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???

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.

Frogs Jump – I am a Work in Progress

I am SOOOOOOOOO excited……like a giddy schoolgirl on Christmas Morning excited.

Frogs Jump Title
Click here to check out the book

Go ahead and click on the first page and it will take you to a preview of my book. It’s still not quite finished. I’ve got work, still, to finish up the cover and what I’d like to consider is my signature End Page……ha!

This process has been incredibly exhilarating and exhausting.

I am loving seeing my dreams come to life. I’ve dreamed about writing books since I was a little girl. I dreamed and dreamed and dreamed and dismissed those dreams as frivolous. Anxiety, Self Condemnation and Judgment told me that I was ridiculous to even think about doing something as silly as writing books; even though I spent hours enthralled within the worlds inside my childhood books.

So, I dismissed those dreams. I pushed them down and tried to ignore the longing to “ignite wonder” in children’s minds. Over the years, I’ve written many little stories and songs….mostly for my children, about my children…..and told and sung them to my children.

Seeing this book unfolding and coming to life……it feels like I am starting to breathe after holding my breath for far too long. You know that moment when you break through the surface of the water after being under for a moment longer than you can actually stand…..

And yet, it’s terrifying and exhausting. I feel like I’m in an epic battle.

I feel determined that anxiety won’t win this battle and yet everything in me wants to go back into hiding. It feels safer there (except that whole drowning thing, doesn’t feel all that great). It’s less vulnerable to just keep things status quo. It’s hard to put yourself out there, especially when there is still a huge part of you that doesn’t really believe that you have anything worth contributing. And it’s those thoughts, that I’m determined to…..to… prevail over.

It often feels too terrifying, too exhausting, too overwhelming……to move forward. And yet, I’m holding on to the life giving moments as well and trusting that I’m ready and able to take these next steps.

I don’t even know what the next steps are….but I’m going to figure that out. I hope you’ll come along for the journey. It’s always better to do things with your friends, than to do them alone.

D-Day

If there was ever a night to allow myself an “out” this would be it.

But as I sit in my bed, listening to some trance music that Jon has playing while he codes, working on a project for a contract that he’s taken “on the side”………I don’t want to give myself the “out”.

It almost seems like that would be “too easy”….let me escape into some dumb show or waste more hours on my phone….which is what I did while waiting for Jeremy to finish counseling, which also happens to be when I locked myself out of the van. Would you like to hear that story? I sure hope you said yes…..

You see, we have two sets of keys for the van….my set which has the key fob attached and Jon’s set which only has a key. I ALWAYS hang my keys up on the key hook close to the front door….that way I ALWAYS know where they are. (The inference here – in case you didn’t catch it, is that keys get lost in our house, but not by me…) The only time I ever “lose my keys” , is when someone else uses them and doesn’t put them on the hook when they walk in the door.

So tonight when I went to take Jeremy to his counseling appointment…they were not on the hook, as it turns out, Geli had inadvertently taken them with her to my sister’s house when she left to go babysit. (She’s driven the van earlier in the day – totally helping me out, I might add.) Not the end of the world, cause I could just use Jon’s, right?

We drove to the appointment, got out of the van and I clicked the latch to auto-lock the doors. I paused briefly for a moment, feeling like something was weird or off; but shrugged it off and carried on. I dropped him off after connecting with his counselor and headed back out to the van….half way across the parking lot, I reached into my pocket for my key fob to unlock the doors and realized that I had Jon’s keys.

………………………….!!!!!!!!!

I panicked briefly, but quickly pulled it together and messaged Jon. While I waited for him to respond, I messaged Gelica. Fortunately, my sister’s house is not too far away from where the counselor is and Geli did in fact have my keys – which is what I had assumed – she dropped them off and YAY! I was no longer locked out, BUT….normally, I would drop a kid off and then go home for half an hour or so before coming back to do pick up…it would have been pointless to leave because I’d get home and then immediately have to turn around and come back.

So I sat in the van and wasted half an hour on my phone. So stupid…….

I’ve shared all of this lovely, ever so intriguing story because really, I’m not sure what to say about the fact that Josiah was officially diagnosed with Autism today.

Photo

It’s not unexpected. We took him to get assessed for Autism because we really did suspect that he was on the Spectrum. Having said that, its one thing to “think” and another to “know”.

Nothing about him changes. Its exactly the same as when Jeremy was diagnosed. Jeremy is Jeremy and always has been. Josiah is Josiah and always has been. Getting the diagnosis gives us common terminology to be able to discuss his particular challenges and strengths with the professionals in his life…like his teachers, for example. It affords us the ability to communicate effectively and to put plans into place to help him succeed. It also allows for funding to help him work through and learn the skills that “normal kids” pick up without being taught.

So, I’m not upset. I’m not devastated. But, it is tough to hear that your child has a neurological deficit that affects his socializing skills and abilities. He will be given lots of extra opportunity to practice and learn skills that may not come naturally, and I have no doubt that he will be a successful young boy, young man and eventually grown man. But it’s still tough to hear that he struggles, that he will struggle and that this is something legitimate. To hear that our concerns are valid…….it’s tough.

I’m still processing and I’m hoping to be able to process through it all a little more, maybe I’ll even have a moment to process some more tomorrow.

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.

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. 🙂