The Disability Primer: What To Do Now That You Have A Diagnosis?

Piping Hot Bag of Sh*t that is a diagnosis.

Not long ago I met a mom whose daughter was diagnosed with the same disorder as our daughter. She sent me a lovely note thanking me and I replied with an abbreviated version of what I have written here. My email to her was the inspiration for this post because there are newly diagnosed children each day and families suddenly grappling with what I call the Piping Hot Bag of Sh*t that is a diagnosis.

My husband thought meeting a newly diagnosed family might hurl me into the abyss that was the first months after we received our daughter’s diagnosis. My thinking, was that it would be an opportunity to bring hope, humour, and reality as I am known to do: with honesty, always, but also with the perspective that looking at the world through a lens of possibility brings.

And it was indeed that…in fact, more. Because when we got the diagnosis I felt lost in a tsunami of fear and sorrow. And now, bearing witness to another’s journey having earned my stripes as a mom of a child with extraordinary needs, my soul sparked with joy that little bit more because I am on the other side of it; I am not clinging to what could/should/would have been. I am present. I have said before that getting through it doesn’t mean you’ve mastered it, rather that Mastery means you have gained resiliency. There are moments when I submit to the sadness for a while but that while is now a day, maybe two. And it will be the same for you.

In Game of Thrones, there were two occasions when Tyrion Lannister was on trial and had to fight for his life. As a little person, Dwarf being the vernacular of the series, he needed someone to take his place — be his Champion to even the odds of living. I speak about putting on an inner armor when we go out to fortify myself. And the truth is, I am a Champion as much as I am her mother, her educator. My job is to create a foundation of self-esteem so strong, so impermeable that on it she can grow, learn, discover, and challenge herself just as her neurotypical sisters do.

 

Who Is Your Child’s Champion?

I am her Champion. You are your child’s. You battle on their behalf — and that doesn’t mean you shield them, it means as it does in Game Of Thrones that you level the odds for living. So how about we spend a bit of time together outlining what that means?

The truth is that your child, like anyone else, will have as full a life as you decide they will have. What does this mean? It means that she can languish in a chair and do little more than watch something on a loop or she can be taught in one or various modalities of communication, have new and different experiences brought to them, and be given the same right to education as everyone. As Champions, our leveling of the field involves finding opportunities for the experience of life and where there seem to be none, do our best to create them. It means slaying our child’s attacker (disorder) and all they bring with them.

It means advocating (mistakenly understood as fighting) for services, equality, funds, and educational and therapeutic support. And one of the very most significant ways that you can be a true Champion for your child is by helping them communicate. I see this as the single biggest way parents or loved ones unknowing create barriers. The challenge here is while we naturally teach our verbal children to speak in whatever language(s) we know, to teach a child who may never be verbal to “speak” requires that we learn a new language ourselves: Augmentative and Assistive Communication.

Yeah, I never said that being a Champion would be easy.

 

Communication Devices

We started with the rudimentary and extremely useful yes/no. For yes, our daughter, Téa, learned to look at us or the object and for no, to look away from us/the object. Then, we moved to PEC (Picture Exchange Communication) to give words (via images) to items. Then and still on-going is the use of an eye gaze communication device called Tobii. I speak of communication first because it is the single most important way to demonstrate to your child that they matter; their voices matter — their ideas, feelings, fears, and wishes have value equal to that of everyone else’s. In an ableist world, where our language is built around the most “able”, it is particularly important to cultivate this. I laugh with our daughter that she can speak more languages than anyone I know: she speaks eyebrow, pec, eye-gaze, vocalizing, English and maybe understands Spanish and French too. My daughter can convey more in a single subtle facial gesture than most can when rambling for minutes on end.

Communication will also allow their world (and yours, frankly) to open up. City programs and non-profits offer recreational and instructional programs. Explore them and discover whether your child is musical and athletic and artistic. Or none of it. Maybe, they are a thinker. An observer who enjoys and gets a rich experience out of observing and taking in the world around them in a variety of settings. The biggest mistake I would caution you against is presuming interest or a lack thereof.

Ask.

 

How You Speak Matters

Shape the notion of value and interest with “I wonder” sentences. For instance, “I wonder whether you are enjoying the music as I am.” This kind of dialogue is possible when you remember (or realize) that your child is a child first and the diagnosis or disorder they contend with secondary. How you interact with them about it will shape how they incorporate it into their life and regard themselves.

She is not your Rett Angle (puke) or pRETTy girl. He is not your Downs baby, or any other assignation. She/he/they is Sawyer, or Téa, or Rachel, or Emma, or Aiden, or Taylor, or Alex, or, or, or. Delicious child of yours, full of potential — and whatever that potential is, is as unknown for them as it is for every single human being. So don’t put limits — imaginary or otherwise — as others wrongly do. Simply look for possibilities and a good place to begin to find out about these programs is online and via social media.

 

Resources

On social media, look for groups that are supportive more than sorrowful. Sometimes, shared sorrow is very supportive; it can feel like camaraderie. It lessens our pain because it shows us that we are not the only ones struggling or suffering or raging at the world. But it can be a poison if you sit in it too long.

Two I like a LOT are both on Facebook: PAL (a parent resource group on Facebook that is an excellent and truly supportive and informative experience) and AAC Through Motivate, Model, Move Out Of The Way (a group by Kate Ahern which will elevate your understanding of communication and learning exponentially).

Practically speaking, you will want to connect to whatever organization in your area supports families. Your child’s doctor, nurse practitioner, or specialist should know. If they don’t, ask a social worker. These organizations are in place to support families (to greater and lesser degrees) and help connect them to other resources and funding.

Things to ask about:

  1. PSW hrs: Personal Support Worker. You may feel you don’t need them now, but get them now anyway because: a) it really does help immensely, b) it takes a while to get the right people in place, c) it is important to set a precedent for need…think of it like a budget — use it or loose it/never get it.
  2. Respite Funding. Your caseworker will need to apply for this for you. Costs can cover babysitting, activities, camp, recreational programs. It is a sum of funds that you are awarded which you invoice the government for, at least where I live. In your area, it may be different. For instance, if I pay $1200 for camp, I send the paid receipt to the govt and they give me back the $1200 up to whatever total amount you are given.
  3. Easter Seals Incontinence Grant is money you get up front for buying diapers for children older than 2 yrs. From time to time they will ask for receipts as part of an audit that proves you are indeed buying diapers.
  4. Government Programs: there are respite and funding programs that different areas have in place. A GOOD social worker will give you all the necessary forms and either fill them in for you or with you. I missed out on a lot of money for services because the forms overwhelmed me. I did not have a GOOD social worker. I do now. Get yours.

How’s that for starters?

If there are things you think would be useful to include or that you want to know about, let me hear from you and we’ll update this primer.

What I hope you take away most of all, cherish close to your heart, is a realization that no one knows what or where limits lie — so don’t stop investing yourself in your child’s self-esteem, sense of self, and experiences to grow.

This is one area in life where the definition of success is in a life not ignored.

From Mom to Drug Dealing Monster Slayer

pop

slide

swallow

hope.

pop

slide

place

hope.

wrestle

slide

toss

swallow

hope.

 

Tiny Red Boots in a tube.

My nightly routine of taking a low dose of anti-anxiety/depression medication always ends with hope. Hope that these little pills which feel a little magic will soothe my mind and fortify my spirit.

A few years ago I started wearing fire-engine red hunter wellies. They made me feel like I could handle things. They did the walking for me when I felt that I couldn’t take. another. step. (this site is named after those red boots and what they have meant to me)

 

Friendly neighborhood drug taking, drug dealing, soon drug smuggling (legally) mom.

The multiple times a day routine of pushing drugs on my daughter. Heavy-duty anti-seizure meds that do as much harm as good.

Valproic Acid. Keppra. Clobazam. Ativan.

Sprinkle in some Cannabis CBD oil for good measure and some stool softener.

Drugs, 3 times per day for my daughter, check!

Food, daily g-tube feedings 5-8 times a day, regular feedings 3 times, Check!

Fingers crossed, hopeful that we’ll be one of those families in a video https://sgs.nsw.edu.au/cialis-online/ that goes viral talking about how our daughter’s monster was slain and she can walk again, talk for the first time, and regained some of the use of her hands.

See? Hope — it’s nearly a religion at our house these days.

Meds for my daughter are a necessity. They help reduce seizures. For me, Meds help me stay out of the cracks my brain falls into when I forget to take them.

I didn’t need them BR (Before Rett Syndrome).

Will they become like oxygen, something I can’t live without? Hope my doctor gets that referral in soon; all my follow-up and muscle-in is reserved for my daughter’s needs; I need to make sure I don’t run out of follow-up or muscle-in for her.

Drugs are at once my aid and my crutch, with them I am armed against the monster named Rett.

And I wonder: will the day come when I have shaped my brain and my nervous system in all the ways that are needed to stop seeing monsters.

 

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.