAY too many to record here!
In 2016, we went through 23 caregivers – some not even lasting a shift (after two weeks of one-to-one training). We realized I would have to give up my work to care for Lauren full time. So, we sold our condo and moved to another province where we could afford a home.
Over the past four years my husband looks after Lauren while I substitute teach and I look after Lauren when he goes back to British Columbia (June to October) for work. We don’t get to see our other (now adult) children, who still live in BC, and my husband and I don’t get any “us” time, but Lauren’s care, although exhausting, is now stable.
In March of 2020, Covid hit hard. Worrying that provinces may close their borders, Gord (my husband) left early for BC, leaving me in lockdown with Lauren. Knowing I couldn’t spend our days playing board games – without losing my mind- I decided Lauren and I would have to focus on some “self-care” to survive this unpredictable time.
At the time, Lauren weighed 178 lbs and I was 168. We decided to join Ideal Protein – for a number of reasons. 1) I liked the diet – no sugar, low fat, high in low sugar vegetables, and high in protein. 2) Breakfast and lunch were prepackaged – so no arguments from Lauren re: size of serving. 3) With 4+ cups of vegetables & 8 oz of protein a day – our plates looked (and were) loaded – a visual plus for Lauren 4) We were both eating the same thing 5) Easy to follow and Lauren could choose – each meal- what she wanted that day (helped her take charge of her eating). I am happy to report – after 6 months – Lauren now weighs 130lbs (and has been holding steady for the last 6 months) and I am 125lbs. 😊
Secondly, I felt Lauren needed a purpose. We had tried, in the past, various part-time jobs – with NO success. The issues around employment varied – either Lauren would only follow the direction of one specific person, or she would get into other staffs’ things, or she would be rude/aggressive with others, or she would steal food, or she would work for next to no income… Since Lauren enjoyed crafts, we tried making cards and sending them out – during Covid lockdown- as a pick-me-up for family & friends (Lauren picks the design – I cut the paper- and she puts them together – and colours them if needed).
People enjoyed them so much, they started asking Lauren to make cards to give to others – and Lauren’s business was born. So, as we approach our second year of lockdowns, Lauren and I are still making cards – it helps us get through the lonely days and gives us a focus. This year, Lauren will be donating 0.10 cents of every card sold to the Foundation of Prader-Willi Research Canada (since she keeps her prices low & only makes 0.25 to 0.40 cents a card, I think that is quite wonderful!).
I must admit, some days her obsessiveness, care needs, and food challenges become overwhelming for me, but when I look at how far she has come, I tear up and feel incredibly proud of her!
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