I’ll have some milk with that please…
Welcome 2015! A new year brings new opportunities after a time of reflecting on missed opportunities and an opportunity to build on our achievements of the previous year. In my last blog, I said that I would address how we are dealing with Savannah’s posture especially for when she uses the i-pad. However, in the spirit of a New Year and its reflections and new goals, I think it would be wrong to ignore what the end of 2014 taught me about Savannah. This is also in response to the questions of families who I have met who are trying to get their heads around the use of visuals for their child.
Holidays are always hard for many families with children with special needs. The demands to care and help Savannah transition through holiday seasons is far from the picture that we had in our minds of sunny beaches, late nights and a carefree abandonment for routines. Though over the years, my family have come to understand and respect that Savannah can’t simply flit from one event to the next. Our holidays are planned around maintaining some sense of routine for her; ensuring supports are in place when her routines are disrupted; while also ensuring that the rest of the family enjoy the “abandonment of those routines”. Quite a contradiction within a household, yet it is so often the story of our lives.
During the December break, Savannah’s anxiety levels are usually quite high. And we use various strategies to help her with this. Visuals schedules for routines and social stories for behaviour and information form one part of this, together with frequent and consistent conversations between my husband Michael and I, about plans for getting Savannah through an event. Something as simple as Talisa and I going to Gold Reef City for the day with her friends or Eli going for his first sleepover is a disruption to Savannah’s expectation of what would have been a normal family day. Her concerns can range from: why is Eli not going to sleep in his room; where is he sleeping; why is he sleeping at someone else, and to the hardest one; why can’t she have a sleepover? Many of these questions form part of a repetitive conversation, and when observed closely, it is not that she is just mouthing off words or part phrases; it is that she is trying to make sense of these things.
That said, doing all I know to help Savannah with transitions and providing visuals for her, I had days when I felt depleted and at a loss. Simply because her anxiety levels are so high and the expectations placed on families to celebrate and “get-together” felt probably as overwhelming for me as it did for her. Many years ago providing visuals for Savannah may have felt like an agonising task but now I just do it. It’s as much a part of making sure her wheelchair is as close to her when she has transitioned to her bed or the couch. Recently, when Talisa was making tea and asked Savannah “to get the milk from the fridge”, I was reminded about a time when Savannah could not follow a two part instruction. I remember the heartache and the frustration when I watched therapists instruct her, and she simply could not “get up and go to the door” (this was when she could still walk independently).
As I watched her in the kitchen with Talisa; reverse her wheelchair; open the fridge; take out both the low fat and full cream cartons off milk; place them between her legs; wheel forward towards her sister; and hand them to her, I choked back a lump in my throat. This ability to follow an instruction, plan and co-ordinate her motor movements to transport milk and wheel herself, began years ago when I used schedules almost everywhere in our home. Somewhere along the way, she has gained the understanding and ability to co-ordinate her mind and her body to accomplish what once was “complex” instructions.
Even though managing Savannah’s transitions may always be part of our lives, looking back, I’m glad that we have followed through with using visuals consistently. Looking forward, I’m learning to acknowledge the great strides she continues to make in her very own unique way. I can’t ever say enough about how the repeated and constant use of visuals can make great differences not just to the persons’ quality of life but to the entire dynamic of the household. The proof is in the pudding or in this case, in the teaJ .
P.S Savannah did in fact get to have her sleepover. We had a special Christmas Eve “sleepover” in our lounge, near the Christmas tree, as a family.
As part of continuous learning for Savannah, she has the opportunity to participate in chores using visual schedules such as this one. The aim is to create functional motor planning opportunities, aided language stimulation opportunities, low impact stretch for her muscles and mostly to give her a sense of accomplishment for herself and appreciation from us when she has completed a task.