Making my top 5 of the hardest things to deal with remains dealing with the folks who work for health service agencies. Being patient, and “sliding” in rather than charging in are two skills I am not naturally blessed with. It’ll be a lifetime in the making before I manage either of these two abilities with any form of grace.
And yet, grace with the right amount of push is what you need to hone as a parent in the world of special needs services. It also happens to be what you need to hone as a human being looking to accomplish anything at all.
If we were talking about businesses, when there are options in the area for where our children can receive private services out of pocket then we could rage and shout and take our money elsewhere; it is after-all the market economy. However, in the public service sector which is supposed to deliver services to citizens who need it but is designed to fail and where, as it happens, most families find themselves, you need to be practically pathetically apologetic and overly thankful for each and every action.
I find that so tiring, so disheartening, and extremely annoying.
The well-raised, sympathetic, people-loving, people-pleasing part of me understands that more often than not, the women and men who work as service coordinators, intake workers, counselors, case managers, and personal support workers have a genuine connection to the work they do and want only to improve the quality of life of the people who figure on their caseloads.
The mother in me, the one who discovered you can get over the fear of coming across as too aggressive and experiences Hulkian rage at the severity of dysfunction in the health system as it relates to children with special needs, will tell you that those of us who navigate the system for our children should be paid for all the coordinating, following up, consulting, tracking, pushing, and repeating, repeating, repeating that we will do well above and the beyond the “expected” parenting related work that is raising children.
So how, in the midst of the shit-storm that is a diagnosis and life with a child for whom you need to continuously arrange services, am I supposed to be able to speak sweetly when all I want to do is rip someone a new one for being another cog in the wheel rather than an ally our family can count on?
The answer is this: to the degree that you are able to remove the feelings you have about your child and life in general right now, do it. Speak as if you’re addressing a neutral object. Sound crazy? It is. Near impossibly hard. But you’re a warrior….at the very least one in training, and you can handle this just like you are handling everything else.
What I wish social services employees understood is that it is very difficult for us parents to talk to them. We are at once at their mercy — needing their willingness to connect us and grant us the magic of services or shorter wait times; and equally needing to demonstrate that it is us who are the advocates, leads, and implementors of our children’s well-being.
It is me who knows my daughter better than anyone else. I see the nuances and I see the struggle. I see the hint of understanding in her eyes when she holds my gaze that moment longer and not even if set on fire would I look away.
But here I am, at the mercy of the policy maker, the service gate-keeper who decides whether or not we will be granted a visit and when that visit will be; decisions made on the supposed knowledge of my daughters potential..likelihood to advance so that the numbers align with secret statistical thresholds that are never said aloud. Waiting and hoping that they will decide that an assessment of the severity of my daughter’s condition makes more sense than telling me that she can’t be placed on a wait list.
Special Needs funding needs to be independent of government.
The ridiculousness of the situation we are in right now is that children with needs not labelled Autism don’t have a scoring system as a determinant for what the most impactful therapies are and there is no mechanism designed to ensure that available funds go to the children who need it.
Is it possible for all children to get everything they need? No, that’s utopia. And not because the money isn’t there, but because of how the system is set up; how governments taking turns playing house think the votes will swing.
Funding allocation for the special needs community inclusive of the needs of children, youth and adults needs to be wrestled out of the hands of any government and stand alone as an aspect of our Charter of Rights and Freedoms. A party-free committee comprised of equal representation of vetted and well-reputed professionals and parents not vying for funds for their child’s diagnosis as if we are on separate teams, but as invested individuals in the well-being of our society’s bravest — and equally — most vulnerable. A true, real-life Justice League.
The hoop-jumping parents are required to do when we do so very much already; and experience more stress, strain, and struggle than most people will bear over a lifetime invariably end with “I know of a really good [fill in the blank], but it’s private. Whether a child has Autism, Cerebral Palsy, Rett Syndrome, SMA, Downs Syndrome, or any other form of unfortunate disorder needs to not matter at all. It is quantifiable and empirically shown that education, Physical and Occupational Therapy, Speech Therapy are life-altering, life-enhancing, opportunity-giving therapies that lessen the strain on all infrastructures in communities. All of them, without exclusion, benefit from children and young adults receiving early intervention and support via therapeutic approaches. It will cost less to spend more now.
But what government wants to be the one to spend it? Folks who think they are not touched by special needs don’t want money spent on it. They want lower taxes (until a family member suddenly has a stroke and needs nursing….which isn’t available because the money was never allocated). They want more spend on infrastructure, or stupidly, cheaper beer [sigh]. The list of competing budgets is long and there are items on it that are truly meritorious. Which is why special needs funding needs to be independent of government.
Services need to be provided for with as much reverence as we give to life; for without them, there isn’t much of one for the majority of children, youth, and adults with special needs. Special Needs has to stop sounding like a dirty word and be understood as what it is: a unique need that must be met. The term isn’t Special Wants or Special Wishes. They are needs and they are as significant as the medical needs we work hard as a society to meet for those who have them.
Families can’t crawl out from under the burden of properly supporting their special needs children, in fact, many can’t even achieve “properly” and have to suffocate in the feelings brought on by “not nearly enough”. For a long time, I believed that it is my task and my task alone to care for my daughter; our job to pay for everything. Somehow, I started looking at anything the government did to cover a cost or therapy as a BIG GIFT from above.
But that’s nonsense.
It’s all nonsense.
If society and/or health insurance pays for the medical care of a sick child, it must cover the therapeutic care of a child with a life-altering condition.
If you’ve made it to this line, I want to thank you for reading with your eyes and listening with your heart as I wrote from mine.