Advocating Hell

Advocating for your child is it’s very own unique level of Hell. The mind games alone are enough to make you walk away and not even try.

I’m trying desperately to help you understand my child and to see that he’s not deliberately trying to be difficult and defiant. While at the exact same time, I want to not lose your support, regardless of the fact that I may be challenging you to step outside of your preconceived understanding. I am desperate to not come across as a helicopter mom, trying to make my child’s life easy. I’m hoping that you “hear and see” me as an expert on my child with valid input and not as an overprotective, un-objective parent. I want recognition that I come as a well versed peer and not to be on the receiving end of some bias towards me or my child.

I view children as wanting to please, as wanting to do their best…and when their behaviour deviates from what we’ve come to expect…..I question, “What is their Behaviour Communicating to us? What are they struggling to verbalize. What are they struggling with?”

Siahs struggling at school. His behaviour is one of escaping into a safe world…..classically autistic. Rather than clamping down on the behaviour, I believe that we need to figure out what he’s struggling with. Once we can help him……he will have energy to once again rise to the level of success, we have previously seen and even surpass it.

Until this situation gets sorted out, I worry tha we are stuck in discomfort.

  • make (someone) feel uneasy, anxious, or embarrassed.

I dislike discomfort but I dislike my child struggling even more.

It’s hell.

We, special needs parents do not enjoy ruffling feathers. We do not enjoy pushing the bubble. We do not enjoy messing up the status quo.

We would give just about anything to just be typical and never need to spreak with you. But we don’t have that option and so we carry on. Please don’t judge us for that.!

Hear us! Really hear what we have to say!

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.

 

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.

Good from Bad (part 2)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Good from Bad

I’m SO ready for this break.  Not that it’s really a break…..what with kids home from school and then this little thing called Christmas.  But this fall has been a busy one and it’s not been easy.  I’m ready to jus step off the crazy train for a moment and just BE with my family.

Today was a tough day for Siah.  Any day that’s off schedule and out of the norm is tough, but this last week of school before winter break has been one filled with assemblies and parties and treats and crafts and singing…..

While that sounds fun, for Josiah, it’s overwhelming.  To make it even worse, his Principal is retiring and today was her last day. He LOVES her and in a lot of ways, she has been his lifeline at the school.  While teachers, friends and classrooms changed, she was always there…..caring for, championing and encouraging him.


He’s mentioned a few things that have made me wonder how much anxiety he was carrying over her retiring, but I think he’s internalized a lot more than he’s let on.  

I’ve brought it up a number of times, to remind him and to allow for opportunity to process.  He understands from a conscious level but I think that he’s been struggling to process the feelings and emotions.

There was an incident at school today and I don’t have all the facts, but I heard another student looking for “Siah’s mom” and when I left the assembly to see why I was needed.  I was informed that they were just going to try and call me because Siah was very upset.  

I found him in the stairwell, clutching the Lego creation that he associates with his Principal and acting quite belligerent.  

I was almost 100% certain that his actions were entirel because he was overwhelmed with feeling and emotion and unable to process those feelings without help. 

He was refusing to go back to the assembly and quite upset that people were “forcing him” to go back.  The part in all this that’s so tough for me, is that this is a little boy who doesn’t quite understand or speak the same social/emotional language that the rest of us Neurotyoical People do.  He looks like he should and some times, he knows enough to fake it…..but really, he’s lost and has no clue.  So here he is and he’s run headfirst into an extreme emotional scenario (a retirement assembly) but add into that, that he feels devastated that she’s leaving and terrified of what the new year/new principal will bring. 

Now demand that that child, who doesn’t understand the language, his feelings or the situation……demand that he face his fear  and do it NOw, in the language that he doesn’t understand.   

He says that someone told him they were really disappointed with him.  That is brutal for a parent to hear.  I don’t know that’s exactly what someone said or if it was inferred.  What I do know is that what Siah received and he felt shamed because of it. 

When I found him in the stairwell, he was so on edge and definitely in fight/flight mode.  He was refusing to go back to the assembly and I knew that there was a bigger issue.  He’s been walking around our house singing “what a wonderful world” for the past 2 weeks….and commenting about how it’s the principals favourite song and that they were going to sing it for her. 

I tried to see if he would come with me but no dice.  Then I asked him if he was sad and feeling upset because the principal was leaving.  At that point, tears started to run down his cheeks.  I asked if I could give him a hug and he put aside the Lego and allowed me to comfort him while the tears fell.  I tried to convince him to come back to the assembly but he was scared and refused.  I told him we could sit in the office but when we got there, it was locked.  So I suggested we sit in the hallway.  He agreed to that.  I pulled him into my lap and talked to him a bit more about how this moment would never come again and that he would be so sad if he couldn’t sing the special song.  We heard them start the song and he agreed to come inside the gym, while holding my hand, if I stood with him.

So we sang with the rest of the students.  I let him keep the Lego creation.  The main issues in my mind were calming him down, haveing him be apart of this very special celebration and recognizing & understanding his emotions while acknowledging that it was ok to feel sad and overwhelmed.  

He told me that he was told he couldn’t have the Lego as fidget and while I understand that it’s neither discrete nor small……it’s definitely tied into today’s bigger issues. 

I may come back and post some more about this more tomorrow but for tonight, I’m going to head to sleep because I’m falling asleep on my phone.

Any thoughts?  Questions? Comments???

I Should Be Used To This By Now

Siah Today
Bear Boy
We have an appointment with Dr. Corina Brown at the Fraser Valley Child Development Center tomorrow morning to have Josiah assessed.

We will most definitely be asking about autism.

We pulled together all the reports we have for him so far…..He’s only 7 and yet, he’s seen a Psychologist at the Infant Mental Health Clinic at BC Childrens, OT’s through school, our Pediatrician……and we wrote our own list highlighting the areas that he struggles with or in…..

4 pages of struggles.

Josiah Issues

(not sure why but to see the page you need to clink on the link and then clink again on the link that opens.)

This journey of parenting special kids is a tough one.

I don’t know if we are going to get a diagnosis of Autism. I’d like to think that we, as parents, know something about our kids and there are SO MANY flags that go up for me when I look at this list and see this sweet kid….but I’m not the psychologist. I don’t make the diagnosis.

I do know that he’s struggling. His teacher knows that he’s struggling, but she doesn’t know how to help him.

Listing out 4 pages of “issues” and “struggles” and “deficits” is tough.

I’ve reduced Josiah to the sum of his faults.

And yet I haven’t………I know that in order to accurately present the challenges to someone, you need to talk about the hard things. The struggles…..the areas that are difficult….and you’d think that I’d be used to this by now. This is the third child that we’ve had assessed and probably the one I’m most prepared for. In every case, you go in and present the areas of greatest struggle. Because you’re not there to talk about the areas that they succeed in. You’re not there to talk about his sweet soul or his gentle, caring nature.

You’re there to talk about all the ways that fighting with his struggles sucks the soul out of you. You’re there to talk about how exhausting it is for both you and him to “live” on a daily basis. You’re there to talk about the incredible amount of effort that is required to stay one step ahead of every thought and breath so that you can avoid the inevitable meltdowns. You’re there to talk about how much effort every day is, in regards to getting dressed, eating, going to school, coming home from school, playing after school, eating after school, doing homework, eating dinner, doing chores, doing the nighttime routine, going to sleep……EVERYTHING!

And you know somewhere in yourself that parenting a child isn’t supposed to be like this….it shouldn’t be THIS MUCH EFFORT….it shouldn’t be something you dread. It shouldn’t be something that requires every ounce of strength you have and then some. There should be some space in your life left for you……….or your husband…..

But there isn’t…..

But, you can handle it….sort of….which makes you question everything you think and especially everything you wrote down. Maybe you are just blowing it out of proportion. Maybe you are making it seem worse than it actually is, and just then……..your child melts down……..and you take a huge breathe and push away the panic that threatens to choke you. You ever so calmly, and with so much more grace than you feel, respond to the situation…….

The second, third, fourth guessing is what does me in…..

I’m taking my 7 year old in for an assessment. He’s already been seen at BC Children’s when he was 5. And we know that there are deficits in his social development. He is a lovely, sweet boy. He is also struggling. This is not just about me. This is about getting him the help that he needs. And if we benefit because he gets that help…..that’s a good thing right?

I should be used to this by now. But I’m not. It’s hard. It’s hard to see your child struggling. It’s hard to face the areas that your child is struggling, head on. It’s hard.

One more day and then it’s all out of our hands………..I just need to keep breathing.

It’s hard.

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.