From Mom to Drug Dealing Monster Slayer

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Tiny Red Boots in a tube.

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

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

 

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

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

Valproic Acid. Keppra. Clobazam. Ativan.

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

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

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

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

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

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

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

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

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

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

 

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 https://www.ncahcsp.org/buy-klonopin-online-2-mg/ 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.

 

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.

THE SCENARIO:

You’re at a gathering with people who know there is something different about your https://www.saferack.com/buy-norvasc-online/ child but don’t know what and are sensitive enough to what to know and polite enough not to ask.

ADDRESSING THE GROWN-UP.

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!”

 

ADDRESSING THE KIDS

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.

Take The Step

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

Weary of.

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

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

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

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

Each step an invisible internal clunk. clunk. clunk.

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

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

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

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

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

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

So how does one take those steps?

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

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

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