Category: ME

Priorities

“If I’m being honest with you, I could care less what he learns as far as academics or what his grades are.”

With equal parts liberation and hesitation, earlier this week I shared this statement with my child’s teacher, case manager and support staff.

I don’t mean that I don’t want my child to have an education. I don’t mean that I don’t want him to learn.

But….at this time, I care more if he feels safe at school. I care more if he has a desire to learn. I care more that he learn to confidently advocate for himself. I care more that he learn to communicate respectfully. I care more that he learns self awareness and self regulation skills. I care more that he learns to confidently interact with those in authority, and with peers. I care more that he finds his voice. I care more that he believes in himself. I care more that he has empathy for all. I care more that he eats. I care more that his digestive system is functioning smoothly. I care more that he gets enough sleep. I care more that he gets enough exercise.

It’s not that I don’t care about his education. I just have SO MUCH MORE that I care about. There is so much that a typical child would learn by osmosis, by watching and listening and absorbing; those seemingly simple things….they have to be taught to my child. Over and over and over……and so while I may say that I don’t care about academics……what I truly mean is that it’s just not as high on my priority list as all these other things.

I wonder what life would look like if my biggest worries were what grades my kids were getting; or if “grades” were even on my radar.

But that’s not my life and so I don’t dwell on that. Partially because I just don’t have the time or energy to; but also because it doesn’t serve me to hold that ENVY.

It all comes down to priorities. I only have so much energy and I just can’t hold “it all”. So I pick and choose what is most important to me.

Teaching my kids to be loving, respectful, compassionate, hard working and contributing members of society who have mercy and grace for themselves and others…..that’s my goal.

I try to remind myself of that every time I feel caught up in “what we’re NOT doing” or in the fact that we aren’t “typical“.

It all come down to priorities.

*************************

I’d love to hear what your priorities are or what you want them to be or wish they could be. Do you follow societal norms because you want to or because you feel you have to? Would you do something differently, if you felt you had the freedom or power to do what you wanted to?

With my Humanity Faltering….

We took a Mental Health Day, today!

Jude had climbed into bed with us, at some point last night. First thing this morning, He opened his eyes, looked at me and said, “I just can’t go today.”

Like I mentioned yesterday, we have a kids day camp this week. It’s fun. It’s amazing. It’s epic. It’s theme is “Power Up”. They do Fortnite dancing, and crafts and have snacks and an epic water day. It’s AWESOME!

And in the last two days, my kid has used up any and every bit of emotional and mental reserve.

So, I declared today a Mental Health Day and we did nothing taxing; and only things that we wanted to do.

I have pretty firm opinions on parenting. I don’t like to put up with any garbage or judgement from others. It makes me sick when I see children being treated as bad or devious or evil. I do understand that there are some children who have been so hurt that they need extraordinary help and support; but so many children are spoken to as if they aren’t real people.

Real people who have rights, deserve dignity and autonomy. Real people who deserve respect and kindness regardless of whether they are non-compliant, misbehaving or just young.

But for all of my opinions, I’m still human.

I grew up with old school thinking that disrespects children. Thinking that says that I’m the boss and if I’m just tougher or more authoritative or just force a child to do something that they will get over their issue. Their issue, that isn’t legitimate anyway. They’re probably just faking it, in the hopes of getting away with something.

I don’t believe that line of thinking for one second. And yet, within the stress and chaos and exhaustion of parenting high needs kids, there are times that my resolve falters. I question my moral compass. I question my parenting skills. I question my ability to know or think or believe anything.

In that space, I allow the worry, the questions and the self doubt to surround me, for a moment, before I shake them off. Those thoughts don’t fit on me. I can’t wear them with pride, courage or confidence

**********

I believe that children, innately, want to succeed and do well.

I believe that if a child is not succeeding and thriving; that is not because they are intentionally misbehaving. They are struggling.

I believe that children try to do their very best and if we feel that their best is some how “missing a mark” then we must step along side and support them, in ways that are meaningful to them.

I believe that behaviour is communication and as the adults, it’s our job to detect what they, the children, are struggling to put into words and to help them…..not judge, shame or criticize.

I believe that our children should run to us when faced with problems and not try to hide from us, out of shame and guilt. It’s our actions, words and reactions that reinforce those beliefs and actions.

So in this moment of humanity, when I question my ability to parent my child, to help him to be resilient, to help him find his strength and his voice, to help him find his way in this world knowing that he is valued and loved and capable…….I pause.

I remind myself of what I believe and why I believe it.

I remind myself that it’s okay to not be okay.

I remind myself that taking a Mental Health Day is a gift and not a punishment.

I remind myself that I’m teaching my children invaluable life lessons by honouring them, respecting them and teaching them to be in tune with their needs.

I remind myself that this season will not last forever.

With my humanity faltering, but my beliefs unwavering, I carry on; doing the best that I can, in this moment and knowing that it’s okay to not be okay.

It’s okay!

What Can You Recognize?

It’s Summer time and I have memories of VBS in the local churches in our community. I remember sweaty hot rooms and making macaroni art, singing songs and snacks! I remember memorizing verses for stars. I LOVED to win the stars. Not to compete against others but to see just how many I could get. Summer camps both short day camps and overnight camps were a highlight of my summers.

I just picked up my 9 year old from camp after he bolted. He just ran away.

Jude deals with Anxiety and Trauma from living with Siblings with Autism. Life can be very chaotic, unstable and uncertain.

He struggles with doing things that seem like they should be fun; normal “kid” things And as his parent, I feel like I’m constantly balancing accepting where he is at and encouraging him to stretch his wings. I’m constantly balancing his emotional and mental capabilities and trying to encourage growth without wearing him out completely.

As his parent, it’s exhausting. Either I’m doing activities with him (like Grade 3 or Summer Camp) which means that I don’t get anything else done. Or I’m trying to encourage him to participate, which often means I’m hanging around close by; still unable to take care of other responsibilities. Or we stay at home and avoid “outside activities” and I can usually get some of my responsibilities accomplished.

Sometimes, he needs the complete break so he can recharge……like an older rechargeable battery that can only hold so much charge and takes longer to absorb the charge. He wears out easier than typical kids and requires more time to recharge.

Going to a high energy camp with a LOT of kids is exhausting so why do we do it?

It gives him another opportunity to practise and grow and to see how much stronger he is compared to last year.

It’s also SO important to live in community. We were not created to be alone. And even though it may seem easier to do it alone, it’s not. Loneliness is soul crushing. We are built for love and acceptance and interaction.

So even though it’s hard and awkward and too often we feel judged by people who don’t understand or “get it”; we believe in the value of community and so we do our best to connect, in ways that are meaningful for us, and yet don’t overwhelm or wear down us down.

I held back tears when I picked my son up. Tears for how hard it is for him. Tears because I’m exhausted. Tears because of shame. Tears because of guilt.

I told him I was SO excited to see him. And we carry on with our day.

The next time you see a kid bolting, understand that there’s a good chance the child is panicking for some reason.

Realize that they need support, understanding and help.

Recognize that kids do well, when they can.

Recognize that behaviour is communication.

Recognize that when kids are in panic mode they are more likely to “act” than “speak” and it’s ups to us, as adults, to lend our calm and to not add chaos.

Recognize that you can be a part of the solution or you can add to the problem.

Recognize that the child and their parents, most likely, have limited emotional/mental/physical resources in reserve.

Recognize that you can be a life line in both the child’s and the parents life.

Recognize that Shame and Blame help NO ONE!

Recognize that “villages” and “community” are SO desperately needed.

You are Not Alone

I don’t know if it’s the loneliest road but being a parent of a special needs or disabled child is definitely a tough road to travel.

Gratuitous picture of Mac because why not….

I’m not talking about my child’s journey, at this exact moment. I’m talking about my journey as a parent of a disabled child…….multiple children to be exact.

I was talking with another parent this morning. It feels so dishonourable to admit that parenting a special needs child is hard because you are supposed to love and cherish and champion your children.

Which I do!

But I also spend a huge amount of energy advocating on their behalf. Unless you live this life, you really have no concept of what it’s like. This is one reason that I share so openly about our life; so that those who have no clue, can have some clue, if they want, about what it’s like to live with and parent disabled kids.

I also share so that other parents who are going through similar experiences can know that they are not alone. I know this because I have many parents share with me……..”I thought I was alone until I saw your post and then I realized that I’m not alone.”

Too often, we believe that we are the only ones going through this. And it’s not until someone is brave enough to say, “This is what I’m going through and it’s ugly and messy and beautiful and courageous all at the same time.” that we realize that others are on this journey with us and we are not alone.

And that is the beauty of community.

We all need community. We need to know that we are not alone. We need to know that others have walked the paths that we are walking. We need to know that others understand the exhaustion and the frustration and the pride that we feel for and with our children. We need someone to understand that we live within chaos and that there is still beauty within the chaos. That growth still happens within the chaos. That love grows within the chaos. That life continues within the chaos.

This is why I share. This is why I lay my soul open so others can draw strength and courage from the knowledge that they are not alone. That there is a connection within the loneliness and isolation of parenting special needs kids.

We all want to be loved and accepted, not in spite of who we are but because of who we are.

I see you.

I recognize you.

I validate you.

You are worthy of love and acceptance.

You are more than all you “do”.

You are doing your very best and that’s enough, even if it doesn’t feel like it.

YOU are NOT alone!

Running Reflections 5-18-19

I got new shoes. Aren’t they pretty? When I went to Peninsula Runners years ago, the stock for size 10 womens runners was pretty limited. There wasn’t a huge selection and I usually ended up taking whatever they had that fit right. This week, I tried on 5 different pairs in all different colors and chose the ever classy black runners. Ha!

I had a great run yesterday. I kept the same paces for the first half and the second half. Typically I run slower in the second half of my runs. So that was a win. I also ran a little faster and a little further than Thursday. Awesome right! About 3/4’s of the way into the run, I thought to myself,”I’m really doing this. I’m getting stronger. I’m getting faster and I’m not even feeling like a fish out of water gasping for breath. I’m actually DOING this!“

My next immediate thought was, “Obviously, you’re not trying hard enough. You’re not REALLY giving this your all. If you were, you would be exhausted and dying for breath.“

WHAT KIND OF GARBAGE IS THAT!!!!

And WHY would I think that was an okay way to talk to myself?

I can’t fathom the audacity it would take to say that to an adult and I can’t fathom the cruelty it would take to say that to a child. And yet, I’ve talked like that to myself for as long as I can remember. I have no idea why I would talk to myself like that or how I ever received the message that it was okay to talk to myself like that; because it’s not.

And yet we do it all the time. We down play our accomplishments. We deflect praise. We focus on the things we struggle with instead the ways we are improving. I don’t know if its a false humility thing or a fear of pride. But I’m done with it all.

That doesn’t mean that I’m all fixed and wont hear those voices and those words anymore, but what it does mean is that I hear them and recognize them for what they are.

I hear the fear of failure. I hear the fear of rejection. I hear a small voice who is desperate for love, acceptance, validation, success, approval…….

I choose to hear that voice, acknowledge the fear and champion myself anyway.

Because today, I know that…
– I am stronger.
– I am healthier.
– I am getting faster and going further
– I am amazing.
– I AM ACTUALLY DOING THIS!

Oh The Journey

I mentioned previously that I’ve had an on-again/off-again relationship with running since I was a teenager.

Over the years, I have spent way more time in the “off-again” than I ever have in the “on-again” aspect of running.


I’ve also had self esteem issues, body issues, worth issues……let’s just leave it at “I have a lot of issues and my therapist need never worry about a lack of issues to work on.“


The last time I spent any amount of time running was in 2013. We were on the tail end of the “Cancer Years” and I’d just had a miscarriage for a completely unplanned pregnancy. This happened shortly after I was diagnosed with Anxiety and started on meds. The meds I was on were not optimal for early fetal development and so I quit……cold turkey.


I was in rough shape, physically, mentally, emotionally. I was in really rough shape. In an effort to run away from my problems or maybe to run towards my feelings……I started running “again”.


It was HELL.


I had no reserves to bring with me and while the running provided me with some short term endorphins. It just couldn’t sustain it.


Fast forward to 2017…..that was a year of trauma. It felt like all of my kids had HUGE issues all at the same time and I was drowning under the weight of it all.


My only instinct was to survive. I made it through 2017 and 2018. I have a lot of clarity now about the pressures we place on ourselves and how unkind we are to ourselves. But those are posts for another day.


At the end of January of 2019 – this wasn’t a New Years Resolution– I was in rough shape. I’d been extremely sedentary. I was crazy busy but a large part of my life was sitting. I didn’t exercise and it felt like my heart was going nuts. It would race and slow down and skip beats and basically just make me feel horrible and totally paranoid.


I decided to start walking. At first, a slow walk for a short period of time destroyed me. I was so frustrated because I knew where I had been and this was not even half of what I had been capable of doing. But I was determined to get healthier; so I kept going. I tried to walk at least every other day. It was slow going but I started to see improvement.


I wasn’t as sore after I walked.
I wasn’t as out of breath after I walked.
My heart rate wasn’t through the roof and it was steadily lowering.
I was able to walk faster and for longer distances.


One day in March, I decided to run for a moment and just like that, I felt like I was back at the end of January, just about dying from the effort of it all.


I wish I written down my thoughts from the beginning of the year until now because it’s been quite a journey. But I’d rather start now, and be able to look back in a year and be so excited at the progress.


I want to lose weight because I’m larger than what I should be for optimal health. BUT health is my goal…..not skinny. I ran for 20 mins without stopping on Tuesday. Okay! I was slow as a turtle but you try schlepping 225lbs around for 20 mins and report back.


I ran again today. I have these delusions that I’m going to be able to just break my previous distance and time easily. Uh ya…..that’s not my reality.

While I did go a little further today, a little faster……it was minuscule compared to what my goal is.


I was talking down to myself and feeling bummed out and then I said to myself.


“This is a win. You went for a run. You were a little bit faster and you went a little bit further but regardless, you did it! And that’s a huge win.”


I’m trying!


I’m trying to be gracious with myself. I’m trying to change the way I talk to myself and about myself. I would never talk to anyone or about anyone the way that I do to myself. It’s just not cool and I’m working on loving and championing myself; because I’m worth it.


You know, I never thought that signing up for a race would make a difference BUT….having a goal makes a HUGE difference. Why would I think I was any different than anyone else? Goals are amazing and incredible to have.


Knowing that I have the race, pushes me to stay consistent with my practice. It pushes me out of my comfort zone, in an effort to achieve more. It forces me to dream and plan and hope for what I want. It requires me to be accountable not out of shame but out of determination.


When the voices of fear whisper “What if you fail?“


I respond, “There is no failure; only a beginning.“

Wins and Shows….Hit me up, Please!

Jon left this morning for a week in Mississippi and New Orleans. A! WEEK!


I have a few too many things to juggle this weekend and I’m trying desperately to make a list but I’m dealing with some serious brain fog and it has me feeling like I’m swimming in Jello.

On top of that, I’ve recently added running into my “walking” routine and today my knee hurts. Epic!

So to sum it up – many thoughts in brain, brain foggy, knee hurts, kids are lunatics because routines off and I just want to go to bed!

Awesome, hey?

At some point, I’ll actually get it all sorted out.

In the win column for today, I cleaned the kitchen.

I have very low standards people!

I’d love to hear what your “wins” for today are! Drop me a comment.

ps. Show suggestions to watch so I don’t watch “our shows” while Jon’s gone. We have amazon prime video, and Netflix. What are your favs?

Navigating Educational Trauma as a Parent

Like anything in life there are sides to every story…..often multiple sides.

My post about Parenting Trauma within the Educational System seemed to hit a chord with many and I believe its a huge opportunity for conversation.

Within the Education System we have:
– kids who are traumatized
– parents who are traumatized
– educators, administrators and support staff who are traumatized

There’s a lot of trauma.

And……no ones trauma outweighs another. Every trauma is valid and some how we have to figure out a way to navigate a system filled with traumatized people, who are doing their best; and have the end result be a safe, inclusive space for all to grow and thrive.

It’s an unfortunate reality that, at any given time, our best may be super messy and awkward. Just like our little ones……some days, their best may be flailing around on a floor screaming. And that “best” is better than lashing out at another person. As humans, we have the opportunity to come along side and support those who are struggling.

Navigating trauma that has been inflicted on your child, is brutal. While there are times that people intentionally inflict trauma on others; I would say that the majority of trauma within the education system, is not done purposefully. People don’t go into education with the intent to harm kids.

Regardless of whether its intentional or not, trauma happens and when we know better, we must do better; which is why awareness, and communication are so important.

When trauma is triggered, the brain shuts down and communication and learning are impaired. This is true for kids and for adults.

I’m aware that I hold trauma in my body and mind regarding my children and the Education system. When triggered, I try really hard to pause before I react and to filter what I say and feel; or to find someone who can help me regulate But, there are times when past trauma is triggered and all I do is react.

When trauma is triggered, my brain goes into overdrive. My thoughts immediately start racing. At the same time, everything is a bit of a fog. My only goal is to protect my kids, at any and all cost. Unfortunately, there can be fall out. In moments of fight/flight, I may say things that rational me wouldn’t say. I can feel my heart racing and my body tenses. It’s not a pleasant feeling. I can literally feel the surge of adrenaline washing over me as I prepare to fight or flee.

It feels awful!

And I know that many of you have been there; and many of you are there.

My hope, in posting about this, is to bring awareness. Awareness to parents, awareness to educators, awareness to people who have no clue that this happens. I believe that with awareness, there is opportunity to talk, to communicate more openly; and ultimately, to grow and heal. In order for relationship to build and grow, there has to be communication.

I believe that the “end goal” is that we all want children to grow and learn and be successful.

In the midst of trauma, its easy to loose sight of that. The Fight/Flight instinct kicks in and we go into Battle Mode.

As parents, its beneficial to know if we carry trauma regarding the Education System. We need to know that the trauma taints everything we see, hear, say, experience…….

I’m not saying that there haven’t been “wrongs” committed.

Because there have been “wrongs”. That’s a fact.

But how do we, as humans, work together towards growth and relationship. Especially, when we have a child (or children) in the middle of it all.

How can we communicate respectfully with each other?
How can we hear each other?
How can we come to an agreement with each other?
How can we be partners rather than adversaries?

I know this is a lofty ideal.

I don’t know exactly how to make it happen. I don’t believe that what’s currently happening is working; and I want to be a part of a change.

Here are some of the ways that I hope to affect change.

Awareness – I think speaking about trauma and other issues; and sharing openly and vulnerably is important. I can’t tell you how many people message me saying they “get it” or are going through the same thing. They say that it feels so good to know they’re not alone on this journey. That means the world to me because I know that I’m not alone.

Relationship – I have purposed to build relationship on a peer level with the people in my kids lives. This doesn’t mean that we are “besties”. But, I want them to know me as Patti, the person; and I want to know them as the person they are. Making relationship critical, means that when I’m feeling hurt by something or someone, I have a bigger chance of “pausing” before I say something hurtful to another human. It’s easy to rail against a system……and less easy when you really see the person in front of you.

Respect – If I had to choose one building block to build my life on, it would be respect. I want to act and speak respectfully regardless of how I’m treated. I’m human and fallible but this is one virtue I make every effort to embody. I believe that if you are a respectful person, as a general rule, you will be treated with respect. If you can continue to be respectful, even in the midst of difficulty, you will gain more respect. It’s just the way it works. That doesn’t mean you need to be a doormat and let people walk all over you. Part of living a respectful life is also having self respect and knowing what to accept and what to let go of; but speaking the truth with respect is powerful.

I’m not a policy maker. I’m not a name or organization within the system. I’m just a mom trying to affect change within my realm of influence; and these are just 3 of the ways that I hope to affect change.

I do, wholeheartedly, believe in the ripple effect. We have an opportunity every year to bring awareness, and respect to our relationships with the educators/administrators, parents and support staff that we come in contact with. It’s my hope that awareness, respect and relationship are the legacy that I leave behind, with every grade that my children pass through.

Don’t ever think that you don’t have any influence. We do have influence. Be a force for change. Be a positive influence and see what happens. It may take time, but I believe that it’s worth it.


Grace

I had plans to post every day this month. I knew that Spring Break was the last two weeks of the month and figured that if a practise of gratitude was ever called for, it would be during these two weeks.

While we’ve done okay with the chaos and stress of life, there have definitely been moments and yesterday was probably the toughest day, so far.

It’s nothing crazy. Sometimes, one of my boys gets “stuck” in a certain mindset or fixated on a specific thing; and the other boy gets triggered by the fixation. It means that we get stuck in a loop of triggering and fixation. Trying to help 2 kids to regulate in different ways, for different reasons, while attempting to stay regulated myself, is difficult if not near impossible.

By the end of the day, I was going to try and post and then I looked at the time and it was 12:02am.

Immediately, my brain went into overdrive. I could post and back date it. Or maybe I could post twice but then that wouldn’t be posting every day.

I had about 20 seconds of panic before I said to myself,

“I don’t have to be perfect. It’s not a failure to miss posting for one day. You still have many things to be thankful for. Nothing is wrecked. You don’t owe anyone, anything. You are good enough. It’s okay to just let this one go.”

And so I did!

I rolled over, turned out the light and went to sleep.

In the past, I’d have fixated on this mistake, this error, this imperfection……but I want to live a life where I’m not trapped by perfection. It doesn’t mean that I don’t want to try and do a good job or to try my best. I want to afford myself grace and mercy. I want to live a life where I’m not my enemy, instead I am my champion.

That may sound self-centered but I believe it has more to do with love. I want to love myself and to treat myself with respect. I try to live a life where I treat others with love, compassion, understanding, grace and mercy. I believe that I am worthy of those same things. But in the past, I’ve been too hard on myself. I’ve placed unreal expectations of perfection on myself and berated myself when I couldn’t live up to those expectations.

It’s amazing to see that although old mindsets are still there, that I’m spending less time stuck in them. That I’m able to move beyond self loathing and into grace.

Today I’m thankful for opportunities to grow, to have grace for myself. I’m thankful to see forward movement in an area that I was previous stuck in. So even though yesterday was a tougher day and it resulted in my not posting, I’m still thankful……SO very thankful for grace and mercy and kindness and compassion.

What are you thankful for today?

Wholeness – A Stream of Consciousness

I’ve been struggling recently. Not with being thankful, as that’s a pretty good habit of mine. I’ve been stress eating or just eating garbage or eating my feelings……..regardless of what I want to call it, I feel like I’m out of control.

art by me ~2018

I feel like I’m trapped in a downward spiral of food and I hate it hatred.

That’s an interesting word swap.

I initially said to myself that “I hate it” but I’m wondering if “hatred” is closer to the truth.

It definitely resonates truer, inside of myself.

Except, I don’t hate myself. At least, I don’t think I do.

Do I hate my body? I‘m disgusted by it.

Can I love something that I’m disgusted by? That’s a good question.

Why do I feel disgusted by it?

And, if I’m disgusted by it, but it houses me, it’s a part of me….then am I disgusted with me?

And then we’re back to the hatred.

Interesting……..

I desperately want to make peace with myself. I want to stop fighting against anxiety, and my body, and my mind. I want to accept all these flawed pieces of myself as one incredible whole. I want to stop trying to disconnect myself from the parts of me that I feel are unworthy of acceptance and love.

Somehow, I feel this goes back to perfectionism. And yet, factually, I know that’s an unattainable goal. I’ve somehow believed that I need to be perfect to be loved and accepted and that the parts of me,that aren’t perfect, are bad.

I just want to “be” me. I want to love me, all of the parts of me.

Like, my family, is a whole. Made up of different personalities and “pieces”. None of those pieces are less than or bad. They are just different and each adds their own beauty and uniqueness to the world. Some of them struggle more than other and there are challenges but I don’t consider any of them bad, or less than perfect, or disgusting. Each is just a beautiful part of the whole.

So, how do I get there with myself. How do I recognize and see and love all the pieces of myself as valuable and intrinsic to the whole?

That is a good question and one that I don’t have a clear answer to, at this exact moment; but I believe that I’ll get there.

Today, I’m thankful for the opportunity to grow and heal. I’m thankful for self-reflection. I’m so incredibly thankful for counseling and therapy. I’m thankful for the freedom that comes when you turn towards the things that scare you and you realize that it’s okay. You’re okay. I’m thankful to be on a journey towards wholeness. I’m thankful for every step on this journey…..even the hard ones.