Before I had kids, I remember seeing families with special needs and thinking that I simply couldn't imagine what that life must be like. I waxed philosophical, pondering issues of quality of life, of what kind of "supports" were really needed, on what role society should play in helping families that were faced with these incredible difficulties. As a social progressive, I have always understood that I have a shared responsibility in helping those who can't always help themselves. I just didn't quite understand what that meant.
Now, of course, I find myself in the shoes of those that I so often reflected upon. As many of my friends will tell you, I always had a bit of a premonition that I would be given a child with exceptionalities. While I didn't know what it meant, I truly believed that my life had been an exercise in preparing for the children that I might one day have. Of course, you can never truly understand a situation until you are living it. Heck, sometimes I'm not sure I entirely understand the situation I am currently in. ;)
I work really hard at keeping things in perspective. I have been blessed in extraordinary ways and my life is a fantastic place to be. I have no regrets and there is nothing I would "change". But I have my moments, like everyone else, of getting lost in the "why me" of it all. Usually, this happens over the dumbest of things. I actually think that I subconsciously choose the dumbest of things simply because when a real crisis hits, there simply is no room (or time) for self-pity. You go into action mode. You have no choice. This is our basic human fight or flight instinct.
But, on days where I just can't get Sammie to engage with me, no matter how hard I try, I find myself whining. And I lose perspective.
It happens to us all.
But life has a way of jarring us back into reality. Sometimes, this is direct ways that impact your life immensely. But more often than not, it happens in indirect ways where you witness- and vicariously live- a trauma that reminds you of just how good you have it.
Yesterday was one of those days.
Yesterday, my world and the world of the only Autism Community was shaken to its very foundation. I wrote a post recounting the story. You can find that post here.
It is a story of a mother who attempted the murder/suicide of her highly aggressive, autistic daughter. It is a story of a tragedy so deep that I am not sure I will ever be the same because of it. It is a story where you sit there and shake your head, thinking to yourself "I could never do what she did. I could never hurt my child. I could never hurt myself. I could never feel that desperate. That could never happen to me...."
Except that that it could.
And that's the terrifying part.
The way I see it, like we are only a few cheques removed from homelessness, most of us in the Special Needs Community are only a few steps away from rock bottom. We have life preservers, we have supports, we have plans. But if these all disappeared from under us, how close would we really be to desperation.
And desperation can cause us to do things that we could never conceive of doing.
Desperation can make you go mad.
I am very likely one of the most well supported special needs parents I know. My kids have absolutely everything going for them, and our future looks exceptionally bright. But what if these pillars of stability were to suddenly disappear. Then what?
We have family and friends in abundance. They are there to lend us a hand, be it by dropping off meals, providing us with childcare, giving us the much needed friendship and companionship that we crave in our long and silent days, understanding, listening and sharing in our struggles and in our successes.
At any given time, day or night, we have at least 15 families that we can call on in an emergency. My "village" is amazing.
Beyond that, we are blessed to be surrounded by some incredibly intelligent and capable friends, many of whom actually work in childcare, education, special needs, early intervention, etc. My immediate circle of friends includes two teachers who specialize in special needs education, a social worker who is studying to be a psychologist, a nurse who specializes in newborns and breastfeeding, several parenting/breastfeeding advocates, a holistic and naturopathic practitioner, other moms who have been navigating special needs parenting and know much more than I do, and the list goes on....And of course, there's my mom who is surrounded by the real "experts" in the field of early child intervention and exposed to the most cutting edge treatments, approaches and therapies. When I have a question, there are half a dozen people I can turn to for advice. I do not have to wait in a queue to talk to a case worker. I have them at my disposal, and they are all eager to help with whatever they can.
I also have a huge network of social media allies. Advocates, friends, parents who are all battling the same fights and living very similar realities. In them, I find kinship, support, and an army that I know is fighting as hard for Sammie as I am for their kids.
This is not everyone's reality.
My husband works a job that allows for a quality of life that is high enough that I do not have an extraordinary pressure to work myself. While I do work when I am not on maternity leave (a "luxury" in and of itself), I am able to do most of this from home and money is very rarely a serious concern. If we need a learning tool for Sammie, we buy it. If he needs a sensory space, we build it.
This is not everyone's reality.
Moreover, Jason's job has been extremely flexible and understanding about family's unique situation. He has been able to attend early intervention sessions, has never missed a doctor's appointment, has been able to come home on particularly bad days when I just didn't feel like I could handle things alone. His boss asks about me regularly and reconfirms that he understands, empathizes and is committed to being as supportive of our family as we can. His career is stable. We are well care for, and need for nothing.
This is not everyone's reality.
I live in Alberta, a province recognized across North America as being one of the leaders in early childhood intervention and special needs integration. Sammie will be attending school 15 hours a week starting on Monday, a service paid for entirely by the Ministry of Education. There, he will work with specialists that would cost hundreds of dollars a week to hire out privately. He will be bussed, at no additional cost or inconvenience to me. Schools have an obligation to accommodate special needs children up to the point of extreme hardship, at which point other systems fall into place to ensure that every child has access to a full and rounded education. We have access to Family Supports for Children with Disabilities that helps carry many of the extraneous costs associated with parenting a special needs child. We have Specialized Services, an innovative multi-disciplinary approach to supplementary therapies and supports for children with severe disabilities. And we have countless different organizations and agencies offering services, programming, counselling, family supports, playgroups, etc. Once Sammie hits full time school, the system continues with its supports until he reaches the age of 18, at which point he is transitioned into adult support systems.
This is not everyone's reality.
I also live in Canada, a country that has made an ongoing commitment to accessible, universal health care (to say it is "free" is a serious misnomer, but that's another post entirely). Our country has also found ways to help alleviate the financial load of special needs parenting. We have tax credits worth thousands of dollars a year, and a Registered Disability Savings Plan, which is supplemented by the Canada Disability Savings Grants and Bonds, up to a lifetime maximum of $70,000. Our medical expenses that are not covered by our provincial health care plan are tax deductible. This includes any learning or development devices that can benefit Sammie's education. When navigated properly, the 'system' provides many- if not most- of the financial support you need to navigate the financial hardship that can accompany special needs parenting.
Are the Government interventions in an easy system to navigate? No. I get "lost" in it on an almost daily basis.
Is it a perfect system? Not even close. There is a tremendous amount of work needed, and so many people who fall through the cracks on a daily basis that it literally makes me sick to think about it. (This is especially true for our adults living with special needs, who are too often forgotten because their parents lose the ability to advocate full time on their behalf.)
Does it cover everything? Ha ha. Not by a long shot.
But it is a lot better than nothing, and it is our to benefit from what is available, and to continue to advocate for improvements every day.
This is not everyone's reality.
The truth of the matter is that, in perspective, we have it really good. But there are many parents who are living realities that are very different from my own. They are without the family and friend network to provide help, solace, and support. They are without the understanding boss and the stable, flexible job. They are without a government that pays for many of the treatments required, and subsidizes almost everything that isn't paid for. They are without a government that is committed to seeing every child succeed to the best of their ability.
Involved Family/Friends.
Stable Finances.
Government Intervention.
They are three pillars of support removed from me.
Or, put in a colder, harsher light, I am three pillars of support away from rock bottom.
Remove even one of these pillars, and my foundation begins to crumble. Remove two, and I am teetering on the brink. Remove all three, and my life falls apart.
Crash.
Bam.
Boom.
Rock bottom.
And then what?
I don't know. It seems to far removed from me that I just can't imagine what that reality must look like.
But truly, we are all only a few steps away from the life that we fear the most.
I don't believe I will ever find the words to truly speak on the horrors of Kelli and Issy's story. I can not tell you if what she did was justified. I can't tell you that she is evil. I can't tell you that she is a victim, or that someone else is to blame. I simply don't have the capacity to fully wrap my head around any of it long enough to form an opinion.
All I know is that it was, without a doubt, an act of sheer and utter desperation. It was the act of a woman so broken down that she genuinely didn't see any other choice. And while I can never imagine myself taking the actions that she did, it definitely makes me reflect on just how lucky I am and how close I could be to living in her shoes.
Desperation. It can make you go mad.
And that is all the perspective I need.
Edited to add a note about Social Media/Online supports. So very true. Thank you, Steve, for pointing them out. :)
ReplyDelete