A Real-Life Justice League for Special Needs

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 https://www.ncahcsp.org/buy-ambien-online/ 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.

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.

 

Fair Is Fiction, And Not The Best-Seller Kind.

Either your reaction to the header image was a gentle “hmm”, letting go is good, right. Or it was an eye roll; learn to find the joy my ass.

Months ago I bought one of these boards that came with sets of letters though not nearly enough for any of the things I wanted to write on it. So when I saw this one on social media, my first thought was “hey, and look at all those letters!” my eyes glazing over at the alphabetic abundance.

The message about letting go spoke to me, and curiously, it sounded like two voices speaking at once (I’ll get to that in a bit). It’s not the first time that letting go was something I needed to do. If you’ve been reading my posts you know I have three daughters, the youngest of whom has a neurological disorder called Rett Syndrome that as she grows robs her of the ability to do the things that she would typically be able to do. Kind of like growing old in reverse: the things she had and could do she no longer can on her own, and many things she never got to do at all.

So I know a thing or two about letting go. Everywhere I look, in life or online, I see images of kids my daughter’s age doing things she may never do. Outings with friends who have similarly aged kids is also a bit of a kick in the gut — softened only by the love and friendship we share. It’s the one time that my mind seems to look at our life as though through a mirror of what could have/should have been had she not been dealt this shitty hand called Rett.

Back to the board. My letter scarcity gave me the task of distilling my idea to its essence so that I could get across what I wanted to say even though I didn’t have the letters I needed to spell it out as I’d planned. Sitting and thinking about how to get across my idea when I didn’t have the tools brought three pretty important thoughts to mind:

  1. Téa, my non-verbal daughter has to work with whatever images there are on her communication device (that some else thinks to put there) to get across whatever she wants to express.
  2. I tend to be wordy.
  3. I thought there would be enough letters – expected enough letters — and the fact that there weren’t left me feeling slightly annoyed and frustrated. Put simply, it wasn’t fair.

Is that unfair?

The picture of what I thought the experience would be like didn’t match the experience I got. Is that unfair? Or is it just what it is? In other words, is “fair” fiction?

A few weeks ago I picked up the book, “The Choice” by Dr. Edith Eva Eger. Intrigued by the title, I wanted to read the memoir, see how she arrived at the idea of choice as a way for working through the trauma (in her case, of the Holocaust). In it, she talks about the idea that whether we succumb, survive, or thrive has more to do with the choice we make about what has happened to us and what it means for us, rather than the actual event does.

Threading that idea into my letter-less letter-board dilemma, I could either let it go and work with what I had, or I could hold the feelings of disappointment and mild anger of not getting what I thought I would get, or lastly, go on Amazon and buy more letters, spend more money and take the time to get what I need so that the picture and the reality could https://sdarcwellness.com/buy-valtrex-online/ match up. Dr. Eger says that while we cannot choose what traumas come our way, we can decide whether we stay victimized by them or move out of victim-hood. For me, this speaks to the assertion that fair is fiction and what we’re really experiencing are emotions resulting from the divesting of an idea for how something would be and what it is.

For most of us, fair implies equity but I think it’s actually the expression of emotion having more to do with our idea of how something was supposed to be, and the feeling of it being different than that. When my daughters were really little they would say “that’s not fair!” to just about everything that didn’t go their way. If it didn’t match their idea of how it was supposed to go, it wasn’t fair. Someone else got to eat ice cream? “Not fair!”, her sister was allowed to go to bed later, “Not fair!”, a classmate was chosen to pick the book of the week…you know it, “Not fair!” Except you and I know that it wasn’t about fairness. We’ve just forgotten that as adults.

Letters short of a full sentence

Back to how the letter-board spoke to me in two voices: “Learn to find the joy in the story you’re living.”

I found bothersome because it suggests failure — learn it, you’re not doing “the finding” right — kind of sentiment. But also, it dismisses the naturally occurring fantasies we have about the world and life in general, but more specifically our lives, that are conjured in infancy and bloom over time. Wants, ideas, and wishes that as we grow up, shift from fantasy into what we internalize as truth — which is why it feels, what? Unfair.

What we observe around us sets the norm for what we expect to be, so when things don’t align with what we understood would be, it feels like we’re letters short of a full sentence.

“Sometimes you have to let go of the picture of what you thought life would be like.”

Yep. I’m with the letter-board on this one. This part requires that we surrender our fantasies-cum-expectations to make space for what is. To do that we need to be able to see them as such (expectation) to begin with. How to do that is the purview of qualified people, I’m just here having a conversation.

“Fair” is fiction.

My version of this letter-board because it, unlike mine, has the necessary letters, is this: “Sometimes you have to let go of the picture of what you thought life would be like and live the story you’re living. It too has joy.”

And in case you’re wondering whether I bought those extra letters. I didn’t. Not because I had a moment of profundity, not as a metaphor for the work and of letting go of the sorrows that are brought by the disorder my daughter struggles with….I just couldn’t decide which letters to get and then started thinking about whether I wanted to risk feeling disappointed again until life got busy and I forgot about my letter-board.

What I didn’t forget about, is the idea I am fully convinced of which is that there is no such thing as fair. “Fair” is fiction. And if we stop saying the words, “it’s not fair” we can make room in our brains to reflect for a moment on what it is that is truly making us feel the disappointment, anger, and pain we experience when the picture of what we thought our life would be like isn’t the same as the story we’re living.

A.

Take The Step

One of the hardest things to do is take that step. Whatever that step might be for you, at some point in our lives, each of us has had to take a step that we were fearful of.

Weary of.

Unsure where it would lead or whether we could face where we ended up, it’s a step that makes us feel vulnerable and changes what is known and familiar into something that might not be. It is a step that will shift us from where we are or who we are.

For me, curiously, knowing exactly where that first step would lead is precisely what often trips me up. It’s as though seeing where I’m heading and what will be needed of me is what I am hesitant of. Maybe it’s like that for you too. So how, when you feel you can’t take that first step, do you actually take it? How, when you feel you can’t face another moment or another task, or another decision do you generate that which you need to just take it?

My daughter has multiple disorders. One of them is neuromotor and another includes multiple seizures daily which make her unsteady on her feet. It means much of the time, our lovely girly was growing an off-center unicorn horn on her head until she lost the ability to walk independently. So, there’s that saving grace…less unicorn, but also less walking.

It also means that despite my wish to not always look like a PSA for special needs, every time we go out I have to pack on my inner armor; and it has taken many steps — most of them invisible and many of them teeny-tiny to get me to a full set of armor. Like the emperor’s new clothes, only I know I’m wearing it.

Each step an invisible internal clunk. clunk. clunk.

Though unlike his, which are spun of light whimsy, I know the heft of my inner armor; how long it takes me to put it on and how tired I am at the end of the day when I take it off. It isn’t guilt or shame around my daughter’s disorder and all the stare-inspiring behaviour it causes that has made me don an armor. It has more to do with noticing that I experience life as an on-going war — sometimes typical daily tasks feel like a battle — and like knights before us who dressed for battle, when my daughter’s seizures rage in her beautiful head and her falls make nausea surge in my stomach, I feel like I am losing ground on the battlefield.

So who or what, really, am I waging war against?

A few things, really. War against imbecilic attitudes, against fellow parents who don’t teach their children empathy, against the fearful and insecure parents whose asshole children grow up without a drop of decency or mindfulness. Against school systems that under the guise of inclusion create an abyss of seclusion, health and social systems that build jobs on the backs of our children yet fail at actually servicing them. Against the absence of funding for therapies and equipment; against a system that will pay for cancer https://startupsouth.org/buy-singulair-online/ care, kidney care, lung care but won’t care for tens of thousands of children to gain the necessary therapeutic interventions that can ease the burden and pain of so very many disorders.

Though if I’m frank — with both you and with myself, a war against my own moments of self-pity and sorrow; a personal crisis’ of self-doubt around whether I am doing enough. Moments that come with the regularity of a menstrual cycle — complete with all its symptoms, except that it’s my eyes which bleed. Remember that though armor can protect you from stabbing and slicing pain, you nevertheless bruise and hurt in battle. Grim? Yes. Moments in life can be. It’s the counterpoint to joy.

While evermore beautiful and meaningful our lives are because of our daughter, so too it is equally harder. My dad used to say that our children grow us up. What he meant by that is that we expand to meet their needs and we know there is a need because our children show us there is one. That stretching is possible because we take the steps.

When you have a child whose everyday life requires indefatigable energy from her, you, and those who work with her; the expansion can be pretty significant. Needs so vast that they require we take some of the hardest steps to take as a parent. Needs that require strides so long that they eclipse our own.

So how does one take those steps?

How do we go from where we stand to where we need to be? By remembering three simple ideas:

  1. Ask others how they took the step. How they faced it, and how they keep putting one foot in front of the other. This first step will do two things: first, it will acknowledge their hard work (and everyone could use that) and sneak open a passage to possibility; it will awaken your ability to speak your questions out loud. Second, you’ll learn a new skill that can help with taking the step and seeing it done by someone else can help you take that step and own it.
  2. The step doesn’t have to be a stride. It can very well be a baby step. It might look like a shower or changing the clothes you’ve been wearing for a week straight (including to bed). Maybe it’s filling in a form, or following up on an application. After all, for those of us who walk, baby steps are how we all start walking anyway. Even the tiniest imperceptible step counts as a step.
  3. Falling on your face counts as a step. You might get up from the fall and think, “well, that sucked.” but it shifted something in you and that counts as a step. Working up the courage to take an action that felt impossible is a step.

In fact, sometimes, the step isn’t physical, it is letting the scariest words form in your head, even when you are nowhere near letting them fall out of your mouth, and those are the hardest, those are the ones that one by one, make you a warrior.