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!

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.

Pain, Coping and Recovery

Today is a special day. Five years ago today, my sweet Xandra decided to make a change in her life.

She told us that she wanted to talk to us. We knew she’d been struggling for years with depression and anxiety.

It’s hard not to when your sister was diagnosed with cancer, your baby brother was born, your brothers have autism and you’re unsure how to deal with it all. You don’t know if you should bear the weight of everything because your mom and dad are overwhelmed. You don’t want to burden them any more, but you still have needs.

Xani told us that she’d been cutting for a year. That she’d been using this self-harm as a way to cope and alleviate the emotional/mental stress that she had been feeling. She showed us her arms and her legs. She wanted help to stop cutting and knew she couldn’t do it alone.

I was in shock.

She was so badly wounded. Her physical body was a outward representation of how wounded and how much pain she felt internally.

As a mom, it’s a horrible place to be in. To try to hold it together and be loving and compassionate and understanding.

To offer unconditional love and acceptance to the hurting person in front of you, while at the same time feeling absolute helplessness to know how to move forward.

Wondering how to get your child help, to give your child help.

Feeling terrifying rage at the person who mutilated and hurt your child, all the while knowing that it was YOUR child who did this to themselves. Knowing that they must have felt unimaginable emotional and mental pain to have even considered this as an option.

The dichotomy of emotions was huge.

I’d love to say that we had a well thought out game plan. That we rocked her recovery. But the the truth is……this was Xani’s journey.

She determined that she didn’t like where she at and that something needed to change. She reached out for help. She was open about the pain she had been and was currently experiencing. She recognized and identified the harmful things she was doing to cope with and escape her pain. She chose to walk away from those harmful coping mechanisms. Did she struggle on her road to recovery. Absolutely! But she reached out for relationship and community when she felt tempted to cut. When she felt the pain and stress rising up internally – instead of hiding and coping on her own, she reached out. She brought her feelings out into the open and allowed us to walk with her.

We……..we were there. We were available….to love, to accept, to champion, to talk, to just BE there.

Today, I’m SO VERY thankful.

I’m thankful for so many things. I’m thankful for this incredible woman that I have the honour to call my daughter. I’m thankful for courage and her strength and her vulnerability. I’m thankful to be on this side of this journey. I’m thankful for the perspective that this journey gave me. I’m thankful for the opportunity to love and accept. I’m thankful for the knowledge that we as people experience pain and look for ways to treat the pain and cope; often how we “cope” is in unhealthy ways….but that doesn’t make us bad or unloveable or unworthy; it just makes us human.

We are all worthy of love and acceptance; not in spite of who we are, but because of who we are.

ps. I have Xani’s permission to share about her journey. But I’ve also shared my perspective of it because this is my life, my journey and my perspective.

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?

Living in “Not Enough”

I’ve spent most of this afternoon/evening crying.

Daily PhotosThis sweet kitty came and snuggled me all on his own initiative.

I’m okay…..well, I’m not okay but I’m sure I will be and it’s not the end of the world…..I’m just tired.

Well, I don’t like that either, because I’m not “just” tired.  I’m exhausted.  I’m wasted.  I’m trying…..

I’m trying really, REALLY hard.

I’m trying to hold myself together.
I’m trying to hold my boys toge……………

I edit myself all the time.  I figure that you must be as sick of hearing “all that I have to do” as I am of thinking about it.

And yet, every  time that I hit “POST” someone leaves a comment or sends me a message or tells me later, that they don’t feel alone, or they “get it” a little bit more,or that they had no idea.  All of that….it brings awareness.  It helps to create community.  And community is especially important for our parents/caregivers within the special/high/complex needs community and that’s why I continue to write and overshare.

I know that some people look at me and think that I have it all together.  Ha Ha Ha ha!

I would NEVER claim to have it all together.  I am a hot mess, sometimes presented fairly nicely, with overly done make up and enough hairspray to make my 90s’ self proud. Sometimes I’m rocking the greasy hair, messy bun with yesterday’s yoga pants and baggy shirt, all rounded out with lipstick and shades…….like putting lipstick on a pig, right?

I wish I was perfect…..well, not really but I wish I had a house cleaner and maybe a nanny.

I might be a little more sane, if I had that…..but I don’t and so I do what I can and often…..always…..that’s not enough to be perfect.  Mostly, it’s just not enough.

I struggle with the fact that I may be judged for my children’s inability to self-regulate like lots of kids can.
I struggle with my inability to do everything that I want to do.

I struggle with my inability to do things that I feel others think I should be able to do.

That last comment is a huge issue for me……. I tear up writing it. I tear up re-reading it.  It’s where I’m stopping today……why do I place so much weight on what “people” may think of me…….

Maybe this is why I feel so strongly to advocate and champion for kids with invisible disabilities; and for understanding and compassion for all!

The fact of the matter is…..I am disabled!

Definition of disabled

1 a : impaired or limited by a physical, mental, cognitive, or developmental condition 

I look healthy and for the most part happy and well rounded BUT…

I am limited in my physical and mental abilities.  Not cognitively, although the “brain fog” from stress and exhaustion is a real thing.  I have HUGE amounts of empathy for people who have Executive Function Issues and even Brain Injury because…….I used to be extremely capable of an insane amount of organization and administration. With all the stress and trauma we’ve dealt with over the past decade (its been over a decade), everyday I walk around saying, “Why am I here and what was I going to do?”  I walk around in this “fog” where I can be talking to someone, and suddenly realize that I have no idea what I was talking about…..it’s gone.  That too happens, daily.  Some days its better and some it’s worse.

There are things that I can’t do from an emotional energy standpoint and even from a physical energy standpoint……and its hard…..because I look like I am okay.

And every time, I have to say that “I can’t”… it feels like a punch to the stomach.  I can’t do a school project with my kids. I can’t go on a field trip. I can’t run to the grocery store for a quick pick up. I can’t make that phone call. I can’t type that email. I can’t do that laundry. I can’t clean the way I want to. I can’t…….

Can you imagine?  If you can’t…..call yourself extremely blessed.  I don’t begrudge it of you.  I used to be you.  You are blessed. Please don’t take it for granted.  But Please… do have compassion for those who may not be able to.

If you can imagine……know that I get it.  To some degree, I get it. I get that there are things you are good at and things you wish you could do. I get that there are things you CAN make happen , but it comes at great cost and sacrifice to your (and your family’s) well being. I get that there are things you just CANNOT MAKE HAPPEN.  And I get that it sucks.

If you’re struggling, know that you’re not alone. It’s hard.  Know that it’s okay to have the good days and to celebrate them; and to have the bad days and to hate them. Know that a good morning can turn into a bad afternoon or vice versa; and that every day starts anew with new possibilities.  Know that it’s okay to be filled up with sadness, and even to sit with it for a moment, but that you need to let it go to make room  for something else. Be easy on yourself and extend grace and compassion to yourself.

Judah wondered why I was  crying today and I told him that my heart felt overly full of sadness and crying was helping to pour some of the sadness out.  That I was making room for other emotions to come and fill me up.

I think I’ve emptied enough sadness out and I’m going to be careful with myself over the next few days and do things to help fill me up.  Tomorrow is a “Mental Health Day” for me and my littles. I’m looking forward to it.

 

 

 

Who will YOU see?

I cannot be happy enough to see 2017 close it’s doors.

I had thoughts that this year would look so much different. And while this year and its events have kicked my butt…..there were good things about it, I’m pretty sure.

I can’t think of too many at the moment, because of the severe brain fog due to mental exhaustion and stress.

Between the spring and the issues surrounding Jeremy and the High School; between the summer and all the fighting between my boys; between this fall and finding out that my baby has perceived trauma due to being a sibling of autistic brothers, to school refusal, complete out-of-your-senses panic, and therapy……lots of therapy; between helping one child feel safe within his school and with his teachers to advocating that they see the person and his strengths and not get sidelined by the “side effects” of his disability; from moving my babies into their own home; and doing so much more with my own creative endeavours, than I ever thought possible……..it’s been too much.

Many things and many people have been set aside as I try to survive. There is no thought of thriving and I’m eternally grateful for the opportunity to escape into art and creativity……because that small part of my life means that I’m not lost.

I’m not lost to chaos.

I’m not lost to meltdowns.

I’m not lost to advocating.

I’m not lost to lack of knowledge or understanding.

I’m not lost to special needs or trauma.

I’m still me.

But me…….
She…….
I…..
I am exhausted.
I am barely treading water.
I am in a tough space.

I like to say that seasons change and I know they do. I believe that I have more strength than I realize. I believe that I am capable of handling a whole lot……I know this, because I’ve had to.

And yet, I’ve never been more closer to giving up.

I’ve NEVER been this weary.
I’ve never wanted this badly to run away from everything and everyone and never be found again.
My sense of responsibility has been taken to the end of itself.

To. The. End.

Physically, I’m tense, like muscles in knots, headaches and migraine, tense. I can’t sleep. I’m exhausted. I can’t focus. I have to write lists to accomplish anything. And even then, I stare at my list with a blank sense of uncomprehension. I see people doing human things. Regular things, like going for coffee or a walk or popping out to the store to pick something up…..and I can’t even fathom how that’s a possibility for them. It’s Herculean effort to exist.

Do you understand?

Can you even comprehend?

I share because I know I’m not alone. I know there are others out there who feel like this and blindly and stumbling keep putting one foot in front of the other, not knowing how but knowing they have to. Doing everything in their power to reserve the strength that they don’t have while pretending, as best the can, to deceive themselves into carrying on because there is no other choice.

——-

I am walking away.
I’m taking my crazy with me and we are all running away. We will put our toes in the sand. Pray for sleep and regulation. And hope that we can recharge in the sunshine and the water.

——–

But there are many, like me, done. Tired. Exhausted. Worn out.

Look for them.
Find them.
Love on them.
Let them know you see them.
Let them know you love them regardless of their ability to give back.
Let them know in a tangible way, that you see them – that you care.

———–

Some ideas: (in no particular order)

– Take a meal
– Give a Gift Certificate
– Drop off a coffee and donut
– or a bottle of wine
– take a kid out for a treat
– clean a bathroom
– clean out their vehicle
– give flowers
– offer to watch kids
– do a 10 minute tidy
– ask how they are doing, really listen and be okay with a hard reply
– connect and say hi (by text or email) and don’t expect a reply
– send a card to say you’re thinking of them
– learn about what they are dealing with (autism,ABI, ADHD, TBI,
DS, FASD, trauma, divorce, addiction, mental health, cancer, grief, etc)

There are so many ways to connect without putting more pressure on ones who are already tapped so far beyond what’s emotionally possible.

This holiday season, I’d love to challenge you to “see” someone, to hold their challenges with respect and reverence, and to be a support in ways that are meaningful to them.

It may mean being okay with the messiness (emotional, mental, physical and/or spiritual) that often accompanies our lives.

But it will be worth it! I promise!

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.

 

Assimilation……

I went to another counseling session this morning….and then I came home, ate lunch and crawled into bed until I had to pick up the boys from school.

I’m currently chatting with some friends on the Facebook messenger app….I’m having such a hard time focusing on this and yet, I want to be able to write it down because when I do…..I feel like I process through it and assimilate the info, so much better than when I kind of ignore it and carry on.

PhotoI feel like I’ve been fighting myself. On one hand, I think I’m good at certain things…..but on the other hand, I don’t really believe it. For example, I believe I am beautiful; but instead of just believing it and it being a non-factor…..I’m constantly needing to “be” perfect…even though I’m no where near perfect. It’s always something I’m reaching for or trying to attain. And if someone says anything to me….I honestly believe that they are just being nice…because somewhere inside of me, I don’t really believe I’m beautiful…..but I do….???

I think I can sing well, and yet…I don’t really believe it, because if I really was good, then wouldn’t I have actually “done” something with it. And yes, I can carry a tune, but so many are so much better than me, and I’m not really that good……..I’m just…adequate.

So, in counseling today, I managed to connect with a much younger me…from about when I was 6….and she quite honestly believes that shes bad……dirty and disgusting and bad…..and I don’t know why. She believes that if anyone really truly saw who she was that they would reject her……..and that just so much resonates with how I feel.

It’s weird. It’s weird to hear yourself say things like……I see these kids. These kids that others see as “bad” and I see beyond the “actions” and “issues” to the heart and soul of the kids and I see how special and amazing they are.

It’s so devastating to see that as a young girl, maybe 6, that I felt like if anyone saw the real me that they would reject me, because I was so bad.

I don’t know what happened to make me think that. I don’t know what would have given me that impression, all I know is that for the first time…..something makes sense…….its like something inside of me has held onto something horrid for 30+ years and I can finally recognize that it’s not the adult me feeling like this. Even saying this (or typing it) makes me feel crazy and yet…….it just feels so “right”. I said things today that totally make sense for the first time in 30+ years.

If there is a part of me that was traumatized by something and held onto that trauma and never quite grew up….it could easily be causing a disparity between what I know as an adult and what I felt as a child.

The feelings were so strong….at first I didn’t even want to connect with her.

I’m quite unsettled sharing this, and yet…..I want to. In some ways, if I share it, it becomes more real to me.

I find our minds to be so very, incredibly interesting.

Its so hard to switch from what we know as an adult to what we feel/felt as a child. And yet to recognize that what we felt/observed/experienced is still valid regardless of what the actuality is/was…..

For whatever reason, I felt like I was unworthy of love. I felt disgusting. I felt bad. I felt like, if anyone saw who I really was, then they would reject me. I felt like I had to continue to try to appear perfect, in order for people to accept me. I felt like failure was equivalent with rejection. I’ve continued to feel that in my experiences with people, all through out my life. It sucks.

In a lot of ways, it feels like I can’t trust myself. How do you merge these two “warring” sides of yourself? One side believes that you actually are a nice person worthy of love and acceptance; and at the same time, a part of me truly believes that I’m one slip/one step/one action away from being rejected because I’m so “bad”.

How is a 6 year old “bad”?

I can’t imagine looking at a young child and believing them to be truly evil.
I can’t imagine looking at my young children and rejecting them based on their actions.
I can’t imagine my children feeling so unacceptable and undesirable.

It just about destroys me to think that I felt like this….and yet…..I can’t remember not feeling like this and the feelings today were so intense……

It made me feel so sad for myself.

I hurt so incredibly much for the children that I see who are struggling. My own children, my nieces and nephews, our friends kids……..children at our local school….., at church….

So many of these, I’d venture to say ALL of these, kids just want to be loved and accepted, and they should be….in spite of any actions that people deem inappropriate….Sometimes, I just want to scream at the “adults”. I want to scream and rail at them, “can’t they see that these kids are trying their hardest?” They are doing the very best they can. Children want to do their best. If they are struggling, it’s probably because they don’t know what to do….and helping to teach them what to do (as opposed to focusing on what they are not to do), with love and compassion would go a whole lot further than getting angry with them.

It was a weird appointment, and I realize that I’m a bit all over the place….but it’s been a tough day.

I’m attempting to process through this. I’ll probably have more thoughts on it all, but at least I’ve started….

I’m trying to be ok with being in process….I like to start something and wrap it up and “finish” it…..but I think it needs to be ok to be “in process”….to be “working on things”….to not have to feel like if I don’t finish it right away that it’s useless or worthless….but to realize that I can start working on something and continue to work on it and that it’s ok to not be finished yet…..

hmmmm……..

In Process…….

I had a counseling appointment this morning. While driving there, I tried to “check in” with myself…..to see how I was doing. How I’d been feeling since my last appointment? Less Anxiety, More Anxiety…Whatever…and as I attempted to “connect”…I found myself shutting down.

Whatever I was trying to connect with or process seemed too great a task and it was as if a huge cement lid was slamming down on top of whatever I was trying to connect into…..I guess, myself…

There was a song on the radio that I liked and so rather than fight against myself…I sang along with the song until it was finished and then I tried again……

Quotation-Jeanette-Winterson-time-Meetville-Quotes-8822I knew I had thoughts and feelings and yet…as I reached inside myself…once again…I shut down.

By this point, I was mildly frustrated and so I tried again…and there was nothing. Brief lines from popular songs flashed through my mind, filling it with meaningless drivel;but I couldn’’ seem to grasp a hold of one concrete, valid thought.

I became aware that this is something I do…..often.

I have so much to think through and so much to deal with and it’s been SO LONG that I’ve been living in a state of heightened stress…at some point I shut down in an effort to not “break” and now it feels like this coping mechanism has crippled me.

It’s possible that my life experiences may also have “broken me”, were I to have fully embraced them all as they came……but I didn’t…

And now…….

I walked into the counselors office and sat down; and chatted about trivial things not pertaining to the matter at hand and then I brought it up.

“I shut down. Often. And I don’t like it.”

It’s kind of like the whole “building walls” analogy…..You get hurt by people, so you start to build walls to protect yourself; and eventually you end up alone inside your great castle, and that loneliness hurts even worse than the possibility of hurt from letting people in…..

I shut down emotionally because my experiences were too great a pain to bear.
I’ve experienced too many intensely hurtful things.
Shutting down has become instinctive and not a choice.
Now, anytime I attempt to work through something that feels the slightest bit “intense”, even if it would be a positive thing…..I shut down and cannot think straight enough to make sense out of any of it.

It’s frustrating.

It feels shameful because it’s something I “should” be able to do.

I laughed when I said that, because I know it’s a fault of mine…..this belief that I should be able to do anything and everything……that I should be in control at all times….that I should be capable to handle anything and everything that comes my way, with no signs of weakness…..How’s that for holding myself to impossible standards?

I feel angry because I don’t like feeling powerless and out of control.

It takes me back to the days that Nathaniel died and was born.

How do you process something like that? How do you carry a baby for 25 weeks; and plan and dream about and love the being that you are growing inside your very soul….how do you cope with having that piece of yourself taken from you? How do you walk away from your heart? How do you deny everything that your gut is saying to you to leave him when you know they will put his body into a cold freezer and yet you must just walk away and leave him there…..where no one loves him….where no once will or can care for him…..

You don’t….you shut down because those thoughts will destroy you…….

d6a09ad607c4839d81b7a8de71185190

My baby died. I can’t even fathom it, and yet I lived through it….I think those are the wrong words, though. I carried on. I kept on going. I shut down and gave birth to a beautiful baby boy. A little boy who was the perfect size for his age. A little boy that they could not find anything wrong with. There was no reason that we know of….he was not sick or broken. Just dead.

Even writing this I seem to flash in and out of these feelings of grief. Shut it down….feel……it’s too much….It’s TOO MUCH…..so many tears….so much sorrow held for so many years….He would have been 11 years old this year.

I held him for such a brief moment. I didn’t know what to do and neither, it seemed, did the hospital. I have so many regrets and so much anger inside.

Why didn’t they ask if our families would like to see him?
Why didn’t we call our families in? It would have been so much more real, then….
Why didn’t I hold him to my chest and sob as if my heart was broken into the million tiny shards that it was?
Why was I so scared that holding him was the wrong thing to do, just because he was dead?
Why didn’t the hospital walk us through more….better….with details….or information……or something?

I can’t have these “why’s” answered…..

I’ve existed, laying these “why’s” down because I knew there were no answers to my questions…..but what I have not realized was that in being “logical” I was dismissing or down playing the validity of my emotions…I was shutting down…..

It’s ok for me to be upset that my baby died.
It’s ok for me to be upset that my baby died without a reason.
It’s ok for me to be angry that we were not “helped” along more by the hospital.
It’s ok for me to feel sad that I didn’t hold Nathaniel and cuddle him as much as I would have liked to.
It’s ok that I feel shameful for not knowing what to do……How could I have known?
It’s ok that I feel so many “regrets” because I can never go back to that moment…..

I walked away from the hospital feeling more alone and broken than I had ever felt before in my life. I remember standing in the elevator wishing that I were dead. Wondering if I was, because it wasn’t possible to simultaneously hurt this bad and yet feel nothing.

I felt dead. But I knew because of how badly it hurt to even breathe, that I was so very alive and that I had kids to take care of and that life had to go on.

We came home to an empty, still house…..mirrored by my own emptiness. We walked upstairs to the main floor and I remember hugging Jon, and crying. I felt so helpless…..so out of control……and so desperate for another baby……a living baby.

When I think back to that time…..there are a few things that I remember “doing”…..I don’t remember “feeling” anything other than desperation for a baby to love, to hold, to fill the empty places inside of me……

Siah was born 3.5, very long, very loss-filled, very traumatizing, years later.

quote_resources-for-recovering-resilienceI don’t know how you make it through an experience like that without shutting down. Obviously….because I didn’t……..

Now how do I move forward….that is my question…….

I don’t want “shutting down” to be the first thing that I do when faced with…..life….

Because I want to “really live” with authenticity and transparency and passion; and not just exist……