Parents looking for respite care in rural Nova Scotia you will encounter several obstacles. I know because I am a single parent of two children on the autism spectrum.
Respite care provides short term relief by a professional for primary caregivers who are looking after a child or another loved one and who need a break.
The first problem is that to qualify for respite is easier said than done. To get any kind of program or government funding, we need to have this label of high or low-functioning. And forget about support if your child is deemed to be high-functioning.
To the world it is clear that my son is autistic, he is stimming, echolalia scripting, spinning in circles or breaking eggs in the supermarket. My son appears to have no care or concern, but he has many uncovered feelings including empathy that he expresses in a different way.
But my daughter who is also autistic appears closer to their typical peers.
Both of my kids are equal flight risks and in need of emotional support, counselling, coping skills, and especially social skills, preferably before middle school where kids are scrutinized more harshly by their peers.
My daughter, who is deemed high-functioning, was bullied at school from grade 2 to 6, her stimming arm flap was not overseen by her peers.
The reality is if you do not qualify for respite because you are “high-functioning” then what does a single mother with two on the spectrum do? How do parents receive “respite” for their kids if they can only receive funding for one? Surely an outing with one child versus two is not considered a real break?
The second problem is that respite help is very hard to find, even if you do qualify.
After our first home visit (and a subsequent year-long wait) I was given two names as options to choose for respite workers. Neither one had availability, and one told me, “I try not to book on the weekends.” I thought the whole point of respite was to be available when parents needed you?
I learned that some workers see respite as taking your child out of your home, but in terms of the support I need I prefer to take my children out myself and have someone stay with them where they are most familiar so I can leave home.
Oh, and there’s a third problem. Respite costs money, and programs to help out are hard to find.
Even when you are educated you are underpaid and if you are underpaid, how are you to pay for care conducive to your children’s best interests?
The respite shortage I mentioned earlier fits nicely with the other shortages I see in my Truro community, shortages of full-time work, doctors, health care, counselling, support in the schools, lawyers, and volunteers to keep community-based organizations running.
As a parent who faces their own neurological differences and autism, I believe it all boils down to the fact that respite provisions are inadequate.
But the need is there.
Sleep, what is that? Both children are usually well-behaved. I am not trying to portray a nightmare story here, however, it is extremely overwhelming to be a good parent with the array of other things to contend with, especially during the last 14 months.
Sensory processing disorders (SPD), toileting issues that might require a bath three times a day (for comfort and sensory reasons), aversions to food and clothes, it can be quite like the terrible twos well past the age, wearing pull-ups and needing 24-7 stimulation in sensory seeking behaviours.
For myself, due to lockdown and borders closing, my children have been home with me for most of the last year. I love having them home, but the daily stresses are being amplified by the pandemic.
Sometimes this is almost funny and entertaining, other times, I am simply just run off my feet. It was the job I chose when I decided to be a mom, but I did not plan to be a single parent without family members willing to help in my vicinity.
I have spent many a day during the pandemic not showering, not eating a full meal, not practicing any type of self-care because I do not have the luxury of time to do so. My son is a flight risk and needs to be watched like a hawk, 20 trips up and down the stairs, relentless standing all day, forgetting I have legs, it’s all in a day’s work.
Meanwhile I have to provide several meals, snacks and drinks a day, try to keep the house clean, homeschool, shop for essentials while including the kids in these outings as much as possible, go to the park or organize my yard as a place to stay.
In sensory seeking, my son can be drawn to playing with food or destroying a book or tearing something else apart, not all the time and without malicious intent, but for the sake of a sensory experience.
I’m filling the pool, painting, making playdough, anything that fills their world with entertainment, but I am met with the broken eggs, baby-powdered pancakes, meltdowns, expectations of mom to be all and do all, even staying up all night because there would be no other me time.
All the while I am also trying to finish a two-year diploma online, and keep COVID-19 exposure limited to protect their safety during the lockdown. Following the rules of ‘one person in the family shopping’ is near impossible because my son does not care for what the rules are; when mom gets out of the car, he’s not staying behind!
If respite were a feasible tangible service here, I would have that worker as a part of my household bubble, because the need is there. This supposed support needs a 100% overhaul for future struggling parents like me.
See also: Lockdown means more pressures for families who access respite services
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Politics is personal and for any person to express that they avoid politics is to say they avoid other human beings and life itself. Many organizations whose mission statement is advocacy work (to what extent and limits I question) for minority populations including families with Autistic children such organizations often are restrained in this important work due to reliance on government funding. I suspect directors are afraid to call the government of the day on its indifference towards resource inequalities for fear of being shut down. Having been a board member of several non profit agencies fund raising just does not cut it despite the intent of such organiztions to generate revenue from such activites. Unless an organization is being funded by a private citizen (philanthropy) ain’t no makin it in eradicating systemic indifferences. Being racialized minority I continue to be discriminated against on many levels despite the continued civil rights struggles that began with enslaved African’s jumping to their death aboard prison ships rather than be enslaved to any other human. Bless the one whose right it is to speak truth to power and self advocate against all social and legal systen injustices.
Beautifully written.
We need genuine do-gooders for the people.
What’s missing are not enough passionate hearts; in order to raise awareness, first, one must care, then devote a good part of their light & life to making a significant change for the lowest on the ladder who have the least power and the most suffering in society, which the owner and operator of NS Advocate and Instructor Daniel Criss NSCC (who could make the greatest change in our Nova Scotian community if running for office), are two of too few exemplars in demonstrating this. The work is so heartbreaking because it’s so insignificant to the majority who are willing to settle for the minimum resources and without civic awareness or engagement. At best our MLA’s are motivated by their personal gains versus what could develop the community.
Let the collective consciousness be at least attempting to fixing what’s broken. It’s a long road, and ironically why I don’t like “maps.”
Maps- P for project and only a representation which enables the government to make no change. It’s taken longer than we thought ‘getting there map’… which realistically means you follow that same road infinitely and never arrive at your destination.