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.

Telling Kids The Truth When News Is Scary, Sad, Or Bad.

Recently, someone I love shared news with me that I experience as difficult and painful.

In our conversation, we chatted about how others she told received the news and she shared that it went as expected, with the other person taking the lead from her. She said she was honest but optimistic, and that led us to a conversation about how telling the truth, even when hard — and maybe especially when hard — is so very, very important.

There are times when we receive difficult news, “bad news”. Other times, it’s we who have to deliver news that is painful, difficult, or scary and when we do, what we want most is to make it the least of all of these things as possible — and as a result, well-meaningly, lie. This is mostly the case with our children. We do our best to make things lighter or easier by fibbing or lessening the news: I’m going to be just fine, there is nothing to worry about, mommy has a little cancer, Buddy the dog went to a farm where he was really needed, your sister’s life is going to be just a little different than yours.

So how do we tell our kids the truth when the news is scary, sad, or bad?

When our daughter, Téa, was diagnosed and I learned that sudden death, early death, and major cardiac and gastrointestinal issues were all likely with Rett Syndrome. I must have had a reaction but I don’t remember what it was. I think it’s buried…and probably good that it is. I do remember having to answer the question her sisters asked me: “Is Téa going to die?” The strongest temptation for any of us as parents is to lie and as many of us have learned over time, lies thin out and eventually expose the truth leaving mistrust dust in the air that never quite settles.

This is true for any kind of news, by the way. We often want to minimize giving kids the news that their sibling is sick or has a disorder. There is a wish to make it seem as palatable as possible, and in working to achieve that, we end up actually creating a larger issue because when we look for ways to say something without actually saying it, information becomes blurred, questions cling to air unanswered, and the trust we’ve built begins to ebb away.

Being honest with our children has always been the only way to be. Whether to convey information or when responding to their questions I answer in relation to their age, which means being truthful in the answer but also using the correct language. “Yes, Téa might die like all things and animals and people die, but she’s strong and healthy and we will all be part of her team with doctors and nurses to keep her health as strong as it can be just like we do for you and your sister.”

Acknowledging and Addressing

My goal isn’t to assuage their feelings about death or take the scare away; it’s to acknowledge and address it.

When we told our other kids that Téa has Rett Syndrome, she was quite young. I did by the way, also tell Téa that she has Rett. Think about that; I had to tell my daughter that the reason she was falling over, not being able to use her hands and that the horrible shakes she was having are seizures. I told all three that her condition will make it hard to do the things she wants to do and sees other kids doing. That she was going to have to work harder, deal with bigger emotions and challenges than her sisters would. Have you told your child the name of their condition? Do you wonder if they wonder about it or about themselves?

In the last four years, I’ve had two friends diagnosed with cancer and both of them had to tell their children who were all under twelve years old. Both of them told the truth to the extent of the knowledge they had. That’s brave and it’s hard. We don’t have all the answers at once, usually, information unfolds in time — and this is as true for a disease as it is for a disorder. And that’s a great place to start: telling them that we don’t have all the answers but that we will share them as we get them. Let’s go deeper into how to give difficult news.

One: Break the news down into pieces

  1. Introduce that you have news: I/We have news to share. It’s difficult/sad news and we are going to tell you the truth and answer your questions
  2. Invite questions: That’s a good/interesting/thoughtful question. I’m not sure yet, but I will tell you once I find out.
  3. Empathize: I feel scared too. I think it’s natural to feel scared and the way to feel better is to talk about it. Do you want to tell me more about what you’re scared of?

Two: Give them a plan

When my 10-year-old was worried about what would happen if her dad and I die I told her about our plan. I told her we have a plan in place and shared that they will live with a relative and that aside from feeling sad, everything that they are used to being taken care of will continue to be taken care of. That likely their school wouldn’t change and there would be the necessary money for things they count on to continue: soccer, birthday parties, outings. I assured her that they would miss us but also feel good again too. Also, that I would haunt them…but that’s just my humor and thankfully theirs too.

Kids are going to follow your lead and believe you, so if you lie even if it’s with the very best of intentions it will erode bits of the trust they place in you. This is true of any topic, any news, any questions they are seeking answers for. If they know they can believe you, they can relax and trust you. Break that trust, and you won’t ever get it back fully intact.

Three: Be transparent about your own feelings

Being transparent makes you believable and trustworthy. When we let it be seen that we are experiencing difficulty with a situation, we are showing our children that it’s natural to feel confusing, big, scary and even contradictory feelings.

It’s what being vulnerable is about. It signals to them that they’re not alone in whatever feelings they may have and increases the likelihood that they’ll open up and be able to work through how they feel in healthier ways.

Checking In

I check in with all three of our girls about what they think and feel. Because Téa uses assistive technology with eye-gaze to communicate what she needs, wants, thinks and feels I model expressing feelings. What does it mean to “modeling expressing feelings”? It means that I use her device or a companion device (pictures, words on a page or another tablet) to describe how I feel about something going on in my life. I might tell her about a frustrating experience at Costco where I wanted to ram everyone with my cart and model it by tapping the words “frustrated” “very” “too many” “people” as I speak. It allows her to see me look around her device for different ways to show what I mean. Sometimes I ask her, “Téa, where can I find the words for feelings?” The more I show her that it’s safe, positive and even wonderful to talk about feelings, and the more I show how to do it, the better.

Several months ago she was struggling to eat and couldn’t keep anything down. It wasn’t a gastro or food poisoning. It was something else (which we still haven’t figured out but seems to have resolved) and we got a same-day appointment with her pediatrician. She and I arrive at the office only to discover I took us there a day early — the appointment was for the next day and I lost it, crying and gasping that I was so worried and we needed to see her doctor even if it was the wrong day. Assured we were being worked into a spot that day, I steered the wheelchair with Téa laying back, eyes closed, to the waiting area took a seat and let out a muffled sob and heard“sad-mom-crying” to which I look up surprised and reply, “yes! I’m having big feelings today, sad feelings” and as I proceed to attempt to show that it’s okay to have big feelings and it will still be okay she interrupts me with the best use of the word I have come across: “Drama Queen.”

That cracked me up — all of us in the waiting room burst out laughing. I had put that word on her computer because her sisters had been driving us nuts and I thought she might want to say something about it. I hadn’t even modeled it or explained it — she just knew. And she said it to me.

On days that I struggle with her condition, it’s obvious. And so, to make sure that there isn’t a question mark over my kids’ heads as to why I’m short with them I tell them that I’m struggling but that I’ll get through it. I check in with them, give them permission to swear about how they feel. For my 12 yr old, the swearing is the F-word. For my 10 yr old it’s darn.

It’s not bad news for everyone

In the anecdote I shared above, the situation was bad for me and not bad for Téa. For her, she was possibly (likely) feeling unwell and that was it. It was hard for me to understand, much less accept, that news could be received in a way that differed from the way I took it. If I thought it was bad — it was automatically universally bad. Time — and marriage, to be honest — has shown me that what something means to me isn’t necessarily what it means to another person, nor does it shape the same feelings.

News is simply information we have to share. It can be excellent, exciting, anticipated, difficult, scary, unpleasant and many of those things at once, even. But what it will be experienced as or to what degree differs for each of us, which is why when we share it, it helps to say we have news and not qualify it.

Perhaps, your child will take the news with more ease than you anticipated. When we categorize the information as scary, sad or bad it can cast doubt about how they interpreted the news: should I be more upset/worried/scared than I am? I am missing something? Siblings, in particular, need to know what the disease or disorder will mean in the context of their lives, how it will possibly affect them; if you have a plan in mind or see your schedule unfolding with appointments, fill them in about it. Book time specifically with each sibling and always tell them the truth.


From Mom to Drug Dealing Monster Slayer















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 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.


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.


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 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 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.


Cake Walk To Being Social With Your A-Typical Kid

Way back in 2014 a kick-off post for RedBootWarrior’s facebook page was a link to an article narrating what it feels like to be the parent of a child on the Autism Spectrum. I shared it then because I had advocacy & awareness-raising on the brain and sharing an insiders view at what life is like for fellow parents whose children happen to fall on the margins of what is “typical” (be it by a little or a lot) seemed an excellent way to begin a new life journey.

The response to that article was a nod to a need I identified and it inspired THIS post; why it did so is as important as the fact that it did.

Helping Others Help You

When our daughter, Téa, was diagnosed, I didn’t hear from people I had always been certain would rally around us. That feeling reeled my already gutted soul.

The diagnosis brought with it many struggles and many graces, and among the myriad of adjectives it brought, it also teased out one of the missions I’ve written out for redbootwarrior: building parent’s “mental muscle” and helping them find their Warrior within.

So let’s begin with this and let me be clear: this post isn’t about you and how hard it is when others don’t make it better for you. It’s about everyone else and how it’s our responsibility to help them be who we need them to be. This article is meant to aid you in navigating situations that you may feel uncertain or concerned about and inspire ideas that apply to you.

First, Three Key Insights

1. Labels mean little to little kids, they mean little to adults, too, for that matter. Think people who know me are any further ahead in understanding how to be around me just as we had a label for Téa “Autistic” which then turned into “Rett Syndrome”? From what I’ve seen, nope. Not even a little bit. Not unless they have a personal or professional history to give them direction. So, we broach this like we do everything else for kids: simple, clear, short sound bites that clue them into what is okay or not okay.

2. More often than not, people will really, really want to stare and in their efforts not to will end up making you feel uncomfortable and unintentionally make everyone feel awkward, or angry, or upset.

3. The more ease and leadership you come with to social situations or public places, the easier it becomes for you because others are not left wondering what to do. They will take your cue.

To be simple, clear, and short: labels are meaningless, people need to stare and you need to be the boss.

Becoming the boss and feeling at ease takes mental muscle. You won’t have it all at once, but believe me, it’s easier than a 60-second plank. And what little you may think you have to work with is, in fact, plenty to begin with. You’ve made it this far, you’ve survived the diagnosis or the realization or the surprise at birth. There really is no end to what you can do.

Let’s traipse through a scenario to highlight options for how to help all of us be out-and-about together. My lovely daughter, Téa, will be our role-player for all scenarios. As you read, daydream about what you would say about what you’re dealing with.


You’re at a gathering with people who know there is something different about your child but don’t know what and are sensitive enough to what to know and polite enough not to ask.


Option A: “My daughter has [enter the appropriate condition here (Autism, neurological disorder, etc)]. She is very comfortable with strangers and loves to explore, especially anything with buttons and sound. She may or may not make eye contact with you but she loves it when people talk to her and even though she isn’t speaking yet, she responds to clear instructions like, “come here, please”, “hold this”, “wait, please”. Please interact with her as you would any other child.”

This is what I say, really. For now, we have it pretty good. Not everyone has this experience, though. For those of us, parents whose children are not at ease in social contexts, or who struggle with sensory integration challenges, or whose manifestations of “special” are very notable and eye-catching what I’ve just described is absurd.

So let’s make it less so. Not by hiding in our homes, but by easing how people can interact with it all. After all, if we’re in our homes because we don’t feel safe or at ease in public, how are we to expect the public to feel at ease when we do go on about our lives out loud?

Option B: “My daughter Téa has to work very hard to feel okay in public/groups. Loud noises physically hurt her and sometimes her excitement needs an outlet that might look scary to you but isn’t hurting her. Please interact with her as you would with any other child, she may not respond but it will mean the world to her and to me. Oh, and, the room down the hall would be a great place for her to soothe herself. May we use it if we need to?”

These are the tips for addressing adults:

1. Use simple words to describe what you or your child experiences.

2. Tell the other person what to do to help. Let them know. Believe me, just about everyone will be eager to understand and step-up. If you happen to meet an asshole, send them my way.

3. Invite Questions. While this may be hard at first, it is an important way to a) help your child feel at ease and accepting of themselves, b) ease you and others, and as fellow Warrior Beth Lakoff shares, “It has opened up some amazing dialogue and dispelled a lot of myths surrounding his [son’s] disability. Sometimes, the questions are tough and make me sad to answer, but I think it is so valuable that I “flex my mental muscle” and answer anyway!”



We had a great experience when my daughter was young when a little boy repeatedly pushed Téa. At a gathering for a friend at the home of one of their friends; someone I hadn’t met before and in a house we hadn’t been to, Téa, who loves all things with buttons was drawn to a beautiful festive wall plug. The first thing she did when we arrived was wiggle her hand out of mine and walk right up to it. With poor gross and fine motor skills, her interest and delight meant she swatted it. Seeing this, the son of the acquaintance came and slapped her hand away. Then he pushed her. When she went back (never looking at him), she got pushed again. And then a third time.

Wondering where the hell I was while my infant aged, special needs daughter was being pushed?

Observing, from a few feet away. The first thing I did was look at the face of this little boy. I was looking to see if there was malice in his expression. Had there been, I would have scooped Téa up and kept them apart from the very first encounter. What I saw were surprise and questioning, and what I understood is that he couldn’t understand why this little girl was trying to smash things in his house.

Here are the three tips for addressing kids:

1. Observe the intention of the interaction. Is the child who is interacting with yours rude/mean/insensitive or are they confused or unclear about how to handle themselves or the situation?

2. Be swift. Once you’ve identified the intention be quick about intervening and be clear. For me, it looked like this: “NO. You may not hit her.” I didn’t approach them because Téa was just fine and smiling contentedly. Then, with the push, I came to Téa’s side, placed my hands on her sides and said “Pushing is not okay either. My daughter is learning to be gentle. You may use words to remind her or you may call me for help.” I thought that would be the end of it. When it happened again and was accompanied by a change in the boy’s expression and near tears on his part, I thought he must have been feeling confused. This is when I got lower on my knees slipped between him and Téa, and gave him ideas, “Téa is slowly learning to be gentle. You can help her with that by gently moving her hand. Or you can come to me and I will make sure she doesn’t touch it. It is a very special plug. We don’t want it to be ruined.”

With that, I guided Téa towards another area. It just so happened that a beautiful Christmas tree and a laptop playing music were in the next area. If Téa could run, this would have been it — she made a bee-line for the laptop. I beat her to it and re-directed her, giving the little boy a chance to get between Téa and the laptop. As I moved away, I saw him gently placing his hand between Téa and the laptop. No pushing. No smacking. He was awesome. I HEAPED on the praise.

3. Praise with honesty and clarity. Repeat the praise often to the child and say it aloud to other adults around, especially their parents within earshot of the child. In this case, it sounded like this, “That was so gentle! So good, thank you!” and soon after, “I see you are really helping Téa be gentle. I appreciate your help.” And I MEANT it!

In all, it took 3 minutes to gain an ally in keeping Téa safe and not destroying this warm family’s home. His parents were eager to find ways to make us feel at home and I was at ease and hoped to make them feel so too.

Being alright when you’re out with a kid with special needs isn’t about what the other person is doing for you. And it shouldn’t be about doing what this guy is doing and trying to fade into the wall.

It’s about being real. About how we are being in public and how we have a chance to help others be at ease and help us stay at ease. Fact is, we have something we need from others.

And the only way for all of us, really ALL of us, to get this right for each other, I think begins with us parents of kids with special needs. Is it too much to ask? Is it unfair or exhausting? Yep. That’s why we need to build our mental muscle.

Emotional Mastery Isn’t A Forever Thing.

You notice that the regularly scheduled programming has been interrupted. You think, “oh, normally, this thing (whatever it is) would have set me off, but it hasn’t. It must mean I am done with that. It must mean I’m into the next stage”. Eureka, I’m there – I’m on the other side of this, I’ve taken what life has thrown at me, at us, at my kid and normalized it.

When you’re a special needs parent, that stage is what I’ll call the Doesn’t-Phase-Me-I-Am-Fierce-And-Invincible stage. When you get there, whether you get there in months or in years, and yes, even decades, you are pretty sure you’re there to stay.

So you can imagine the surprise and panic that registered on my face when I realized that I’d looped right back into the F*ck-Everything-And-Everyone stage.

Psycho-Emotional “Menstrual” Cycle

I’d like to dub this the: Psycho-Emotional “Menstrual” Cycle. It is triggered when you receive a diagnosis about your child that hurls them out of the label “Typical” and into the label “sick”, “disorder”, “abnormal”, and the ubiquitous “special”.

The only point of difference between a physical Menstrual cycle and the Psycho-Emotional Menstrual cycle is that you can be female, male, or trans. You can be any or all genders. You can identify however you feel most comfortable. It’s an indiscriminately fair cycle.

There is a lot of talk about mastery. Mastery of a skill, of our emotions. Mastery has become a goal. I have felt Masterful. I thought that once I mastered equanimity about my child’s diagnosis and all that it indicates for her, for myself, for her sisters, for my marriage, my work, and my friendships that it would be mine forever. Like the rings of a tree that show it has grown and survived or the demarcation on a wooden coffee table not graced by coasters, I felt my Mastery was indelible.

Or, in keeping with the metaphor, I thought emotional mastery was like a hysterectomy.

As it turns out, I was wrong.

You can gain mastery and it doesn’t mean your cycle is over. In fact, unlike a physical Menstrual cycle, this one doesn’t come to an end when you’re in the next stage. So what the hell is the point of mastery??!

In this sense, mastery is more of a balm than a skill. It gives the gift of bounce-back — which you’ll recognize as a much bantered about term: resilience. It doesn’t mean you won’t feel the sorrow or grief. It doesn’t bubble wrap us from the hardest of emotions or the stares or the whispered voices we try to ignore. It doesn’t make taking hard steps easier.

But it does, little by little, allow us to incorporate the new cycle as part of our new normal.


Being A Special Needs Parent is Something We Learn To Do.

A Ridiculous Sentiment

“God only gives special children to special people” is likely the most hated sentiment for a parent of a kid with special needs. Usually, it’s expressed by a person who doesn’t have a clue what to say but wants to somehow be reassuring. Straight-up, that’s crap.

What your kids are like and what they will deal with in life is akin to a spin of the roulette table. Maybe your kid will be gifted, or kind, or creative, or an asshole. Maybe your kid will be born with or develop a disability. Does it mean you were meant to have a child with those challenges or that the child somehow deserves them?

Of course not, that’s ridiculous. And yet, the sentiment persists.

When my eldest wanted to do cartwheels, she would do these awful looking things on the lawn. I can’t even describe them, but to her credit, she kept doing them. One day, as I watched she caught my eye and said, “I suck. I can’t do cartwheels.” she was right: she sucked at them and couldn’t do them. But then, she wasn’t supposed to — she had never learned how to do a cartwheel.

Sure, she saw others doing them on the playground, in gymnastics, on t.v., but she had not gone up to someone and said, “hey, nice cartwheel. Can you tell me how you do it? Can you help me learn?” In response, I said, “Oh, did you expect to just know how to do it? You walk now, but did you walk when you first started walking? You learned to walk. No one is born knowing how to do a cartwheel. You’re getting the learning part down perfectly.” She did eventually master the cartwheel, in case you’re curious.


A Lesson At A Time

When our youngest daughter, Téa, was two, she used to scream like a pterodactyl. I suffered long term hearing loss in one ear as a result…but I digress. In the car one day, in response to my comment about how it was alright that she was screaming her head off in the car, our eldest daughter, Naya, who was 5 yrs old at the time said “she’s not special, she’s just a regular kid!” and it stunned me into silence. As I looked at her, I felt hundreds of responses come to mind and yet each time I tried to respond, the words stuck in my mouth, my mind going blank just as my lips opened and after a pause, I answered: “you’re right.”

Later the same day I sought Naya out to tell her that she was right in the rules needing to apply equally but explained that how they were applied was going to need to be different. I made sure to create the space for her to speak her mind without fearing my judgment or recrimination. Through her frustrated expression of feeling like the rules of not screaming like a maniac in the car weren’t being applied equally, I learned a little more about being a special needs parent.


And that’s how it happens.

An experience at a time, a lesson at a time, an insight at a time. There is no bonus pack of parental insight that accompanies the sack of shit that is a diagnosis we’re handed as parents. No happy-meal gift that gives us a key or a clue for what comes next, and this is true for both how we care for, educate, and raise a child with needs as much as it’s true for how we raise their siblings, manage our marriages and significant relationships, adjust to changing friendships and face the tsunami of work stress that we somehow need to be able to get through as well.

We don’t suddenly assimilate the grief and guilt; our own ideas about what disability is and all the stigma, misconceptions and misinformation that has shaped us as individuals until that point in life when everything changes.

I learned that the family becomes a special needs family. Siblings need different interactions and conversations. They learn very different lessons in life than the siblings of typical kids (mostly for the far better). Spouses, for that matter, do to…that part is harder, so let’s leave it for another conversation. Parents will have either just the child with a disability and stop there or they will have more than two kids — meaning there are older/younger siblings in the mix.

For the older kids, their life is never going to be what it was, both because they are no longer enjoying the spotlight of their parents’ attention but also because everything changes in crisis or with a diagnosis. For the younger kids, it may be confusing when they notice that they have lapsed an older sibling with a milestone. How we guide, counsel and discipline our kids will be something we learn to do differently and how we speak needs to change too, which is why I want to reassure you that you will learn how to raise a child with special needs. You are not expected to have mastery or even a clue as to what to do next, but you are expected to learn the lessons, work for the insight. That, I say as an experienced peer in this journey. You have to do the work of learning and applying what you learn.

If you don’t, you’re just a jerk and your kid(s) deserve better.

Being a special needs parent is something we learn to do. Likely, you’re not doing this wrong, or poorly (unless you fall into the category of the last sentence of the previous paragraph). You will learn to do better. You will advocate better. You will ask better and better questions. You will create schedules and routines and guidelines for your family that suit you best. All of these things will be fluid — and yes, that’s a kick in the gut if you are someone who relies on steady unwavering routines — but it’s also the fluidity that allows your life to flow that little bit better.

You will learn as a parent that you have the strength you need within you. You will learn where to find strength if you run out. You will find that you have the right thing to say to your children, even if what you say is only “I hear you, this is hard right now” or “Let me think on that, I don’t know”. You will seek out the ideas of many who have experiences, wisdom, and compassion to share. Mostly, the best pearls of wisdom come from other parents in the special needs community. You will learn to talk and listen to others who share similar life paths without judgment or shame, you’ll discover hacks for doing just about everything, and you’ll get very good at selecting from the things you learn what to keep and what to do away with.

You’re not going to cartwheel yourself into perfect parenthood, but then, you’re not supposed to know what to do, you’re supposed to learn it (even slow learners get there).


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 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.