During our Manitoba provincial pre-election months I spent some time following a non-partisan advocacy group. This group promoted better quality of life for those who live with a disability. (Disability matters vote campaign – https://www.dmvote.ca).
One of the areas of concern brought up during this campaign to our provincial candidates is poor pay for those who are service providers. Undignified wages promote a high turnover rate in the industry.
When I read the content of the campaign and I was stunned by one particular fact. The amount of workers a person with a long term disability have in their lifetime is an average of 770 workers. When I ponder on this number first of all I feel, yes I believe it and Hannah is well on her way to reaching 770 extra people in her life. I also cannot help but feel sad for her. That is 770 people that will become close to her in one way or another that will be gone. Close in atypical ways, ways that she cannot control. Ways that include and control her personal space, body, emotions, wellness, socialization, safety and every part of her day.
In the early years when we would bid “Fare thee well” to the rotating door of ABA tutors it was incomprehensibly difficult. How could we manage without tutor “A” in our lives? Hannah’s workers, with the work of appropriate hiring, ongoing training, relationship building have been top notch. We placed one of our most precious beings in their care knowing she was going to be a jackass to them (Sorrynotsorry – beginning years of ABA/untreated autism were extremely difficult). Trusting that they will learn the behaviour plan and implement it to help Hannah. Feeling the guilt every time I could hear/see/sense Hannah was tantruming or having an autistic meltdown knowing I could not step in. But the worst was giving someone else my biggest burden to handle for the shift. How much harder it is to receive than give. But they all did it and did it so well. To see these young woman leave the position and move forward with their lives, or to have Hannah transferred to another EA, at first, was nothing short of devastation.
But we made it. Again and again we were shown that there are hard working, caring and intelligent staff out there for her when we do the work and do it well.
But are there 770 of them?
We know that she has already been under the control of a person who is unsafe. How do we go on knowing that the more people in her life the more she is susceptible to abuse and neglect?
I do not have an answer but I know that while there has been one unsafe person the rest of Hannah’s tribe have enriched her life beyond our imagination. They have brought her joy, excitement, dignity and encouraged her development in ways I cannot do alone. We all need a village.
Last weekend Hannah was able to attend a weekend getaway with a staff and two friends. They crossed the border into a neighboring state for a weekend of swimming and shopping. Needless to say Hannah’s perseveration on the upcoming event – about a month – was hitting the annoying level (all right it not only hit but exceeded). She was so excited and by the time the departure date had rolled around she was almost blank of emotion. She had tapped herself AND ME with the same phrases and the time had come for her to leave.
I remember years back imagining that someone would pick her up in the car and take her away on an outing that didn’t involve mostly me in the planning. I remember just imagining this made me cry with relief. But that was years back and so much has improved for her that when she left I just felt so happy for her and so grateful for the people in her life. I could spy on her weekend a bit as one of the girls posted pictures on facebook. It looked like Hannah was quite the life of the party and I am surprised I did not see a lamp shade on her head!
Every blog I write I try to have a point. I do not know what the point is here if only that I am learning (again) that life is not black and white. Yes there are dangerous people out there and no I do not have control (wait, what?) During this time of pondering I also recall all these years I was encouraged by a counselor I saw years back to disconnect from Hannah in healthy ways. Dammit. I knew I forgot something. So there goes my plan of never aging and definitely not dying. And while there are unsafe people out there and no I do not have control, I will age and I will eventually perish. I have to trust. That is an extremely difficult concept for a special needs parent to grasp on to.
While part of it is trust another part is doing the work. It was heartening to see that every political candidate was aware of the disability matters vote and locally the representative that won did visit our local program. So now we hold them accountable. We ask the questions, “How would you like 770 people to shower you? What are you going to do to ensure that support professionals get a wage that is comparable to others in a similar field? What is your plan for those who will live with a long term disability – that they have a good quality of life?”
I write this blog Saturday morning alone. Hannah has spent her first sleepover with her older sister. Again, so excited and hitting the annoying level of perseveration. Years back I yearned for respite beyond hours of others teaching or caring for her. But for me true respite is to see her happy, anticipate events, and knowing she is safe. Sounds like – what? – that is what every parents wants for their child.