Illusions of Beauty layered on Brokenness

Today’s been a hard day for me.

Jon and I have been discussing getting away as a couple.  We need it.  Desperately!

Trying to sort out care for our children is hard.  It brings up insecurities and hurts from the past; and while there are truths that I know, I struggle to move beyond the feelings.

So many tears today. So many feelings.

I watched a TedX talk today and while it was an incredible talk….it highlighted things that I stuff, in an effort to cope.  There are stressors, as special needs parents,  that we just can’t escape or lay down and walk away from.

Exhaustion
Inadequacy
Trauma
Rejection
Brokenness
Grief
Judgment

There are times when I feel capable to carry on.  Other times, like today, I don’t know what to do.  And the tears fall, uncontrollably.

In an effort to pull myself back together and because we are supposed to be going out tonight (to connect with other parents of ASD kids), I do my hair and put my make-up on.

I layer on cover up, foundation and powder, in a effort to combat the destruction of a day of tears.  I  paint on my best smokey eye and in whispers, threaten myself to not mess it up…..as if sheer willpower alone, could hold the tears inside.   I curl my hair and back-comb it into submission.  It’s something I can control, in this uncontrollable chaos that is my life.  I spray on layer after layer of hairspray creating a shell, a protective layer of armor.  Creating the illusion of beauty on top of a layer of brokenness.

That should be my new tagline……

Illusions of beauty layered on brokenness.

 

Don’t Pick Up The Rope

Imagine that you are a child, standing on the edge of a cliff. You look up and on the other side of a deep gorge is another cliff. You look over to the side and there is a rickety looking string bridge. You aren’t certain of its ability to carry you safely across to the other side, and so you refuse to move. All your friends are on the other side and it looks like they might be having a lot of fun. But you refuse! You aren’t really sure how everyone got over there, but that bridge looks unsafe and safety wins out over fun, every time. You decide that you are not going ANYWHERE.

People suggest that you come over to the other side. You want to but……….refuse!
They tell you that you have to come over. You really aren’t sure if it’s safe…….so you continue to refuse.
They start to insist that you come over. That isn’t helping, you feel pressured and uncomfortable…
Voices get louder, more commanding and more demanding. You continue to dig your heels in and refuse to comply.

The harder they pull, the harder you pull…..just trying to remain safe.

 

All of the sudden you realize that people are pulling and forcing you towards the bridge.

You resist.
You yell.
You’re scared.
You scream.
You panic.
You start to thrash and flail.

You do anything to protect yourself from the uncertainty of what’s before you. In a blind panic, and completely incapable of rational and reasonable thought, you bolt. You run. Or conversely, you curl into a ball and cram yourself into the smallest corner available, so that no one will be able to force you into, what you are sure is, an unsafe situation.

How many times have we asked a child to do something and then been frustrated when the situation devolves into anger, defiance, rage or physicality? You don’t really understand because what you’re requesting is not something weird or terrifying. It seems a pretty simple request and yet……..the child is labelled oppositional, non compliant or defiant.

I hate those three words. Very rarely are those accurate adjectives to apply to a child.

I believe that we need to approach children from the viewpoint that they WANT to please and they WANT to succeed. If behaviours arise that appear contrary to them pleasing and succeeding, WE NEED TO PAUSE.

We, as the adults, need to question “What is at the root of the negative behaviours?”

Why this this child feeling anxious?
Why is this child feeling insecure?
Why is this child feeling less than capable?
What is feeling overwhelming to them?
What is feeling uncertain?
What is unclear?
What information are they missing or unsure of?
How can I help?

Going back to our picture at the top of the post…. Here is a different view of that situation.

You are, a child, standing alone on one side of the cliff. You are aware that you are missing out on what seems like fun on the other side. You feel alone, anxious and unsure. You are desperate to feel accepted and safe; and while you wish you could go over, safety wins over fun, every time. You realize that someone is calling your name. They crouch down beside you and ask if you’d like to join the rest of the class on the other side. You aren’t sure how to answer because you are scared. They start to explain what the rest of the kids are doing and it sounds SO fun. It’s too bad that the bridge is the only way over. They explain how the bridge was made and how many pounds it can carry; and that makes you feel a bit better but you’re still not sure you can believe them. They call another kid over, who crosses that scary bridge, and together they show you how two people can cross the bridge. You are still unsure. They tell you that it’s okay and that they will stay with you on this side. That makes you feel a bit better. They share a time when they felt scared and uncertain. You want to join your classmates but you really aren’t sure. You realize that the person isn’t going to force you but will stay with you and that makes you feel a little bit safer and a little bit stronger. You eventually agree to try to cross the bridge even though you still feel scared. It might take you longer, but with acceptance and relationship you can accomplish amazing things.
Instead of calling for the child to take action and then labeling them as non-compliant, what if we made the effort to understand and accept?

What if we stopped pulling on the children, which is only increasing their anxiety?
What if we didn’t “pick up the rope” in the first place?
What if we joined them, and validated their feelings and emotions without having to fix or change them?
What if we made sure they knew and understood the facts and information? 
What if we found out what they were fearful of?
What if we explained how the bridge was made and why it is, in fact, safe to cross?
What if we explained exactly what was happening on the other side?
What if we told the child that we would cross with them?
What if we gave them the power to make the decision and until they did, we sat with them and gave them the opportunity to feel safe and accepted?
What if we built relationship instead of building conflict, opposition and disconnection?
What if we allowed the time and space for a child to feel safe?

I believe that this scenario plays out, at some point, with all children but that it’s especially true for children with anxiety, special/high needs and neuro-diversities.

It’s important to recognize that the majority of opposition and non-compliance stems from anxiety and insecurity.; and that we have the ability to make a difference in the way we view and approach children. We need to look beyond the bravado and indignancies of anxiety and insecurities; and see the cries for help.

We need to build trust and relationship instead of building conflict and disconnection. We need to join with them, where they are at; and when we have built a solid relationship founded on trust, we will go so much further than we, or they, could dream or imagine.

Don’t pick up the rope!

A Letter to my Children

photo from 2015 (we definitely need an update)

To my Children,

I love you with all my heart and I only want the very best for you.  This world we live in, now,  is a funny place.  There was positive Peer pressure when I was growing up that I don’t see happening, now. Not that there aren’t good people out there, but it seems like some of the “common sense” life lessons don’t hold the same weight now as they did then.  Those “life lessons” are just as important now, in fact, they may be even more important but they aren’t as prevalent.  I realize that talking like this only widens and exaggerates the age gap between us but I feel that there is a limited time for me to influence and instill  these values within you.  I know that I tell you these things, ALL THE TIME (insert massive eye roll here) but I think these are too important for me to remain quiet.
1.    Work Hard

I don’t care what anyone around you is doing or how hard they are working. Your employer is paying YOU for your time. Give them your best.  Lead by example.  Set the bar high.  You will get noticed and your efforts will never be in vain.  Your best may look differently than that of others around you.  I’m not holding you to someone else’s standards……YOU do YOUR best.  And always be aware of what around you is needing to be done.  Pick up the slack. And if you don’t know…..ASK!  Communication will be your best tool, in ALL ASPECTS of life.

2.    Be Respectful

Let the virtue of Respect emanate from  every cell of your being.  Be respectful in your actions, with your words, to your employers and fellow employees, to customers…..to humanity, in general.  But also be respectful of yourself.  If you respect yourself, others will respect you.

3.    Set Boundaries

Setting boundaries is critical.  Work hard and then let it go, when you are done for the day.  It’s not your job to carry the weight of the world.  You are not responsible to do more than you can.  If you work hard, and work smart; be proud of what you’ve accomplished and don’t carry the weight of what you couldn’t do. Take care of yourself, because YOU are responsible for your well being. Setting boundaries is something that needs to be learned and exercised in ALL areas of life.

Get good at setting and enforcing YOUR boundaries.

It’s critical to know what things that you are responsible for and what things you are not responsible for. Take care of the things you are responsible for and learn to be okay with letting the things you are not responsible for, go.  As your Nana says, “Not my pig. Not my Farm.”

4.    Be okay with saying  NO.

It’s okay to say no.  If you work hard, and are respectful…..then setting and honouring your boundaries is ok.  You do not have to accept every shift or help out everytime you are asked.  Do what you can/want/need to do, but also know that too much is not a good thing. Being available is one thing but being “used” is completely different.  Practise saying “No.”  I know that sounds silly, but it’s an important skill to learn.  Unfortunately, too many people haven’t learned to say it, and then end  up burned out and resentful towards others, when it’s their own lack of ability to set and enforce personal boundaries.

5.    Know your Value, Your Worth and Your Principals

Yes, I know you are still figuring your self  out BUT……You do have value.  You do have worth.  and You do have principals.  Knowing who you are and what you stand for will make a huge difference between allowing yourself to get pushed around and being a leader.

  • Know what you want or don’t want
  • Know what you are okay with or not okay with
  • Know whats important  to you and what’s not important to you

These things require actual thought.  If you do not make a decision, you have still made a choice.  Every choice has a consequence.  Its that whole Newton’s Third Law thing……

6.    Weigh Your Choices and Be able to Live with the Consequences

When faced with a decision, look at all sides and determine the likely consequences.  Think through what you are willing to deal with and move forward confidently.  Choices have consequences, some positive and some negative.  You may need to make a decision and have to choose which negative consequence you are willing to live with.  But allowing things to happen and saying its “out of your control” isn’t respectful to yourself or others.  Own your choices and the resulting consequences.  Be Purposeful in your actions and words.

7.    Choose Your Feelings and Emotions Wisely.

You are responsible for YOUR feelings and emotions.  Choose wisely.  To say that someone else “makes you so mad or angry” is giving them the control over your emotions.  Take responsibility for your own feelings and emotions. Don’t allow the “emotional weather” of a place, person or situation dictate your emotional response.   Only you have the power and ability to dictate what you feel and how you choose to respond in any given situation.  Choose to make the best out of every situation and allow others their right to their own feelings and emotions.  Other peoples negativity should not define your life.

8.      Balance

Finding balance is so important.  Family, Friends, School, Self and Work  (Listed in Alphabetical order not in Position of Importance)  are all important.  You must work to find the balance.  It requires effort to do so.  Again, not making the effort to “find balance” is still making a choice……and probably one with negative consequences for yourself and those around you.

9.    Community

Finding your Tribe, Village, Community, or whatever you want to call it, is also important.  These days, we seem to be so caught up in the busy-ness of life.  But it is critical to have people that you can give into and draw from.  We all go through ups and downs, but having the opportunity to give and receive love, support, advice and even challenges, helps us as we navigate this crazy journey.

10.    Rest

I’m mentioning Rest, because it’s something I believe that we need to be intentional about.  Whether its a long bath, a walk along a river, journaling, art, etc……..I believe that it’s critical to disconnect from the busy-ness of the world, to do something that “feeds” your soul; and recharges us, wholly (physically, mentally, emotionally and spiritually).  Your cell phone wont work without being charged and you won’t either.  It may be possible to limp along for a bit but in the long run (and life is a long run) you have to recharge, you might as well be intentional about it.

My Darlings,

You have been given an incredible gift.  Life is a gift. You have the opportunity to make it incredible or to squander it.  Be Purposeful! Be Present! Don’t stand by, passively, and allow life to carry you along.   Be intentional!  You have an incredible opportunity to create a life that you love and can be proud of, regardless of the ups and downs that life brings your way.  

I promise that I will continue to remind you of these things but know that I see you. I see  the incredible people that you are, and that you are becoming; and I am so very VERY proud of you. You are amazing.  You are incredible .  I am confident that you will grow and impact our world positively, just because of who you are.  Keep on Keeping on, My Loves! 

Momma

Authority & Respect

Things have been a little messy inside my head and in an effort to clear it all out and put it in some semblance of order, I’m gonna start writing to try and make sense of all the thoughts I have.  Most of this will be in regards to how I parent and raise my kids.  Some will deal with Special Needs Kids, some with Anxiety but I find that having to write it out concisely helps me to package up the million thoughts running around in my brain.  Please feel free to ask questions or to share your own thoughts on the matters.  I’d love to dialogue about these issues.

 

It’s often difficult for us, as adults, to make a call and then go back on it. We often view those scenarios as allowing the child to get their way or to dictate the situation.

I’d love to offer a different viewpoint.

Your authority is as strong and irrefutable as you believe it is;
and as you stand in it.
I believe that too often we parent, teach or lead from a viewpoint of fear. Fear that those under us will no longer accept our authority and then we will have to fight twice as hard to get it back, if it’s even possible. That understanding assumes that my authority is fallible.

Now, I don’t have authority everywhere in the world…… But I do have authority over my domain…..and the only way I can lose it, is if I abdicate that authority.

I used to think that if I told my kids something and then changed my mind, that it would undermine my authority and that I would lose all sense of control because they would feel they could do whatever they wanted by whining more and wearing me down.

For example…

They‘ve been whining at me all day and by late afternoon, my instinct is to just say no to everything. Finally one of them asks, can we have popsicle and go outside to play.

I say NO, because it feels like rewarding them for their bad attitudes and actions; and it’s so much effort to get them all ready and to drag all their crap out of the garage. I say no because its my first instinct after a tough morning and I am exhausted from their constant efforts. Even more whining and squabbling ensues…..

I pause and think about it for a moment and decide, The popsicle is liquid that they need (well, maybe not the sugar). The mess will be outside (YAY) and they really need to get outside and burn off some energy. In the end, we will all be happier.

So, I say, go get your shoes and coats on…..they say YAY! and that’s the end of it! They play and come in refreshed and I’ve had a moment to regroup and its all good.

Is my authority undermined because I changed my mind, NOT A CHANCE!
Are my kids going to continue to try to whine at me to get their way? ABSOLUTELY
Are the two connected? MAYBE BUT…….
Have I lost or damaged my position of AUTHORITY? NOT IN THE SLIGHTEST

Most likely, they are going to continue to whine in the future because that’s their immature attempt to gain control over a situation and get a favorable (for them) outcome. Their immaturity has a huge selfish, self-centered component to it. It’s my job to show them other methods and ways, to ask for what they want.

I’m not a fan of whining and will often stop the whining and ask my kids to try asking in a different voice and see how that changes things for them. I don’t get upset that they are whining, but I continue to train and reinforce the acceptable behavior. I tie so many of my parenting ideologies back into real world situations, because that’s what I’m raising these ones to do.

I’m raising my children to be respectable and respectful, contributing members of society.
 

They shouldn’t whine at their boss or teacher. They shouldn’t squabble with their fellow employees or students. I have the privilege of working them through these situations in a safe space and giving them lots of opportunity to practise, so they grow up and it becomes first nature to be respectful.

My entire parenting style is based on respect. I want to be treated respectfully. I will treat you with respect. My desire is to train young children into adults who are respectful of others and who’s very being, draws respect back to them.

I want to model how to react when you are not treated with respect; and to teach that a lack of respect shown towards you does not give you to right to match the level of  disrespect and dish it back.

Knowing who I am and the position of authority I hold,
within my family, is a game changer.
 

Yes it’s possible that someone might challenge my authority or be disrespectful but their words, thought, or actions don’t change the reality of my authority.

….their words, thoughts or actions don’t change the reality….
 

I’ve shared this “nugget” with my kids for years. Just because someone says something to you or about you doesn’t make it true or real; and you get to decide the power that those words have over you.

For Example, if Judah calls Josiah stupid, does that make Josiah stupid????

Nope! Let’s change the word stupid for something ridiculous like a cupcake head……..

If Judah says that Josiah has a cupcake head, does that make it true?? Does he all of the sudden have a cupcake shaped head???

Nope! Here’s another example, if Judah says that Josiah has green eyes, does that change the fact that Josiah’s eyes are brown?

NOPE! So a child yelling at me that I’m not in charge, doesn’t diminish my authority.  It’s most likely an indicator that he or she is feeling out of control, desperately wanting to regain some form of personal control and often needing some help to process some overwhelming feelings and emotions.

Words and/or actions don’t necessarily change the reality, especially when it comes to your authority.

I’m the mom (and therefore I have authority within my family), regardless of whether my kids want to live within the boundaries that I’ve set for them, or not.

If I decide to change my mind about something that I had previously decided, that does not make me weak. In fact, I believe it’s exactly the opposite. There is an incredible strength in openly admitting that you’ve made a decision that needs to change. By doing so, you are modelling to those under your authority that it’s okay to rethink something and come up with a better plan. It shows them what transparency and openness,(especially in a position of authority) looks like. It models that its okay to not be perfect. It shows them that mistakes will happen; and how to own your choices and change them if necessary. It shows them that not everything is black and white; and that sometimes you need to reevaluate for the grey situations.

It’s ever so challenging to bypass the thoughts that whisper……

“They’re gonna think they can run all over you. They are going to think you are
weak and that they can change your mind by whining and wearing you down.”

It takes courage and strength to say to your kids, your students or your employees…….

“Okay, just a moment, I’ve thought this through and I think we are going to do it this other way. Which I know is the opposite of what I just said but this is why it will work better to do it this way……..”

Kids and Teens, especially, can see through people. If you make a call and are sticking to a previous decision even though it doesn’t make sense; and you’re doing it because you fear losing the appearance of control. They can see it. They can sense it. And THAT undermines you more than anything.

Model Humility. Model Imperfection. Model Flexibility.
Model Communication. Model Respect.

The Key to the ability to change is a changeless sense of who you are,
what you are about and what you value. – Stephen R. Covey

Good from Bad (part 2)

I’m wanting to put this down here so that I can just walk away from it over the next 2 weeks.  

It’s not that anything HORRIBLE happened but it seems to me that it’s a lack of knowledge…..or, it could be that everyone was tired and emotional.  But my responsibilities lie with the little one in my charge and I have the honor of standing up for him until he can stand for himself.  

My biggest issue with what happened yesterday is the misunderstanding of what was really going on.

I believe children want to do their best and if for some reason they are acting in a way that doesn’t fit the situation……we, as adults, should be asking ourselves “what’s going on under the surface?”

Children want to please, they want to succeed and so often their “negative” or “inappropriate” behaviours are a result of their insecurities and anxieties over a situation that they can’t figure out, control or succeed at.

If our first response was not one of frustration or assumed disrespect, I believe that so many tense situations with our kids could be dissipated before the kids got stuck in fight or flight mode.

Siah was sad and overwhelmed and running away from those feelings and emotions.  The harder people tried to force him to face those feelings, on his own…..the harder he dug his heels in.  The moment that I joined him, in his feelings, and helped him to carry and process those feelings is the very moment that his defences started to come down.  

This is not something that is solely applicable to Siah….this works for every child.  

  • Believe that children want to succeed.
  • Believe that children want to please.
  • Know that something else is going on, if they are acting contrary to those two beliefs.
  • Attempt to determine the cause of the anxiety or anger
  • Empathize with the child ( you don’t have to fix the situation, validate their feelings and check in with the child to make sure they feel understood and that you have the correct read on the situation)

I have found that this works almost 100% of the time to dissolve anger and anxiety.  

It’s almost impossible to work through anything or to teach a child when they are in fight/flight mode.  And anxiety in children often presents as anger.

Anger is usually a secondary emotion to fear or sadness and usually presents when a child is feeling out of control.  

Empathy and empowerment are two of the most critical tools when working with children, in my opinion.

As adults, it’s our responsibility to work with the children and to adjust to their needs and deficits while continuing to teach and encourage in those areas of deficit.

They are the vulnerable and needy. We need to put their needs first. 

I believe that there may have been a personal desire to be in the assembly which may have prompted personal feelings of anxiety for missing a special event.  But…..if the focus had been on why Siah was struggling and not on “just getting him back to the assembly”….the entire situation could have gone down very differently.  

Think of a tug of war over a canyon….with the child on one side and an adult on the other….the canyon is the event or idea that is causing the anxiety…..the harder the adult pulls the child,  the harder the child will pull back trying to remain in a place of safety.  They will quickly lose all ability to reason and rationalize as they struggle to find a place of safety.  If the rope is laid down and the adult crosses over to the child,  they can stand together on the edge of the cliff and talk about the issue without the fear of being pulled into it. Once the adult lays the rope down, there is nothing for the child to be struggling against.  They may be SO terrified that they don’t realize the rope has been laid down and it may take a moment to help calm them enough to see that……but it’s SO MUCH easier to do that beside them, then across the canyon. 

Siah did go in and sing “What a Wonderful World” and I’m so glad he did.  He sat with me at the back of the assembly and enjoyed the videos and the music.  At one point, he leaned over to me and said, “Something good always comes from something bad…..the good thing in this bad situation is that I’ll get to meet a new principal, right mom?”

In the middle of his stress and anxiety and internal chaos……he’s still looking for the silver linings.  I love that.  

Our children will struggle – that’s a given – and some more than others, but it’s our job to stand beside them and to help guide them through, until they are strong enough and confident enough to do it on their own.  It’s a privilege and honor to be able to be there for them, especially the more vulnerable ones.  

I’d love to hear your thoughts on this…..not necessarily Siah’s particular situation but this idea…..this idea that children inherently want to please and that we can help or hinder the situation with our actions and reactions.  Is this a foreign concept to you? 

I’d challenge you to try it then next time you come up against a child who seems defiant…..it will blow your mind!

Clinging and Hope

I cling to the edge of the cliff.  The fingers of Darkness and Despair curl around my ankles, weighing me down.  The continual  rain soaks my clothing, adding to the weight; it makes it harder to hold on. 

I dread the end of summer.  Even as the days shorten and cool, I feel myself starting to wither…..just like my garden. 

I could really use the sunshine and a beach, right about now. 

It’s hard.  I’m exhausted.  My boys are incredibly difficult right now.  We’re long beyond the October crash……this must be the November burn. Crash and Burn!

I’m sick of saying, “It’s hard.  I’m exhausted.” I want desperately to connect and yet…I have nothing.  I have zero energy to attempt connection.  But without connection, I’m alone.  So which is it…… it’s a losing battle.  

Sometimes I feel that if I could explain what my life is like that you might get it…..But I’m realizing that unless you live it, you won’t fully understand it. I share bits and pieces but never the whole….it would be too much to handle.  I know this because it’s too much to handle.

There is a certain amount of grieving.  Grieving normalcy…..But mostly there is just soul crushing exhaustion.  It’s like a cloud of nothingness with vague wisps of sadness and loneliness woven throughout.
I love my children and I hate how difficult they are.  

Autism, ADHD, Anxiety…..Even though they are labels given to two of my boys, our entire family is deeply effected.

There is so much chaos.  I feel like I’m constantly drowning.  I manage to grab small breaths of air….never enough to breathe deeply and the waves crash consistently enough that I’m left in a constant state of  panic.  

There’s only so much space for panic and my two boys seem to have the corner on that market.  Too often when I feel the panic rising, I stuff it back down with a shallow breath.  As if I could control it….

There is so much guilt and shame and yet…..that’s one good thing about exhaustion…..somehow you can’t muster the energy to hold onto the guilt and shame.  You feel it and it makes you feel dirty and worthless; but it’s too heavy to carry and there’s too much to be done….

So you drop it like most of the other balls you drop on a daily basis…..

You cling to the edge of the cliff and hope……you hope that you make it through another day.  You hope that tomorrow will be better.  You cling to the hope that seasons change and that this dark and gloomy season will once again give way to sunshine.  You pray for wisdom, strength, and patience.  

You pray for your kids to just hurry up and fall asleep so you can have a moment to breathe…..then you feel guilty….then you remember how much work there still is to do tonight and you drop the guilt as exhaustion takes over once again.

Courage and Fear

I’ve been thinking a lot recently. This whole idea of pursuing dreams……putting them out there…..it’s terrifying.

fearlessly

It’s an incredibly courageous thing to admit you have a desire but also frightening, especially if you are scared of not living up to a certain standard. I LOATHE judgment…..especially self judgment. I seem to excel that that particular skill.

I was thinking today about the concept of whether or not I had something of value to share…..to release into the world.

That got me thinking……

I truly believe that we all have value; and we all add something to the world, when we share from our own experiences and wisdom.

For myself……I struggle with believing that what I have to share has value and yet I don’t really believe that I’m insignificant. So how can I believe that I am valuable AND think that I’m not…….it’s such a contradiction, no?

In my email signature, I have the Maya Angelou quote “Courage is the most important of all the virtues because without courage, you can’t practice any other virtue consistently.” It’s obvious, to me, that courage and fear are issues that I deal with, and I think that really ties in with what I’ve been musing about today……..

One difference that I see between those who are and aren’t living and embracing their dreams, is having the courage to step out and do….to try…..to move forward.

I want to live courageously.

Now that I’ve figured out what I want……..I’ve got to figure out how to do it……

Frogs Jump – I am a Work in Progress

I am SOOOOOOOOO excited……like a giddy schoolgirl on Christmas Morning excited.

Frogs Jump Title
Click here to check out the book

Go ahead and click on the first page and it will take you to a preview of my book. It’s still not quite finished. I’ve got work, still, to finish up the cover and what I’d like to consider is my signature End Page……ha!

This process has been incredibly exhilarating and exhausting.

I am loving seeing my dreams come to life. I’ve dreamed about writing books since I was a little girl. I dreamed and dreamed and dreamed and dismissed those dreams as frivolous. Anxiety, Self Condemnation and Judgment told me that I was ridiculous to even think about doing something as silly as writing books; even though I spent hours enthralled within the worlds inside my childhood books.

So, I dismissed those dreams. I pushed them down and tried to ignore the longing to “ignite wonder” in children’s minds. Over the years, I’ve written many little stories and songs….mostly for my children, about my children…..and told and sung them to my children.

Seeing this book unfolding and coming to life……it feels like I am starting to breathe after holding my breath for far too long. You know that moment when you break through the surface of the water after being under for a moment longer than you can actually stand…..

And yet, it’s terrifying and exhausting. I feel like I’m in an epic battle.

I feel determined that anxiety won’t win this battle and yet everything in me wants to go back into hiding. It feels safer there (except that whole drowning thing, doesn’t feel all that great). It’s less vulnerable to just keep things status quo. It’s hard to put yourself out there, especially when there is still a huge part of you that doesn’t really believe that you have anything worth contributing. And it’s those thoughts, that I’m determined to…..to… prevail over.

It often feels too terrifying, too exhausting, too overwhelming……to move forward. And yet, I’m holding on to the life giving moments as well and trusting that I’m ready and able to take these next steps.

I don’t even know what the next steps are….but I’m going to figure that out. I hope you’ll come along for the journey. It’s always better to do things with your friends, than to do them alone.

The Perpetual Grief Series

Imagine, if you would, a sunshine filled garden exploding with a riot of colors, sounds and smells. The colors are vibrant and exciting as they effortlessly clash and blend together. The perfume from the flowers and the wonderful earthy smell of the warm dirt and the grass fills your senses. You can hear the wind blowing and the birds chirping…..it’s an incredible experience. You feel calm and peaceful just thinking about that place……..

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Now imagine that you are in that place…….but you have glasses on with grey, smudgy lenses; that you are wearing a backpack with 25 pounds of rocks inside that are weighing you down, giving you a headache and making your shoulders feel so tense and sore. Imagine that you have on heavy boots that make every step you take an extra effort; and you’re exhausted because you must. keep. moving. or something won’t get done. Imagine that you have on headphones and a crowd of people are shouting different instructions at you; and you feel that you must follow all the directions and manage to get everything done that they are requesting or demanding. Imagine that you are juggling but what you are juggling is fragile and if you somehow drop one, there are huge consequences………now imagine that this is every day 24/7 for as long as you can remember and as long as you can see…..You can sort of, almost remember what life was like before the exhaustion and the weight of the stress; but because your “now” is so overwhelming……”before” has become this idealized place that you no longer have clear access to and at times, you can feel very resentful of where you are at, right now.

I know that life is not that amazing sunshine filled, calm, peaceful place, all the time. But my life with special needs kids, 99.9% of the time, feels like the second part of that imaginary place……and it’s exhausting!

It’s exhausting, thinking about it. It’s exhausting, living it.

And with that exhaustion comes guilt, and more grieving.

I have special needs children and sometimes it feels like those children and their “special needs” are my whole world. But they’re not……

I have myself. I, way too often, put myself last and really have nothing to give but everything is required and I give – at a deficit to myself. I end up wondering what the long term effects, physically, mentally and emotionally, will be. It’s only a fleeting wonder, as I don’t have “time” to dwell on it.

I have a husband. He, way too often, gets the short end of the stick because he is an adult and capable of caring for himself. But with all that is required of me, there is very little to give to him, and I often grieve the friendship and intimacy that we could have, should have……..did have and I took for granted? We have a weekly date night (thanks to respite) but often we sit side by side, shell shocked over this life we are living. We attempt to connect, knowing that it won’t be this way forever; but he is my best friend and even though we are married, see each other every day, live together, sleep together….I miss him. And yet, right now, so much else, consumes our time and thoughts and energy.

I have 2 big girls who are becoming incredible women. I grieve the lack of time and energy to spend with them. I am so thrilled that they want to spend spend time with me. But I feel guilty when my initial thought is that I don’t want to spend time with them because I have nothing more to give. And I grieve……I grieve being the mother they need and want. I do my best, but too often, I’m scared that my best is not enough.

I have a 5 year old. And against all the odds, he seems to be neuro-typical……what some might call normal. I’m not sure what normal really is or even if you can actually say that anyone is normal, but he doesn’t have Autism or ADHD and he doesn’t seem to have any glaring learning disabilities, that we are aware of. He struggles a little with some anxiety and has a harder time with transitions (than I’d like). But, he really seems to fit in with what society would consider to be a typical 5 year old. It’s wonderful and bizarre to see him reaching milestones, remembering names, being able to read and identify emotions in himself and in others, being able to sit still and focus….. He could be my little soccer player or join a karate club…….but remember that description above…..I’m exhausted. And feel like I have nothing left to give. And I grieve…..

I desire friendships and relationships, but there is no extra to give. Everything comes at a cost. Sometimes the investment is worth it, sometimes its not….and it’s a huge juggling act to know when, where, why, and how to fit it all in. As a result, unless it’s someone who understands what I’m going through and is willing to be there when I can muster up the energy……friendships are sparse, fleeting and oh so shallow. But if and when you do find those people who get it…….it’s incredible. But then you grieve your inability to have as much time as you’d like. Sometimes, its easier to not know what you’re missing…..

So much of “special needs” parenting has this underlying thread of guilt and sadness woven through it. I might try to fit or blend in. I might try to “do it all”…..but I just can’t. There is simply too much.

And I grieve…..

I don’t think that Perpetual Grief is limited to special needs parenting, it can be brought on by any form of long term trauma like physical or mental illness, divorce, loss, etc……

Once again, my goal in sharing about this, is not because I’m trying to explain how hard my life is or that I’m looking for pity. I know there are others out there who feel this way and I want to let you know that you’re not alone. The journey of Perpetual Grief is not an easy one, but knowing that you’re not alone seems to help. It won’t make it all better, but it helps a little.

I also know that there are those who don’t understand. They don’t understand why I don’t do extra things. Why I always say, “no.” Why I have to weigh and measure how worth it, it’s going to be to do something that seems like it would be fun and exciting. I know that there are those who don’t understand why we won’t alter our schedule to do some fun activity because the “schedule” keeps things balanced and I’m too tired to try to allow for things to become unbalanced. There are those who don’t understand why I’m too tired, when I don’t do anything extra. Grief is a funny thing. You’re not always sad but it’s like a weight that sits heavy on you……and when it’s always around….you’re always tired.

Be kind. Be compassionate. Don’t judge.

Read Part 2 of The Perpetual Grief Series here

Read Part 1 of The Perpetual Grief Series here

The Perpetual Grief Series

I’m not sharing about the concept of continual and on going grief to gain sympathy or pity. But to bring awareness to a state of being that some may have no concept about. My life is not continually sadness and depression. There are SO MANY AMAZING things…..starting with the 6 most amazing people that I love more than life itself.

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But, I am living this life that has been hard and there are aspects of grieving that I never seem to get beyond because certain situations are brought up again and again and again.

Parenting a child (or children) with special needs is an interesting endeavor. There is a certain loss of dreams and ideals that you come up against time and time again.

For many reasons, my 2 older boys – both of which have Autism, ADHD, Learning Disabilites and Anxiety, as well as Sensory Processing Disorder – have never done very well in group activities. Whether its the social aspect, or the inability to focus, the lack of verbal or written output, generalized fear and anxiety; or even the chaos, and sensory input from an organized activity.

We tried to put Jeremy in Karate, and Soccer when he was younger. The karate instructor was positive that he could whip Jeremy into shape…..and eventually asked us to leave when all Jeremy was interested in doing was spinning in circles while laying on the floor. The soccer league was specifically a no rules, just play league and we figured the lack of standing in lines waiting for your turn to do the drills would be amazing for him. We were excited to have him ask to be in net every week, until we realized that the ball almost never made it to the net and that he spent the majority of his time laying in the grass, looking up at the sky and rolling around. We attempted to put Josiah in a parkour class but after getting spoken to by the instructors because he wouldn’t stay in the lines and wait his turn, we removed him from that activity as well.

The only activity that has been somewhat tolerated has been swimming…..and I’m not surprised because my boys spend about 50% of their awake time in the the bath……It’s a sensory heaven…..the perfect temperature, perfect amount of pressure, they can float if they want, still play with lego, and can hide under the water and its so quiet.

Even so, we got notified by the swimming instructor, last week, that maybe Siah would benefit from private lessons as he struggles with listening to the teacher and following the rules. And I grieve….

I see parents all around me putting their kids in different activities and I grieve the loss of normality. I see parents sharing excitedly of how their child is excelling in this activity or that activity. Hear parents talk about how their child got a scholarship to this college or university and while I’m so happy for them and would never begrudge their child’s success…..

I grieve. I grieve because I celebrate differently.

I celebrate days when we have “only 3” meltdowns. I celebrate just getting my children to school……without tears is a banner day. I still haven’t been able to celebrate just dropping off my kindergarten-er and having him run inside happily. I celebrate days where the teacher hasn’t had to talk to me about an issue. I celebrate days where bedtime doesn’t take 3 hours from start to finish. I celebrate my children eating……something……anything……I celebrate when my child uses the bathroom without fear, tears and pain. I celebrate when we can find the “softy pants”.

But I grieve the loss of dreams…..the dream of normalcy…the thoughts and ideals I had of life looking a certain way. Of being able to put my son in soccer. Of having my kids involved in sports or an activity…..of having them excel at something.

And they do excel……just differently.

In the grand scheme of things, I’m raising my children to be kind, compassionate, understanding, aware…… and I think I’m succeeding. But that doesn’t mean that somewhere underneath it all, that a part of me doesn’t feel the loss…..

And I grieve……