Are we listening?

It was almost a decade ago.

She sat in her chair in a small room at BC Children’s Hospital ADHD clinic and calmly and quietly spoke to my child as if he knew and understood himself.

As if he, this frantic, frenetic child who couldn’t seem to slow down enough to eat or sleep or play appropriately or articulate well, could communicate the mysteries of his mind.

I don’t remember exactly what she asked or what he said. What I do remember is thinking to myself,

She sees HIM. She really SEES him and in truly SEEING HIM; she’s giving him the opportunity to speak and to share from a space of being KNOWN. And in being seen and known, he has the permission and confidence to speak and be heard.”

This one moment is one of the many “pivotal” moments of my journey through parenting.

I remember the awareness hitting me so hard and fast that it was almost a physical impact.

My child, who I thought was an impressionable, immature being – a chaotic, unsleeping, hyper, frustrated, frustrating, exhausted and exhausting person……

I was shocked to find out that even at 10 years old, my child had insight, wisdom and knowledge of what he was feeling, dealing with and going through AND he could communicate that with us , even though it seemed he was only reactionary and impulsive.

I remember him sharing something profound about the way his brain worked, how his body and mind felt; and what he wished he could change.

I remember looking at the Dr incredulously while she carefully wrote down a few notes and thanked him for his input. She had a few suggestions for him and us. She spoke to him like his thoughts really mattered. Like he was “the patient”. Like he had some say over his life.

She wasn’t ever patronizing. I truly believe she saw and heard her patients and really believed them and cared about their input.

This moment changed my life forever. Jeremy was 10 years old when we met Dr. Jokhani and I am forever grateful for her care and support of him; but the impact of this encounter radically changed my understanding of how we interact with our kids.

Too often, we think or assume for them. We assign them thoughts or words based on what we see. But what we see, what they feel, what they perceive, what they know and if they have suggestions, desires or wants gets laid aside.

I’ve been asked how it is that my kids seem so self aware and insightful. How I’ve taught them to be able to share so eloquently? Is there something special about them?

The reality is that I’ve not taught them anything except maybe to trust themselves. Too often what we need to do is JUST ASK and then WAIT! We need to really listen to what they say. Listen to truly understand.

As an example, when Jeremy was asked to share what it felt like inside of his brain when he was at school; he explained that it felt like his brain was moving so fast that he couldn’t catch any of his thoughts. It felt like everything was buzzing so loud.

But when he took meds……everything got quiet and slower; and he could hold one thought until he wanted to put it down.

It might sound childish and simple, but it’s a brilliant explanation of the ADHD mind both on and off of a stimulant.

Mind you, he did all of this explaining, with his back to us while playing with LEGO.

Our children are going to share like children.

  • Will we stop long enough to ask them questions?
  • Will we listen long enough and with open enough hearts and minds to be able to really hear them?
  • Can we trust them to know themselves?
  • Will be give them opportunity to make a mistake and to teach them that mistakes are just a part of learning?
  • Can we give them the safe spaces to practice communication and advocacy?
  • Will we allow and champion opportunities to practise this skill?

I believe that we, as a society, win when we teach our kids self awareness. That we win when we teach our kids to self advocate. That we win when our kids believe that they have a voice worth listening to – when they believe that they have value and worth. That we win when our kids believe that they are valuable not in spite of who they are but because of who they are.

I’ve seen this play out hundreds of times with my younger sons…..starting at early as 3-4 years old.

Our kids are never too early to be heard, seen and known and loved.

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

I’d love to hear about a “pivotal” parenting moment for you?

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.

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.

RelationshipI 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.

RespectIf 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.


Parenting PTSD, the Educational Version

I recently received an email that sent me into an absolute tailspin.

I’ve just realized that with all the info blacked out, this email could be for any one of them, because all 3 of my boys have the same initials. All 3 have IEP’s and “school teams”.

Do you see anything wrong or even remotely threatening or negative about this email?

Nope! Neither do I and I asked for a meeting. Regardless, as I lay in bed, my heart started to race and the thoughts in my head sped out of control.?

What if they are upset with my child?
What if they are upset with me?
What if they are going to tell me that it’s too much effort to support my child?
What if they chalk his issues up to bad parenting instead of trauma?
What if they judge me?
What if they are tired of trying?
What if they put it all back on me to solve and fix?

And the thoughts spiral out of control until I’m choking back the tears and barely holding myself together.?

{I know that these are “what if’s….” and I really don’t want to live in the world of “what if’s….” because….what if it all goes amazingly well? And really what does it matter if someone thinks poorly of my child. I know the truth. But truth doesn’t always vanquish the trauma…..at least not right away.}

This is Parenting PTSD, the Educational version.In the past, I’ve had administrators and teachers say those things about my child. I’ve heard those things said to me, said about my child, and said when it was presumed that I wasn’t listening. To hear those things, destroys a piece of your heart, mind and soul. It breaks your ability to trust, to really even hear at all, let alone with an open heart and soul.

It is devastating to hear that people feel your child is too difficult, too much effort, or just not worth the effort.

While I know that currently, we have people on our teams who actually care for my boys, that past wounding, that TRAUMA is still there. It’s runs deep and it excruciatingly painful.

As a parent of a child with extra needs, you are already soul crushingly weary but usually with no real option or opportunity to rest. You are almost always in fight or flight mode. If for some blessed reason you aren’t there, it only takes one second to be activated …..sometimes when it’s not even necessary.

I’m extra exhausted right now and pretty close to the edge of tears, most of the time.

I’m not alone in this, either. There are thousands of parents, with kids who have challenges, who feel traumatized from dealing with the people within the education system.

We are desperate for people to truly see our children for the wonders that they are. We are desperate for someone to share all the good and amazing things that they see about our children. We are desperate for people to look beyond the challenging behaviour, to see what our children are saying, to listen and really hear their hearts. To champion them into becoming all they they can be and even more.

We are desperate for people to see our children as human beings; and as valuable, worthy and important as the typical kids.

On our end, it takes the courage of showing up and being there even when you don’t know if it will make a difference or if you’ll get hurt again. It takes vulnerability to share your hurts, your ideas, your successes and your failures.

If you work within the education system, know that you have parents and children who are incredibly triggered right now.

show love,
show compassion,
show mercy,
show grace,
show acceptance.

Invest in relationship.
Foster communication.
Build trust.
Be Respectful.
Be a life line.

And the benefits will be innumerable.

But recognize that there is Trauma and it’s not going anywhere soon.

Be a part of the solution, not the problem.

Facing It Head On

I’m having a hard time settling down tonight.

We had an appointment today regarding one of our kids. This is not our first time having an appointment like this but I don’t think they get any easier.

As parents, we want to see the best in our kids. We talk to other parents about their achievements. A typical parent may brag about their child being on the honour roll or a sports club their child was invited to be a part of. They may share about the recognition their child received in Cadets or Guides.

Special needs parents want to share about the wonders of our children, too. But our pride may be in the fact that our child spoke at 8 years old, or learned to tie their shoe laces at 14, or shared a beloved and sacred item with a sibling. We are ecstatic (and often terrified) when they get invited to a birthday party or for a play date .

Would you even consider bragging that your child got invited to a birthday party or for a play date? It’s ok if that would never cross your mind, it just means that we function in different circles, on this great earth of ours.

Here’s something else that’s different…..

Parents of typical kids will probably never experience this situation, and if that is you, count yourself blessed. It’s a special kind of hell to go to an appointment and speak and share about all the ways your child is missing the mark. To spend a couple of hours talking “down” about your child. To fill in form, after form, after form, about all the things your child can’t do, and specifically doesn’t do, well.

You almost have to disassociate from yourself to do this. But you MUST do this, in order to get your child the supports they need.

So you do it, regardless of the fact that it goes against every parental instinct to cherish and protect. You dig out all the dirt and ugliness; and you lay it out there for all to see.

It’s hard because it’s not like you don’t know that there are things your child struggles with, but when you put it all together in one pile, at one time…..it’s overwhelming; and frankly, soul crushing.

That pile of crap in that picture up above……it’s all the stuff I swept out from under my couch. Some of it is garbage. Some of it is useful. Some is necessary. Some was misplaced.

It’s easier to know it’s there; but to only focus on what’s in front of you. If the room looks okay, then it’s good, right?

Its when you sweep it all out into the open that you are faced with a challenge. You can start sorting and do the work and effort that’s required to place things in order. You can throw it all out. Or You can sweep it back under.

You can’t throw “this situation” out or throw “this” away; and ignoring it doesn’t work out well for anyone. There really is only one appropriate option and that’s to put in the time and effort and to “sort things out”. As a parent of special needs children, those are two things that I have the smallest reserves of……time and energy!

But I will get up tomorrow and try to figure out what the next steps are because that is what you do when you love someone with all your heart and soul. When your goal is to help them succeed and be the very best “them” that they can be; you do whatever you can do.

If you have children with disabilities, you’re either nodding in agreement or horrified at what you may soon be asked to do.

If you don’t have children with disabilities, know that your friends, acquaintances, those parents……..they go through things that are tough. They do things that no parent ever wants to do; and they do it so they can afford their child the best in life. But those parents, they are tired. They are often overwhelmed. They may feel like they’ve betrayed the wonder and beauty of their child, in the name of “support”. The hardest part is that that there are no guarantees. You may not get the supports that are needed and then it feels like it was all for nothing; and that’s REALLY tough.

Parents of typical kids, I’m sharing so you can know…….so you can be aware…..so you can show compassion.

Not pity. Not ever pity.

But awareness, seeking to understand, and compassion are huge gifts that you can give us parents of kids with differences.

Take Aways…….

  • Be aware
  • Seek to understand
  • Have compassion
  • Be kind – Always Be kind!

No Shame

It’s been over 5 years since I started taking meds and my life radically changed for the better.

I grew up with anxiety but I thought that everyone felt like me, thought like me, lived and struggled like me. I had no idea that it wasn’t typical to overthink everything and worry about everything and wonder what everyone thought of you and if they thought you were weird or stupid. I thought it was normal to try to do everything 100% perfectly and then after an event or meeting or get together, to go over everything you said and did and muse about how someone might have interrupted or taken what you said in a negative way; and to totally beat yourself up for just not being good enough.

I thought everyone was really good at life and that I just needed to try harder. I thought I just needed to be more confident or work harder to be perfect so people wouldn’t think I was weird or strange.

I sort of coped. I’d probably say that I survived my childhood and teen years…..even into my married life. And then we had some financial struggles, work issues, church issues, a stillbirth, secondary infertility, more work and financial issues, parenting issues and then we added in a few years of childhood cancer and special needs.

By that point, I had zero reserves left to even survive. I hadn’t slept more than a few broken hours in over 3 years. I was exhausted and SO lonely. I was broken. So very broken.

In the past, I’d had health care professionals ask if I felt I was depressed. Depression never seemed to fit, especially when I looked into it and read up on symptoms. I didn’t feel depressed….but something wasn’t right. I felt like it took every ounce of effort I had to just survive and even then, I was doing a lousy job of it.

In 2012, I was looking into what anxiety was, for someone else, I came across an article and checklist and I could check every single box. I booked an appointment with my Dr, took the list in and said, “I have anxiety. I’ve struggled with this my entire life and had no idea it was an actual thing. I check every box on this list. And this is the first time, “I” understand why I have struggled and what I have struggled with.

I asked for meds and I truly feel that was the beginning of me “actually living” instead of just surviving.

I spent the next year, feeling more and more calm and still within myself. It was unreal to me to feel my thoughts settle and for the anxiety to quiet. I finally felt like I wasn’t “fighting” myself all of time. I had the opportunity to breathe and to replenish and to recover.

Taking meds, understanding anxiety, getting counselling and talking about it have been life changing for me.

I have (with my Dr.) tweaked my doses over the years, sometimes increasing, sometimes decreasing; and sometimes switching things up. Always with the goal of having me be my best self and living my best life.

If you are thriving without meds, awesome; but if you are struggling, don’t ever be ashamed or feel like you are a failure for needing and accepting help.

I still struggle. I still have anxiety. Sometimes it’s brutal; but most of time, I’m doing well.

I may need meds for the rest of my life and I’m okay with that. If it means the difference between enjoying life or barely surviving, I’ll choose enjoying life every time.

I will never be ashamed of needing help, asking for help and accepting help. I hope you won’t be either.

Today, I am so very thankful for this handful of meds. They have changed my life.

What are you thankful for?

BEING

Judah is at school.
I’m kind of in shock.
Let me be clear, I am NOT in school at this exact moment.

I took Hot Lunch to school for Siah, as a treat. Off handedly, I asked if Jude would like to stay with Siah and he agreed.  This afternoon is Art in his class or Games Group with the most amazing EA.  He said he’d like to stay for Art.  He was a little concerned about the 15 minutes of Daily Physical Activity but we’ve worked an arrangement for him and at this exact moment….the plan is that I will pick him and Siah up at the end of the school day.

I left the school almost scared and feeling really weird.  I don’t have my little shadow with me.  I was sure  he was going to come tearing out of the school after me begging to come home and saying that he’s changed his mind.  Nope!

I came home and wandered around, feeling a little lost.  I made lunch for myself and then surveyed my kingdom.  It’s in pretty rough shape.  My first thought was:

“I SHOULD clean this up. I ONLY have a short window of time.”

My second thought was:

“I don’t want to.”

So, I have curled up on the couch, with my laptop, in the middle of my mess.  I’ve put music on and am having a cup of tea.

I feel frantic, like I’m wasting an opportunity to “DO” things.  The list of things I COULD do is way TOO LONG!

The list of things I WANT to do, is also TOO LONG.

What’s more important than DOING ALL THE THINGS, is BEING!

I probably won’t get the opportunity to do much “resting” after I do nothing…..but in doing nothing, I am resting.

I COULD DO all the things but all those things will still be there when I’m done just “BEING.”

So for today, I’m breathing deeply and holding onto this moment.

A Small Dose of Saturday Morning Trauma

I got a call about 10 o’clock this morning. I could hear Siah screaming in the background. Jon hollered at me over the screaming, “I need you to come and get Siah.”

Not even finished my first cup of coffee and hair and make up not done…..I raced out of the house and down the street to our dentists office.

I walked in the door and they ushered me to a back room where I found this.

Good Saturday morning to you too!

Nothing like a spectacular dose of trauma to start the weekend.

It’s dental work. My boys needed fillings. How simple is that? Go in, get it done….BAM!

Not that simple.

I sat in the recovery room with Siah and listened to Judah screaming through 2 closed doors.

It’s hard to think straight when your world feels torn to shreds by trauma. When anxiety overwhelms to the point that nothing makes any sense. When trauma tells you that you are in terrifying danger. When you brain lies to you and it doesn’t matter because you can’t think beyond this exact moment of terror.

Siah was curled in a ball, yelling and screaming at me for letting them hold him down. He was so upset that I couldn’t even touch him or comfort him.

In the end, it’s more traumatizing for us because now that they have settled and the meds have worn off, they don’t even really remember what happened. Yay for the meds actually working.

I say that as sarcastically as I can because I was called there…..without the benefit of mind numbing meds, to witness and experience it all. To be hit and kicked, in fear. To be rejected and not allowed to give comfort.

As soon as he settled some, I traded off with Jon to go and see Judah, who was terrified, mostly because he heard Siah panicking. And being unable to see what was actually happening….he assumes the worse.

Siah actually finished his dental work. Judah wouldn’t let them near him…..even cracked out on meds.

We made it home eventually.

We’ll have to cough up the insane costs to have Judah sedated to actually get the work done.

Anxiety sucks.

Watching someone you love suffer from anxiety is brutal.

Experiencing anxiety is brutal.

Can I encourage you to have compassion for those you know who deal with mental health issues?

I’m gonna get up tomorrow, put make up on and go and sing my heart out. You’d never know what I experienced today by just looking at me…..and I’m not looking for pity.

Compassion and understanding though…..definitely. Especially when my boys are acting out and I have nothing left to give but I dig deep and create energy out of nothing.

But my sharing is not just about me. Be kind and compassionate to those parents and kids you know who struggle…….you have no idea what they really are going through and I guarantee you they won’t share the reality.

It would be too much to handle.

It is too much to handle.

Dear School System…..

To the School System,

This year has been an extremely tough one for our family.

I’ve been a parent in the School System for 15 years, and was a student, myself, for 13 years (K-12).

I had no issues.  I found school to be easy….probably too easy.  I definitely didn’t try hard enough and still got mostly great marks.  Sure, I re-did Math 10 (3rd times the charm, right?) but I didn’t care one bit about sin/cos/tan or graphing.  Never have used it.

I believe that over the past 11 years, my sons (and I) have been repeatedly traumatized by the School System.

I understand that is a weighty sentence, but I fully believe it to be true.

Trauma is described as a deeply disturbing or distressing experience.  It doesn’t have to be a death or violent event for someone to perceive a situation as traumatic.

Complex trauma is:

  • Chronic
  • Begins in early childhood, and
  • Occurs within the child’s primary caregiving system and/or social environment

Typically, complex trauma exposure involves the simultaneous or sequential occurrence of child maltreatment and may include psychological maltreatment, neglect, physical and sexual abuse, and witnessing domestic violence.

Exposure to these initial traumatic experiences, the resulting emotional dysregulation, and the loss of safety, direction, and the ability to detect or respond to danger cues may impact a child’s development over time and can lead to subsequent or repeated trauma exposure in adolescence and adulthood without supports that might buffer the negative effects.

 

I have two sons that have experienced repeated distressing and disturbing experiences within the school system.  They both have a diagnoses of Autism Spectrum Disorder, Anxiety, ADHD and Learning Disabilities.

Cognitively, one son is average and the other is superior…..that also brings in another layer of complexity.

We have fought on behalf of our boys, for the last 11 years.

There has been misunderstanding of their specific disabilities and needs.
There has been mistreatment by well meaning but un-informed teachers.
There has been GROSS misjudgment of stress behaviors.
There has been repeated segregation, alone, in medical rooms.
There has been denial of child specific supports as defined by diagnosis.
There has been brutal bullying with no consequences for the bullies.
There has been denial of access to opportunities because of disability, with no support.

There has been repeated emotional and mental trauma which has also resulted in physical strain on both of my boys.

It doesn’t stop there.

What affects my boys, effects our entire family.  Our family of 7 is precariously balanced on the best of days….Neuro-Diversity, and Mental Health are tough loads to carry.  Throw in any mental and emotional upheaval and there is no balance….we come crashing down.

My boys are resilient in the fact that, they get up every morning full of anxiety for what the day will accost them with.  Every social interaction is fraught with anxiety; and requires that they must decode idioms, expressions and body language.  This “social language”, that we take for granted, is foreign to them; and they struggle with learning it.  Not because they don’t try or  want to understand, but because they have a neurological difference that makes it difficult to do so.

EVERY DAY is filled with stress…..with anxiety……with sensory overload.

They don’t get a break from it.

And yet they carry on.

My boys keep walking into your schools EVERY DAY knowing that at some point they will be mentally, emotionally, or sensorily assaulted.  Maybe not on purpose, but it happens just the same….

If I slam your hand in a car door by accident and then apologize, does it make your fingers any less broken or painful?  No, the trauma is still there.  Imagine how you would feel, if people repeatedly slammed your fingers in doors.

You’d probably end up extremely jumpy and tense; and mistrustful of those around you.  It doesn’t matter how much they seem to like or try to understand you, “survival brain kicks in and reasoning and logic shut down.” In fact, you’d probably not want to go where people and doors are.

But everyday, my boys continue to enter your doors, and try again……it’s insanity, really.  And I feel like I’m perpetuating the insanity….the trauma…. by encouraging them to continue to “go and trust”.

They are so very tired.

And I am so very tired!

  • I am tired of holding them when they come home crying because someone misunderstood their diagnosis and their heart.
  • I am tired of fighting every year to say the same thing and not being heard.
  • I am so very tired of being seen as someone causing conflict or someone on the “other side”.
  • I am exhausted from scraping up a weeping child who has been judged incorrectly as defiant or non-compliant.
  • I am exhausted from dealing with meltdowns as a result of pressures placed on them at school, to live up to “typical” standards.
  • I am so very weary of encouraging my children to go back to their teachers and EA’s to work “issues” out, when I believe that my child is being hurt (however unintentional) as a result of lack of knowledge and understanding.
  • I am angry that I have been fighting for 11 years for people to “see” my children….to see beyond the the stress behaviors and see their heart.
  • I am so exhausted  and traumatized from the past 11 years, that I cannot even fathom continuing to advocate for my children.  I cringe at the very thought of connecting with the schools to advocate on behalf of my boys and yet….. I must advocate for them because I am SO concerned for their mental and emotional well being, in regards to their care and treatment within the school system.

 

Dear School System,

How can we change this?

How can we affect change within our school system, so that children like mine are not traumatized on a daily basis?

How can we affect change within our school system, so that children like mine are recognized for the value they bring?

How can we affect change within our school system, sooner rather than later?

  • Do our children have the right to access a place where they can be encouraged to love to learn?
  • Do our children have the right to have the same opportunities as their “typical” peers?
  • Do our children have the right to access safe places, mentally, emotionally and physically, to learn and grow?

Right now, this is not the case….my children (and many others) are not being taught, trained  and encouraged in safe and meaningful ways, within the School System!

How can we fix this? How can we work together to accomplish this?

ps. It is not my intent to disparage any specific teachers that my sons have or have had.  I feel very strongly about the brokenness of the School system, specifically in regards to special needs children.  I feel that there is a HUGE lack of knowledge, in regards to working with children that are Neuro-Diverse.  I believe that there are a lot of teachers and staff are that are well-intentioned but unfortunately, unknowledgable regarding neuro-diversities.

There is a WEALTH of information available.  I’d strongly suggest Stuart Shanker’s Self Reg as a great starting point….not only to aid with Students but also with Teachers and all School System Staff, in dealing with their own stresses.