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.



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.



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.

The Disability Primer: How To Tell If Something Is A Big Deal Or Not

How to tell if something is a big deal or not has most of us second-guessing ourselves, and I’m no exception.

There has been many a time when I made a fairly big stink about something that wasn’t necessarily as big a deal as I felt it was at the time. To be fair, like you, there is a ton that I am accountable and responsible for. A lot of people depend on me making the best decisions possible, and there are times I have stepped in the proverbial pile with both feet…no doubt, I will again. Though my guess is having learned what I am about to share with you will help me do it less often and not up to my knees.

The question of whether something is legitimately a big deal when it comes to advocacy and parenting of a child with complex medical or developmental needs, sensory disorders, or behavioral ones is difficult to answer; but we’re an old hand at “difficult”, right? So let’s get to it.

Big Deal or Not?

There are times when something that isn’t really a big deal feels as though it is. At others, big deals become so common-place that they feel like nothing at all. It’s part of the relativity in this complex and difficult parenting experience… like a fun-house mirror, except it is far scarier than it is entertaining.

So how can we tell whether something is a big deal or not? Are there criteria to help us identify whether something should go in the BIG bag or the LITTLE bag of deals? And, if there is, what is it and does it change for each of us? For families of children with needs that extend beyond what one typically deals with as a parent, these criteria differ and fluctuate; so developing a gut instinct and an internal pause button are pretty important.

Let’s take a look at what it takes to develop that gut instinct and hone it over time. For me, it is distilled into four parts:

  1. defining my criteria for what falls into the BIG bag of deals or the LITTLE one,
  2. learning to press pause,
  3. expressing my concerns, and
  4. applying the business concept of a post-mortem once the issue has been concluded. I say concluded because that can mean resolved or it can mean that round one is over, and it’s time to ready yourself for round two.

I’ll start with Defining Criteria because that’s the foundation for the rest.

Defining Criteria

A solid place to begin is to ask ourselves this: is this my criteria or someone else’s? One of the more difficult things to sift through is ownership of how we feel and why we feel it. It isn’t work for things that are common complaints of others to become our own, if others are worked up it tends to work us up. It is work to realize their concerns don’t have to be ours. By no means does this mean we can’t feel empathy or show sympathy, but it does mean that we can listen and not make it ours. And this brings us to the next question that helps us define our criteria: is this (whatever it is) possibly not a big deal to me and I’m getting wrapped up in it for reasons that are unrelated? Is this something that would be a big deal by most people’s standards, or, if you’ll pardon my expression, something that can pass like a fart in the wind?

It’s usually hard to tell the difference but is possible when you give yourself a moment of pause to consider how you genuinely feel or interpret an occurrence. To generalize, our criteria here is defined by several things in varying degrees of importance to each of us: laws and regulations, values, beliefs, expectation, and damage. How each of us defines these is unique, though there are likely similarities. So rather than prescribing what the precise criteria ought to be, I invite you to consider the following questions as you think about something that is now (or recently was) a big deal to you. As you go through this short list of questions now and over time, you’ll find that you can tell the difference between “their” and “your” concerns and your criteria will emerge.

Q: Is what has occurred against the law, any regulations or any guidelines?

Q: Is what I am observing or what is being reported to me aligned with my values about dignity, respect, and the treatment of individuals (in particular the most vulnerable)?

Q: Is what has happened or is happening aligned with my beliefs about my child and who they are/can become? Does it match my philosophy for raising my child and how they can grow to see themselves?

Q: How greatly does this differ from what my expectation is for how it will be or needs to be? Is there a problem with it differing — does it cause a problem or is it simply different than what I thought it would be?

Q: What damage is this action/inaction/issue causing to my child’s safety, well being, development, education, mental health, ability to socialize and interact?

Pressing Pause

This is the skill of all skills to master. It applies to every single scenario — good or bad; BIG deal or LITTLE deal. Pressing pause gives our brain a chance to catch up to our visceral system. It can be a super brief pause or a couple of days pause but it will always be an excellent skill to hone into a reflex.

Pressing pause buys us the time we need to apply our criteria and gather the information we need to have a clearer picture. It will give us a very important opportunity to check in with our child about what occurred and reach out to any additional support system we need to connect with be it friends, a support group, or professionals.

I admit, I like the fuel that the fire of anger gives me. It feels real, honest even and there is definitely a place for it. Experience has shown me that I do better for my child when I press pause anyway. Doing so won’t diminish the power you have in expressing the concern and it won’t pale your frustration; it will help channel the fierce rage or profound concern you have into actionable steps that shift other’s perception of you from “nut-job parent” to “strong advocate”; that change in perception will move mountains for your kid. Make sure your pause button is connected to your mouth. Once you’ve paused, you’re ready to express the concern.

Expressing The Concern

There are two big parts of expressing the concern that cause most parents added-stress when dealing with an issue. It certainly did for me when I started this aspect of my parenting journey eight years ago. These are: being scared to do it and knowing how to do it. It’s natural to be scared to do it, most of us don’t like confrontation. Many of us like to please others or fear being disliked and, regardless of whether that’s the case for you, you may not be sure how to go about affecting the best outcome.

I’m in marketing and business development. My specialty is conveying things, engaging others in authentic ways that result in desired outcomes. What I’ve learned is that you have to market your child to everyone who works with them and supports them. The likelihood that the people in your child’s life do what they do because they love it is moderate to high, so their intentions are good and their actions well-meaning. Doesn’t mean they are going to get it right even 80% of the time, forget about 100% of the time. Nor should they be expected to.

So how, if you’re not a marketer by nature or by profession and you do dislike confrontation express your concerns so that things change the way they need to? I suggest four steps that I noticed I started doing that work really, really well:

Step 1: Ask questions. Make sure you heard or saw correctly. Find out who was involved and who needs to be involved to resolve the issue.

Step 2: Be direct and polite. Being direct means getting to the point of the issue, not describing your anger about what you saw. If it is a safety issue (that must go in the BIG deal bag every time, by the way), here is an example of how to be direct and polite: I saw [blank] which is dangerous because [blank]. We need to make sure [blank] doesn’t happen again. I have ideas, when can we explore them?

An important part of this is setting a timeline for the issue to be addressed. Is it urgent or can it happen over the next couple of days? Is a multi-step approach satisfactory or does it need to be addressed completely all at once and extremely soon?

Step 3: Model. It is very, very common to have individuals working with your child who never received the necessary training to properly work with them (and yes, this is in and of itself a big deal issue). This means that the supporting behavior or even physical positioning of your child or their devices needs to be modeled and demonstrated. Do it yourself or ask to bring in a specialist that can teach them. This is admittedly harder in many public school districts, but I’ve learned through experience — both mine and my readers — that there will be a person in the mix who is willing, and the key is onboarding that person. A good place to start with that is by asking: Are you the person who can help make this happen, and if you’re not, would you please introduce me to the person who can.

Step 4: Define Success. What outcome will feel acceptable to you? Knowing what is a must-happen and what is a would-like-to-see-happen makes the process of solving the issue smoother because everyone has a sense of where the end goal is and it makes it measurable.

Post-Mortem The Criteria

Sounds dark, I know. But it’s not only a medical examination, it is also a concept applied in business at the end of an event or program or launch. So, now that you have a better sense of what your criteria are or how they are taking shape, we need to examine them: are they still valid in force and application?

Sometimes, we respond to things habitually. We are too busy to check-in with ourselves as to whether something still matters to us or even still applies, and this isn’t something unique to our conversation here…I think this is true about everything in our lives. It has been in mine: friendships, ideas, routines that stopped serving me long ago I kept going because I was too consumed by other things to even consider that they needed to shift. Conducting a post-mortem (an examination to determine causality) gives us a chance to explore whether what felt like a big deal and met the criteria no longer does. When that happens, it’s perfectly alright to toss it out the metaphorical window.

The Takeaway

Invariably, we will all get tripped up from time to time on the question of whether or not something is a big deal. It will depend on how we are feeling or the week we’ve had. Applying criteria, pressing pause, expressing our concern according to the four steps above and checking in with ourselves to see whether or not the criteria still matter or apply will go a long way in helping us a) understand whether something is a big deal or not, and b) articulate the concern that is a big deal with greater success.

One of the most important contributors to the development of my approach to this topic was considering the cost of inaction on my daughter. In his book, “Tools Of Titans”, Tim Ferriss (@tferriss) talks about fear setting and overcoming the obstacles we think are present or even place ourselves. He suggests considering the “atrocious cost of the status quo” be it emotionally, physically, financially, and so on. As a parent of a child with special needs, the cost of inaction has a truly significant negative impact on my daughter’s well-being and it also, as it happens, has a significant impact on mine because, as you’ve read in my other articles, I am her Champion. It is my privilege and my duty to safeguard as much as it is to inspire. And if I fail to do that, what will be the cost of my inaction to her in 6 months, and one year, and in three years? But also, what is the cost of that inaction on me? Can I look at myself in the mirror and like/respect/recognize the person staring back at me? Does my idea of myself align with the reality of how I act such that I live with integrity?

Finally, there are times in our daily routine when we forget that our children are autonomous if not independent; when parenting gives way to care-taking and it doesn’t occur to us that perhaps we are projecting our concerns onto our children, or vice-versa, and at the very least equally damaging – though press me and I’ll tell you it’s far more damaging – failing to listen and acknowledge that something is a concern or struggle or for them; falls into their BIG deal bag even if it didn’t even register as a deal at all to us.