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.

 

Connection

I posted a picture the other day….


And my thoughts keep returning to this…

We have an appointment on Wednesday to go and talk with someone at the School Board about this most recent incident with Jeremy. 

I haven’t overshared about this situation for a number of reasons.

  • I’m utterly exhausted and traumatized by it all.
  • It requires immense energy to barely hold together a sweet boy who has been traumatized by it all.
  • I alternate between anger, apathy and anguish on an hourly basis. 
  • It’s almost surreal to me except that it altogether , too real.
  • This is a culmination of years of educationally based trauma for Jeremy and us.

My brain keeps hurling words, thoughts and feelings at me and this is my attempt to capture some of those words and make sense of them all so that we can share consisely on Wednesday.

At the very Center of all of this is Jeremy.

My sweet boy.  He struggles immensely as a young boy and that was the one thing that he ALWAYS had going for him.  He was SO sweet and charming.  Couldn’t focus if his life depended on it.  Couldn’t read or write.  Couldn’t decode social situations…..but he was absolutely darling.  That was probably his biggest saving grace. 

For all of his struggles, Jeremy has been desperate to connect…..desperate for relationship.  He hasn’t been very good at it and when he was finally diagnosed at 13 years old, during his second attempt at an assessment, with Autism…..so many things made sense. 

I find it interesting and so very incredibly frustrating that the older he gets, the less patience, support and care, people seem willing to offer.  It’s like they expect him to have “gotten” it (whatever “it” is) and are more likely to judge that he’s just not trying hard enough. 

Let’s break it down extremely succinctly:

On a daily basis, with NO RELIEF, Jeremy deals with:

  • Social/emotional deficits (Autism)
  • Severe Executive Function disorder (ADHD)
  • Faulty sensory perception (sensory processing disorder)
  • Constant worry and stress (Anxiety)
  • A huge discrepancy between his academic abilities and his output (Learning Disabilities)

That’s a HUGE load to be carrying…..and he’s been carrying it for 16 years.  Its an incredible testament to his resiliency that he keeps trying every day.  That he gets up and in spite of his worries, in spite of inaccurate and hurtful judgments, in spite of constant internal and external pressures…he gets dressed, packs his bag, says “bye mom, I love you!” and heads off to school.

On an aside, Jeremy has been looking for a job.  He’s handed out a lot of resumes, but between a “special needs label” and a service dog….his job hunt hasn’t been very successful.  We’ve heard SO many positive comments about how Polite and Courteous he is.  How he is SO respectful and seems incredibly keen to work…..but nothing has translated to actual employment.  

This past week, in the middle of this chaos, Jeremy got a job.  He got a job because someone gave him an opportunity to show them what he is capable of.  The feedback we got, was that he is probably the hardest working person they’ve had.  

THAT……….THAT is who my son is.  He IS hardworking.  He IS responsible.  He IS respectful. He is DESPERATE to please and to succeed.  He WANTS to do his best……not just for you, but because working hard, being respectful, and doing your best are characteristics that we have consistently and tirelessly impressed upon him as critically important to his very being.

Down to his very soul, to the core of who he is…….Jeremy is desperate for connection….for relationship.

If you were to ask me what he wants most in this world…I would say that relationship trumps everything. 

If you were to ask me what he struggles the most with….I would also say relationships.

This is where his disability comes into play…..

Would you get angry or frustrated if a person who was missing a limb couldn’t climb a ladder as fast or as nimbly as someone with complete functioning limbs?

Would you be short tempered with someone who had a cleft palate or was in a wheelchair?

Now I realize that every disability has people who are cruel/uncaring and judgmental…..but that’s not what I’m referencing here.

How about someone who is blind…….but you didn’t realize they were blind?  You may be frustrated that they weren’t as fast and nimble at everything but as soon as you realize they are “differently abled”……more often than not, we have an “AHA!” moment and our compassion increases.

How often do we see a child having a temper tantrum in a public place and judge?

Or is our first thought, “oh I wonder what’s stressed that sweet little one to their breaking point?”

How often do we hear that a child in our child’s classroom “freaked out” and they had to clear the room; and judge that that kid is spoiled and gets away with too much?

Or is our first thought, “what perfect storm of physical/mental or emotional triggers overwhelmed him till all of his energy and ability to “hold himself together” was depleted?

Do we judge the behaviours or see the behaviours as communication? 

It doesn’t matter who you read, Stuart Shanker, Ross Greene, Gordon Neufeld, Gabor Mate, Brene Brown or countless others……..CONNECTION is CRITICAL!

We crave connection and acceptance on a very deep level.  Disconnection and rejection have a HUGE impact on humankind. Without connection, we are more easily succumbed to addiction, depression, self harm, etc.  It’s hard to find the strength to carry on when we are alone.  But when we know that we have the love and acceptance of those who care for us……..amazing things happen.  We can shine and grow.  We can reach and exceed our expected potential. 

How many inspirational stories do you hear and read about where “someone believed in me so I believed in myself and accomplished great things? What’s at the core of those stories????? Connection.  We are hard wired for connection. 
 Will you look for moments to connect, this week? Especially with someone who is struggling to connect. Reframe “behaviours” from “a terrible child” to a struggling child and ask Why they are feeling and acting this way and what is instigating the behaviours. 

To see our children as struggling and not as defiant or problematic is the start of an incredible journey towards connection that will benefit you and I and the world.. 

To Be Known and Loved

This week has been a tough one.  One of my boys has been discriminated against because of a lack of understanding of who he is, what his struggles are and what supports he needs.

I’ve been trying to wrap my brain around what I’ve been feeling this week.  This situation could have been avoided had there been more understanding, more inclusion, more compassion, more knowledge, and less selfishness.

If people had taken the time, energy and effort to know my son…..to really know him……they would not have treated him the way that they did.

If they had looked for and discovered his heart and soul….they would not have judged his struggles as defiance or disobedience.

If they had looked for, and discovered his abilities….then his disabilities would have been overshadowed.

If they had looked for and recognized his intense desire for relationship and connection…….they would have been able to see beyond the anxiety and disregulation.

I keep coming back to this idea of “knowing” and of “being known”.  I believe there is a desire in all of us to really, truly be known.  Maybe that thought terrifies us….maybe it excite us…..

I believe that our biggest fear in being truly seen and known, is the fear of being rejected……of not being accepted. That’s what we, all, want…isn’t it?  To be known and to be loved, exactly for who we are. I’m not saying that we should never grow or work on areas of weakness. Growth and Personal Healing are critical, but being loved and accepted for who you are is so important.

I know that this is one of my deepest desires and yet, if I’m completely honest……I’m terrified that if you truly knew me, that you’d reject me.

I don’t know why I think that.

I don’t think I’m a bad person.  I try to be authentic, open, and honest.  If you only know me online, I believe that I’m the same person in real life.  I can be funny.  I can be serious.  I try to live with compassion and not judge.  I want to exemplify love in my words and my actions. I don’t shy away from the truth, nor do I want to hurt people with it. I share about the good and the bad. I speak with way too many exclamation marks and periods……..just like I type!!! I find it difficult to speak without my hands, without using facial expressions, and my whole body.

And yet……..

I often feel like I’m too “big”…….too “expressive”…….too “expansive”……

I feel like I’m constantly diminishing my true self because my true self is overwhelming.

I LONG for connection and yet, I’m terrified of it.

And maybe this is why I feel SO strongly for my children…….I see their intense desire for connection.  I see their yearning for relationship.  I see their hunger to be known………and accepted……and cherished.

And yet,  they are big……their personalities can be larger than life.  They can be overwhelming at times. But I SEE them……I KNOW THEM!

I see their hearts.
I see their souls.
I see their goodness.
I see their kindness.
I see their compassion.
I see their innocence.
I see their love.
I see their passion.
I see their zeal.

I KNOW THEM.

And yet, they’ve been hurt….too many times!

They’ve been hurt because people didn’t, couldn’t or wouldn’t look beyond the struggles and disabilities to see them…..to truly KNOW them.

It hurts.
It hurts them.
It hurts me.

I believe that we miss out on some of the most precious treasures in the world, if we dismiss those who may be differently abled.

Maybe in really, truly seeing and accepting others; we too, will be seen and accepted………..what would our world look like then?

 

 

Will you……

Can you imagine waking up in a remote village on an island somewhere? It’s a beautiful place filled with people very similar to yourself in looks. So, it’s not like you stand out as different.
But there are differences…..you don’t really seem to speak the same language as everybody else and you don’t really understand the customs or the social rules of the community. You want to fit in. You want to make friends. You are so lonely but no one seems to understand or accept you in the same way that they understand and accept each other.

You try really hard to communicate, but the harder you try to connect with the people, the more they seem to misunderstand you. They start to talk to each other, about you. Many of the attempts that you make, to connect and communicate, seem to highlight your differences and exacerbate misunderstandings.

Over time, your anxiety about being able to connect grows, which only increases your difficulties in interacting. Eventually, over time, you learn a few phrases, and a few of the customs…..but it’s really not 100% clear to you; and more often than not, the people are confused and/or offended by your attempts at relationship. Even worse, sometimes they mock and ridicule you.

Can you………no, WILL YOU…..?

Will you imagine if this was your reality for your entire life?

Will you imagine how lonely you would feel?

Will you imagine how desperate you would feel……….

For Acceptance

For Connection
For Understanding
For Compassion
For Love

Can you imagine not understanding the social rules of the world?

Can you imagine not being able to read body language or facial expressions?

Can you imagine not understanding “inferences”?

 

Please try to imagine.

Please be accepting of those with differences.

Please gain understanding.

Please have compassion.

Please show love.

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!

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.

A Fairly Regular Week Around Here.

IMG_9079I have these brief moments of clarity. Unfortunately, they are clouded by the fog of chaos and exhaustion that is my life these days.

This past week has been particularly trying and yet, it’s really not any different than any other week around here.

Jeremy had an epic meltdown on Monday night….what that means is that he fought against everything we said and needed and asked him to do starting at 3:30pm. It exploded at 6:30pm, with him huddled in a sobbing, screaming ball on the kitchen floor, begging us to leave him alone and to not touch him. All of this while trying to get the two little boys through their evening chores and headed up to bed……which is it’s own gong show of happiness. We finally got Jer settled enough. He had a great chat with Jon and was able to clearly speak of what was going on for him. It’s just too bad that it took 3 hours of intense energy and chaos to get us to that place.

Tuesday morning (and most every morning) involved a great deal of wrangling to get Josiah to school. He has a lot of anxiety and getting him to school in the mornings involves a tremendous amount of creative thinking and fast talking to movitvate and challenge him to actually make it to school. Tuesday afternoon, I picked Siah up from school and took him, Judah and Xandra to our family Dr. Siah has a few warts on his hands and has been getting them frozen off. He had a massive anxiety attack thinking about getting them frozen off and ended up making himself sick in the waiting room of the Dr.s office. He puked 4 different times and managed to hit the garbage can for 2 of those…..the other 2 required a lot of paper towels and a fair amount of apologizing on my part. I finally promised him that we would just “show” the Dr his warts and that I wouldn’t make him get freezing. After that, he didn’t puke any more and miraculously recovered…..no more puking that evening and he ate well and had no issues. I HATE ANXIETY!!!!!

Wednesday was a quiet day…..I remember thinking how weird and bizarre it was to not have anything crazy going on. Jon did have to work on his second job that evening so I solo parented the bedtime routine and it’s just not as fun as it sounds like it could be.

Thursday was a crazy day. Last week I got a call on Tuesday asking if we could come in to the orthopedic clinic on Thursday for an appt with Dr. Pike – an orthopedic surgeon – who does both pediatric and regular orthopedic care. He specializes in arms, shoulders, wrists, hands……This is the surgeon who will follow Geli into adulthood. I couldn’t make the appt for last Thursday because all the appts are in the afternoon on Thursday’s. This means that I have to arrange pick up from school for Josiah and babysitting for Judah. Fortunately, my mom was able to come this week and watch Judah and pick up Siah. Before my mom got to my house, I managed to tidy the house, do the laundry, clean the kitchen, make a batch of chocolate chip cookies for an after school snack, put together a roast beef for my mom to throw in for dinner, and a quick note with pertinent details for my mom regarding that afternoon.

I was exhausted before even leaving the house. I remember thinking to myself,

“Why don’t I have any help?” That was quickly followed by,
“I try to do it all by myself so that I’m not a bother for anyone.” Which was followed up with,
“But I’m one breath away from breaking…..I can’t do all of this.” And then,
“Why do you try to do it all by yourself?”
“Because I don’t feel that I’m worth……….. bothering people.”

I had a lot more thoughts, but that one hit me pretty hard. I needed to leave for the hospital so we wouldn’t be late and so I filed that thought for later….

Angelica’s appointment was for 1pm and I was really hoping that we’d be quickly in an out before traffic started. There was a surgery that called the dr away just before he came to see us….which means that our quick appointment turned into a 2 hour affair. Which is not bad for “hospital time”.

The long and the short of that appointment, is that Angelica will definitely need surgery. If fact, her shoulder is bad enough that if she was in pain, they’d replace it now. The surgeon said it was “really ugly.” Once again, the comment we keep hearing is, “You’re not in any pain?” It looks bad enough that they expect she should be in a lot more pain than she is. We are so incredibly thankful that she is not in pain. And because she is not in pain, we can put off replacement surgery. She will most likely be looking at both a shoulder replacement and an elbow replacement but it could be a while, yet. This is great news and frustrating, at the same time. Geli has limited mobility in her shoulder and her elbow has a short range of motion. It doesn’t fully extend and won’t fully contract either. She has learned to compensate by reaching with her left arm if something is high above her or by using her right arm, if she needs to extend her arm straight out. It’s still awkward, but we choose to be thankful that she is alive and has both arms to be able to use. We are incredibly thankful that she is not in pain because living with constant physical pain is a horrible, horrible thing to have to do.

We finally headed home…..arriving just in time for me to pick up Jeremy and take him to a counseling appointment. He had his appointment from 5-6pm. I dropped him off, connected with his counselor about a few issues and insights from that week and headed back home to grab a bite to eat before I headed back to pick him up.

His counselor is so kind and thoughtful; and asked how I was doing. Truthfully, I don’t even want to answer that question because I am not doing well. I think I hit breaking point a long time ago and I’m desperately hanging onto the belief that this is a season and it, too, will pass…..I’m just very tired of existing. I’m very tired of all the issues. It’s been a very long time of chaos and conflict; and I’m not so sure I see it ending anytime soon. I gave her a pat answer….and then I answered truthfully and then I cried; then I pulled myself together and took Jeremy home to finish off the evening.

Friday morning brought it’s routine school related challenges although this time, it was Judah who decided to have a flip out. He did not want to go to “school”. He wanted to stay with me. He was clingy and whiney and so very unlike him. He typically fusses about not wanting to go to school…..I think mostly because that’s what Siah does and it must seem like that’s just what you are supposed to do in the mornings……but when we get to school, he goes in and is so happy to see his teachers and friends. He kisses and hugs me and heads off for the day without a second glance. He was SO UPSET. It took about 15 minutes to settle him and I was really confused about why he was doing this…..I even questioned just taking him home with me, because it was so very out of character for him.

Friday afternoon, I picked up Judah from preschool and then picked up Siah. Siah’s desk looks like a recycling bin. It is so full of random bits of paper, junk and garbage. I go in about once a month to scrape his desk out. I put all his pencils and crayons back into his pencil box and stack his duotangs and exercise books. I throw out all the garbage and collect the “treasures” to take them home. He struggles with the “messing with” of his treasures and would just rather live in the chaos – on the best of days – Friday was not one of the best days……..

He melted down in the classroom. Tears, yelling, crying, pleading…..he was anxious that if he brought the 500 origami creations home that they would get destroyed or lost or somehow messed up. He just wanted to leave them at school, but when your collection is shoe box sized and stuffed in your desk…..it just needs to come home. We finally managed to get his desk tidied; the creations in an actual shoe box and him out the door. The real fun started once we got in the van and he refused to put his seat belt on because he “HAD” to take the box of origami back into the school. He screamed at Judah for fussing at him. He screamed at me for everything. So much yelling and pleading; and zero grasp of the reality that it was not going to happen. It took 15 minutes. I have it on video. I’ve been recording “events” for when we go for his assessment at the end of February. It’s so much more than just a normal upset or frustration.

By the time I finally got him calmed down enough and we headed home, I was exhausted…done. We fed the kids frozen pizza (cooked, obviously) and sat and watched videos.

Saturday was the anniversary of Nathaniel’s birth and death and was just a low key – stay at home day. I’m ever so thankful that the kids held themselves mostly together.

This is not really an “out of the ordinary” week. Maybe the fact that I don’t have an actual “incident” to report for Wednesday or Saturday might make it memorable in a positive way….but it all feels less than positive.

And the biggest hit for me this week….bigger than Jeremy’s meltdown, bigger than Judah’s flip out, bigger than imminent surgery, bigger even than Josiah’s epic flipout…..is that fact that I don’t feel worthy.

I feel worth less…..

It’s a pretty crappy feeling.

Why?
Why do I feel like this?
Why do I see myself as worth less than others?
Why?

I don’t know…..but I think I need to figure that out.

What does THAT even mean?

I mentioned that I felt depressed about my life yesterday.

I thought I might take a moment to clarify what exactly that looks like, feels like and means to me.

I ran into someone yesterday who had read yesterday’s post and gently asked me how I was doing. I threw something back at them saying that I was ok and that I was just keeping on, keeping on.

Anxiety speaking here: I’m not sure if they were expecting me to be a huge mess of tears, or if they were thinking that I’d be fragile, or really off, or shaken, or…..maybe they were thinking none of the above and that’s just the anxiety saying that they were “thinking” or “expecting” something.

Regardless, it got me thinking….because I’ve written posts before and had people very cautiously approach me wanting to cancel a get-together that was planned because it might be too much for me, or talking to me as if I couldn’t handle things and they were not wanting to upset my delicate balance.

I’m not saying that I don’t appreciate people’s care and concern……NO! Actually, it’s exactly the opposite. I feel so cared for and supported and loved, when people care enough to step outside of the emotional distance that we, as humans, like to hold ourselves to and try to bridge over into my problems and stresses. It’s HUGE and I’m so grateful.

On one hand, I don’t like to appear weak, on the other hand, I don’t like to be needy, but so often I am both weak and needy……..and I’m recognizing that having a “community” or a “family” that can help to lift you up and carry you when you feel exhausted or worn down, is an incredible, INCREDIBLE thing.

When I share about feeling depressed about my life…….I think what I’m trying to say is that I’m in a tough place and I don’t have a clear vision as to how to move from this difficult place into a better place. I don’t like NOT KNOWING……..I like to have a plan, to be in control, to be working towards a goal, to be able to make things better……

There are somethings in my life that I cannot change. I cannot remove the emotional or physical marks that cancer has left on every person in my family. I cannot remove the anxiety that all 5 of my children seem to deal with in varying degrees, from severe and debilitating to mild. I cannot change the fact that autism is a very real, exhausting and difficult neurological disorder that we deal with, as an entire family, EVERY. SINGLE. DAY. I cannot change the fact that ADHD has impacted 4 of my family members intimately and the trickle down effect of that disorder effects the rest of us.

I can’t “just fix” those things. They are here. They are real. They require HUGE amounts of effort mentally, emotionally, physically, and spiritually. They affect each interpersonal relationship within my immediate family and many outside of my family.

There are moments when “the reality” of my life seems WAY. TOO. REAL…….and my options are to keep on keeping on….or give up.

I cannot give up.

I mean, I could. That was something that my counselor said to me at one point. I could give up. I could check out. I could run away or end up in a hospital somewhere…..unable to “handle” things and that it was my choice to carry on.

I think she was trying to tell me that I “held power” in my situation and that many people did/do check out and that I was doing well, in the fact that I still had the ability to CHOOSE to carry on.

I think I get what she was saying and yet……oh there is always a yet or a but, isn’t there……..I don’t feel that giving up is an option. Yes, somedays, it’s all I can do to just get up and get dressed and put my make up on……

That’s my thing…..my gimmick…..the one thing that signals to me that the show must go on….if I get up and get dressed in real clothes (not pyjama wanna-be’s) and do my hair and make up……..then I accomplish so much more. Very rarely, do I ever, stay in pyjamas and not do my hair and make up. I get “ZILCH” done on those days and I simply cannot afford to not accomplish things……

The 2.5 years of cancer treatment was brutal. It taxed me to my extreme limits as a person, and definitely as a parent. I am still not recovered from the toll that it took on me.

I find that I feel a bit like I am a hollow egg (Humpty Dumpty, if you will). I have a very thin and fragile shell and as long as things don’t shake me or bump me, I exert every bit of energy that I have to hold my broken and cracked self together. One little bump and the precariously balanced pieces start to fall. I fall apart……

Jeremy has a bad Autistic day……….BUMP!
Geli has an emotional day relating back to cancer crap………BUMP!
Josiah has an ADHD frustration flip out…….BUMP!
Judah is 3 (enough said)………BUMP!
Xani experiences extreme anxiety for unexplained reasons…….BUMP!

So many bumps……so much energy expended trying to keep all the pieces in place…..so many pieces falling…..so little left at the end of the day.

I can’t make these things go away, and so I must learn how to live and carry on and continue with pieces of myself broken and fallen apart.

Some of it will get better….or at the very least different, with time. Some of it will never go away, but the kids will grow up and learn coping skills. And my hope, my prayer, is that I do a good enough job of training these amazing blessings of mine how to deal with life’s challenges with grace and dignity; and how to keep on keeping on even when you are unsure of how to proceed and what the best course of action is…..

But………

………sometimes, the enormity of my job weighs heavy on me. Sometimes, I’m unsure how to best help these ones I love so dearly. Sometimes, I feel like I don’t have the emotional or physical strength to deal with “even one more issue”(…and there is always “one more issue”). And then I feel discouraged…….

We have had a few BIG BUMPS recently. Ones that I’d love to share, but it’s just not the right time…….and the added pressure and stress weighs very heavy and makes “coping” that much more difficult. And so here is where I am at today……..

I’m dressed. I have my make-up on and my hair done(sorts of, if a messy pony tail counts…). The kids are off to school, except for Geli – who is still feeling sick (Thanks to Xani for bringing home a stinking bug from New York) and Judah. I’m needing to make a list and see what I can actually get done today. I know I have a mountain (probably 8 large loads) of laundry to fold, sort and put away. I know the main floor is a disaster and the kitchen needs to get put right. If I can accomplish any (not all, but ANY……) of that before the kids come home; as well as planning dinner for Angelica’s 17th Birthday (which is today) I will consider today a success. I have LOW standards…..

So, my “feelings of depression” are an exhaustion, a feeling of uncertainty and brief moments of hopelessness, a sense of constant pressure and chaos, an insecurity of my abilities to adequately parent these amazing children who have been presented with striking challenges to overcome……it’s a little bit of acknowledging a desire for some easy days, yet not wanting to stay in a place of discontent with my life, because that helps no one. It’s a tough place. At times it’s a wonderful place…..but right now, it’s mostly a tough place.

It won’t stay that way forever. I know that I’ll feel stronger and stronger again….I always do, but it is tough.

I would encourage you to look around you and encourage each other…..it doesn’t matter whether you are a single parent by choice or by circumstance, or whether you have special needs children or a child with a long term or chronic illness, whether you have a difficult or challenging child(ren) or need to work multiple jobs to make ends meet, whether you or your loved ones struggle with any kind of mental illness or disability, or whether you seem to have a fairly smooth go of things at the moment……

Be Kind.
Be Compassionate.
Be Loving.
Be Encouraging.
Be Understanding.
Be Gracious.
Be Merciful.
Be Caring.

Understand that everyone is doing their best, and while “our bests” may differ depending on our circumstances and experiences and abilities……..be gentle with each other. Your care and support may make the difference in someones life today.

Jeremy Shares on Autism

Jeremy has an INCREDIBLE Behaviour Consultant. We’ve been working with Elizabeth since 2011/2012. I cannot fully express how thankful I am to have her in our lives. She is invaluable as a support person and a resource.

We recently met to discuss progress and struggles in our journey with Autism/ADHD/Anxiety. She mentioned that she was teaching a course out at UFV and would love to have Jeremy come to either share his views on living with Autism or even just to come and audit this one class where she had invited other youth with Autism to share.

Jeremy was interested in sharing about living with Autism and so we accepted.

On Monday night, the anxiety set in and Jeremy had a hard time getting to sleep because he wasn’t sure what to expect or what would be required from him. We looked up a few things online and then I sent him off to bed with the promise that we would work on something for him to say tomorrow during our Homeschool time.

We talked a bit about himself and went through the questions that Elizabeth had sent through and came up with a paper for him to reference if he needed it.

Here is a video of him practicing at home.

We finished up school for the day and headed out to Abbotsford. We found the classroom and met up with the other teens who were also sharing. Jeremy was SO excited to meet other kids that were “Like Him”…..they Jer at UFVtalked and talked and talked. It was great to see him so relaxed and calm. He was just being himself and not “trying” to be normal.

Elizabeth had to cut the teens off….they had immediately launched into a discussion about a computer game……..and herded them into the classroom. They got settled into seats up at the front of the room and Elizabeth spoke for a bit and then invited them to share some.

I videoed some clips of Jeremy sharing. He spoke quite quietly for the first little bit, so you may need to turn your speakers up.

Jeremy was asked to share about his talents.

Sharing his thoughts about finding out that he had autism

Talking about Sensory Overload and Meltdowns

Talking about Friendship and Autism

I recognize that not everyone will want to watch multiple videos of my son talking,and that’s totally ok. I put these up here for anyone who might be interested in seeing my son, at 13 years old, sharing about his experiences with Autism and sharing how he feels about certain aspects of his life.

Moving Forward The Morning After

So I posted last night…..

I was tired and emotional and probably if those two factors had not ganged up on me….I may have filtered myself a bit more or even just made less typos…..maybe….maybe not?!?

I don’t know that this morning brought any new clarity with it.

I woke up with a killer headache……….at 5:30am.

Yah, it’s been a long day already and it’s only noon-ish. Did not get back to sleep after that. BLERGH!!!!

On a side note….It’s gorgeous outside.

That is the view to my right….

and this is my view straight ahead…..

She’s not supposed to be on the couch….but I haven’t exactly kicked her off.

It’s the last day of school before the Christmas Break….and probably my last quiet (ish) day for the next two weeks.

So, I’m taking advantage of it. I’m sitting. The house is a mess, and I made Judah pancakes for lunch. He is currently trolling Netflix….I believe Ninjago is the show of choice at this exact moment.

I’m currently staring at my Christmas Tree trying to figure out what I’m thinking, but again with the 50 million thoughts going in 50 million directions.

I had a few people send me private messages of encouragement and those were so nice to hear.

I wonder if it’s about perspective.

I’m in the middle of it all. From my position, I look around me and I see children who are unique and amazing and challenging in their own fantastic ways. I see the screaming and the bickering and the squabbling and the challenges to get them to do their chores and take care of their responsibilities. I see their shortcomings and I want to work with them to strengthen those areas while at the same time encouraging them in their strengths. I see these amazing individuals with really great hearts even in spite of all the challenges that we’ve faced individually and as a family……. But it’s a constant effort to keep these 5 bodies moving in a forward direction.

We were so isolated over the “cancer years” and before then….doing almost anything with Jeremy required HERCULEAN effort and sometimes it was easier to just not do anything. Again…..very isolating.

It is hard when you’ve had it said to your face that people can’t be friends with you because your child is too difficult. Or to hear from others that you shouldn’t subject your children to people because they are too much effort to have around and be around.

Just typing both of those down….I realize how brutal those two comments are. I mean, I know how brutal they are….I’ve lived though both of those said directly to my face and more. But I can’t imagine saying those things to someone…..EVER!!! I love children. I especially love the challenging kids. The ones that make you think and keep you on your toes. The extremely smart kids that say the most incredible things but require a little more attention and focus……I love the regular kind of kids too, but somehow, the ones that people seem annoyed with or bothered by….the ones that talk and talk and talk and talk and never shut up……I LOVE those kids. I want to go out of my way to make sure that they feel special and included and NEVER EVER a bother or an inconvenience….

I get it. I know how much effort it is. I live it…..EVERY. SINGLE. DAY! Jeremy has not been the easiest child. He requires some effort. Well, he requires a lot amount of effort. So does Josiah in a different way and Judah….well, he’s a 3 year old. What 3 year old doesn’t require some attention and effort. My boys require effort……I know this. I guess, it would just feel really good to feel like others “want” to be with my kids. Do you know what I mean? I think that in spite of their particular challenges or maybe even as a result of them….that my kids……all 5 of them are pretty amazing. I’d love to feel like others felt that too and wanted to spend time with them….not cause they HAD to, but because they WANTED to.

So, to those who have said something…..THANK YOU. Really! I appreciate it more than you may ever know.

I’m not sharing this in the hopes that people will “do” something. I am just trying to unravel some of this mess inside myself. Part of that is dealing with the hurts and wounds that I have or have gotten.

I realize that I’ve been hurt and I definitely have some sore, open wounds when it comes to my kids and how they are perceived and received.

And this OBVIOUSLY colors how I hear people comment on my kids.

So the school wanting to help Siah….turns into….HE’S A PROBLEM…..which I can’t even fathom….cause he’s freaking sweet kid who can read and write and wants to please…….and then I go…WHAT….WHAT do I even do with that….

How could be he a problem…..which, when it comes down to it….that is not even the issue at all.

He is a great kid….who has some quirks and may require “some individualized strategies” to help him succeed and how do we (parents & school) as a collective team help him to achieve success?

So we met, and talked through some things and I think I have a better perspective. I think we are more on the same page than I “felt”.

Which is great.

Not that the whole things doesn’t still stress me out….but the Principal….she’s an amazing lady, encouraged me to trust them and to just “plug my nose and JUMP!”

I believe this school and these people are amazing people…..I believe they truly care about Josiah. I really do believe that they want the best for him. That they want him to succeed. And so…..I jump.

I’m scared.
I’m nervous.
I’m sure I’ll need reassurance again.

But…..

I want to trust.
I want to believe.
I want to be in “community.”

and so….

I carry on…

one step after the other…..hopefully in a forward direction. 🙂