Will you……

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

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

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

Can you………no, WILL YOU…..?

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

Will you imagine how lonely you would feel?

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

For Acceptance

For Connection
For Understanding
For Compassion
For Love

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

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

Can you imagine not understanding “inferences”?

 

Please try to imagine.

Please be accepting of those with differences.

Please gain understanding.

Please have compassion.

Please show love.

Don’t Pick Up The Rope

Imagine that you are a child, standing on the edge of a cliff. You look up and on the other side of a deep gorge is another cliff. You look over to the side and there is a rickety looking string bridge. You aren’t certain of its ability to carry you safely across to the other side, and so you refuse to move. All your friends are on the other side and it looks like they might be having a lot of fun. But you refuse! You aren’t really sure how everyone got over there, but that bridge looks unsafe and safety wins out over fun, every time. You decide that you are not going ANYWHERE.

People suggest that you come over to the other side. You want to but……….refuse!
They tell you that you have to come over. You really aren’t sure if it’s safe…….so you continue to refuse.
They start to insist that you come over. That isn’t helping, you feel pressured and uncomfortable…
Voices get louder, more commanding and more demanding. You continue to dig your heels in and refuse to comply.

The harder they pull, the harder you pull…..just trying to remain safe.

 

All of the sudden you realize that people are pulling and forcing you towards the bridge.

You resist.
You yell.
You’re scared.
You scream.
You panic.
You start to thrash and flail.

You do anything to protect yourself from the uncertainty of what’s before you. In a blind panic, and completely incapable of rational and reasonable thought, you bolt. You run. Or conversely, you curl into a ball and cram yourself into the smallest corner available, so that no one will be able to force you into, what you are sure is, an unsafe situation.

How many times have we asked a child to do something and then been frustrated when the situation devolves into anger, defiance, rage or physicality? You don’t really understand because what you’re requesting is not something weird or terrifying. It seems a pretty simple request and yet……..the child is labelled oppositional, non compliant or defiant.

I hate those three words. Very rarely are those accurate adjectives to apply to a child.

I believe that we need to approach children from the viewpoint that they WANT to please and they WANT to succeed. If behaviours arise that appear contrary to them pleasing and succeeding, WE NEED TO PAUSE.

We, as the adults, need to question “What is at the root of the negative behaviours?”

Why this this child feeling anxious?
Why is this child feeling insecure?
Why is this child feeling less than capable?
What is feeling overwhelming to them?
What is feeling uncertain?
What is unclear?
What information are they missing or unsure of?
How can I help?

Going back to our picture at the top of the post…. Here is a different view of that situation.

You are, a child, standing alone on one side of the cliff. You are aware that you are missing out on what seems like fun on the other side. You feel alone, anxious and unsure. You are desperate to feel accepted and safe; and while you wish you could go over, safety wins over fun, every time. You realize that someone is calling your name. They crouch down beside you and ask if you’d like to join the rest of the class on the other side. You aren’t sure how to answer because you are scared. They start to explain what the rest of the kids are doing and it sounds SO fun. It’s too bad that the bridge is the only way over. They explain how the bridge was made and how many pounds it can carry; and that makes you feel a bit better but you’re still not sure you can believe them. They call another kid over, who crosses that scary bridge, and together they show you how two people can cross the bridge. You are still unsure. They tell you that it’s okay and that they will stay with you on this side. That makes you feel a bit better. They share a time when they felt scared and uncertain. You want to join your classmates but you really aren’t sure. You realize that the person isn’t going to force you but will stay with you and that makes you feel a little bit safer and a little bit stronger. You eventually agree to try to cross the bridge even though you still feel scared. It might take you longer, but with acceptance and relationship you can accomplish amazing things.
Instead of calling for the child to take action and then labeling them as non-compliant, what if we made the effort to understand and accept?

What if we stopped pulling on the children, which is only increasing their anxiety?
What if we didn’t “pick up the rope” in the first place?
What if we joined them, and validated their feelings and emotions without having to fix or change them?
What if we made sure they knew and understood the facts and information? 
What if we found out what they were fearful of?
What if we explained how the bridge was made and why it is, in fact, safe to cross?
What if we explained exactly what was happening on the other side?
What if we told the child that we would cross with them?
What if we gave them the power to make the decision and until they did, we sat with them and gave them the opportunity to feel safe and accepted?
What if we built relationship instead of building conflict, opposition and disconnection?
What if we allowed the time and space for a child to feel safe?

I believe that this scenario plays out, at some point, with all children but that it’s especially true for children with anxiety, special/high needs and neuro-diversities.

It’s important to recognize that the majority of opposition and non-compliance stems from anxiety and insecurity.; and that we have the ability to make a difference in the way we view and approach children. We need to look beyond the bravado and indignancies of anxiety and insecurities; and see the cries for help.

We need to build trust and relationship instead of building conflict and disconnection. We need to join with them, where they are at; and when we have built a solid relationship founded on trust, we will go so much further than we, or they, could dream or imagine.

Don’t pick up the rope!

Clinging and Hope

I cling to the edge of the cliff.  The fingers of Darkness and Despair curl around my ankles, weighing me down.  The continual  rain soaks my clothing, adding to the weight; it makes it harder to hold on. 

I dread the end of summer.  Even as the days shorten and cool, I feel myself starting to wither…..just like my garden. 

I could really use the sunshine and a beach, right about now. 

It’s hard.  I’m exhausted.  My boys are incredibly difficult right now.  We’re long beyond the October crash……this must be the November burn. Crash and Burn!

I’m sick of saying, “It’s hard.  I’m exhausted.” I want desperately to connect and yet…I have nothing.  I have zero energy to attempt connection.  But without connection, I’m alone.  So which is it…… it’s a losing battle.  

Sometimes I feel that if I could explain what my life is like that you might get it…..But I’m realizing that unless you live it, you won’t fully understand it. I share bits and pieces but never the whole….it would be too much to handle.  I know this because it’s too much to handle.

There is a certain amount of grieving.  Grieving normalcy…..But mostly there is just soul crushing exhaustion.  It’s like a cloud of nothingness with vague wisps of sadness and loneliness woven throughout.
I love my children and I hate how difficult they are.  

Autism, ADHD, Anxiety…..Even though they are labels given to two of my boys, our entire family is deeply effected.

There is so much chaos.  I feel like I’m constantly drowning.  I manage to grab small breaths of air….never enough to breathe deeply and the waves crash consistently enough that I’m left in a constant state of  panic.  

There’s only so much space for panic and my two boys seem to have the corner on that market.  Too often when I feel the panic rising, I stuff it back down with a shallow breath.  As if I could control it….

There is so much guilt and shame and yet…..that’s one good thing about exhaustion…..somehow you can’t muster the energy to hold onto the guilt and shame.  You feel it and it makes you feel dirty and worthless; but it’s too heavy to carry and there’s too much to be done….

So you drop it like most of the other balls you drop on a daily basis…..

You cling to the edge of the cliff and hope……you hope that you make it through another day.  You hope that tomorrow will be better.  You cling to the hope that seasons change and that this dark and gloomy season will once again give way to sunshine.  You pray for wisdom, strength, and patience.  

You pray for your kids to just hurry up and fall asleep so you can have a moment to breathe…..then you feel guilty….then you remember how much work there still is to do tonight and you drop the guilt as exhaustion takes over once again.

A Fairly Regular Week Around Here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I feel worth less…..

It’s a pretty crappy feeling.

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

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

What does THAT even mean?

I mentioned that I felt depressed about my life yesterday.

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

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

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

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

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

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

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

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

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

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

I cannot give up.

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

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

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

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

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

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

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

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

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

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

But………

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

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

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

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

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

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

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

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

Jeremy Shares on Autism

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

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

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

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

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

Here is a video of him practicing at home.

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

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

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

Jeremy was asked to share about his talents.

Sharing his thoughts about finding out that he had autism

Talking about Sensory Overload and Meltdowns

Talking about Friendship and Autism

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

Moving Forward The Morning After

So I posted last night…..

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

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

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

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

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

That is the view to my right….

and this is my view straight ahead…..

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

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

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

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

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

I wonder if it’s about perspective.

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

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

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

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

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

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

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

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

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

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

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

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

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

Which is great.

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

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

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

But…..

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

and so….

I carry on…

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

Finding a lose thread

It feels like I have a million thoughts running through my brain. I just wish I could pick one of them, out of the jumble. I feel like if I could find the loose end of “one” thought……then maybe…..just maybe I could start to unravel this mess inside of myself.

But it seems like the harder I try to wrestle within myself…..the tighter the mess inside me gets and I’m left wondering if I should just stop fighting so hard to unravel it all or even if I should just let it all go?

The biggest thing weighing on me right now is Siah……always with a heavy weight of Jeremy……but today we had a meeting with Siah’s school.

It was a good meeting, as far as meetings go with the teachers, the resource teacher and the principal go.

I’m so…….so……….

I’m so conflicted about it all.

Siah is so different that Jeremy. I get that. I get that no two kids are the same. But I also know what we’ve been through as far as assessing Jeremy and getting him helps and I’m not sure how to even approach that with Siah.

On one hand, I feel like they are saying “THERE IS A PROBLEM.” And on the other hand, I hear that they see the potential within him and they want to know how they can best support him.

I actually do believe that this school and these people really do want to help my son succeed.

I find it so hard, when our experience with Jeremy and school has been SO negative. Dealing with Jeremy and “the school system” was soul crushing. I had people saying that he was a nice kid but then sending him out he the hall or the sick room cause they couldn’t “handle” him.

Throw the maternal guilt and a massive anxiety complex on top of it all……and you have a very messed up trying to function through the pain and rejection while trying to survive against ADHD and undiagnosed Autism.

I keep hearing snippets from today’s meeting playing through my brain and while I desperately want to believe the good about people and situations….I feel like I’ve got a war going on inside of me.

I want to fight for myself and my kids. I feel like I can’t trust people. I feel like people don’t know us and won’t see “us”. I feel like they won’t understand and see the “good”. I feel like I have to fight…….kicking and screaming for everything that we deserve.

I don’t want to live like that. I’m so tired. I’m so tired of living “on my own”. Of raising my kids, “on my own”. Of fighting for my and my children’s right to be accepted and loved as they are………and not only “if they conform to social norms……”

I’m tired.

Jon and I were talking the other day and while I feel like I’ve recovered some from the intensity of the cancer devastation……..we’re left wondering if we will always feel tired like this…..

I don’t know.

I want to hear that people love my kids and want to spend time with them. I don’t want to always hear about how my kids are a problem or how they fall short. I don’t want to hear that I should spank or discipline harsher. I don’t want to hear that I just need to do it “this way” or “that way”

I want to hear that my kids are treasures and that they are special. And not because they have “special needs”

I need to go…..to go to sleep. To hopefully let some of this settle. Maybe in the morning, maybe then I can find a loose end to start unraveling. But for now……for now I will sleep…….and cry……..I hate crying. I’m so tired of crying. It sucks…..leaves you puffy and with a headache…..I hate that.

Cannot wait for the Christmas break. It cannot come soon enough.

Let’s Talk About Mental Health Issues……

I’m frustrated with the whole concept of guilt and Mental Health.

I, in no way, have all the answers; and on most days I question whether I have any answers. What I do know is that I deal with anxiety and have for as long as I can remember. My mom says that I was fearless as a child and so, I’m not exactly sure what happened, because I don’t really have any concrete memories where I wasn’t dealing with anxiety.

At least 3 of my kids deal with some level of anxiety and Jeremy is also dealing with ADHD, Executive Function Disorder, Learning Disability and Autism. All of those fall under the “Mental Health” umbrella. They all have areas of “Brain Disfunction.” In my mind, that means there are areas where the brain is not functioning in a Neuro-typical way. I do understand that there are many who don’t want autism classified as a mental health disorder because it is usually thought of as being a genetically predetermined disorder, and there is a certain amount of “shame” associated with mental illness or mental disorders.

I choose to think differently about the whole concept of Mental Health.

I deal with any physical health issues for myself or my children in a completely non-guilty manner. If myself or one of the kids has a cold, or a broken bone or some other physical ailment, I don’t feel guilty taking them in to see our Family Dr or a specialist, if needed. Why then, if myself or one of the kids are dealing with Mental Health Issues, should it be any different?

In my mind, it shouldn’t be any different at all.

If my car needs a tune up. I get it done. If my house needs a hose for the water tank, we get it done. If our clothes are in need of repair or replacement, then I take care of it. Why do we take care of our physical bodies and our belongings, but hesitate when it comes to mental and emotional issues.

We, often, hesitate to talk about it openly and freely. Sometimes we hesitate to even admit it to ourselves. It’s a tricky subject and not one that everyone understands or even cares to try to understand, but Mental Health and Mental Illness are not going anywhere.

I’m trying to raise my kids to understand that Mental Health is as important as Physical Health. It’s important to take care of your mental/emotional state; and it’s important to take care of your physical state.

If I needed insulin because my body never produced it, or it produced a very small amount……would that make me “less” in some way. Would it mean that I was broken and not as valuable or worthy as someone else who didn’t need insulin shots? So what if I need extra seratonin in my brain, for either a while or even forever……I don’t see how the two are different. What if genetically, I don’t produce as much as you do? Or what if I experienced some traumatic event in my life and the stress has negatively affected my body in such a way that I needed some help, in the form of seratonin or any other mental health drug…….why is that any different than needing insulin or any other drug.

I don’t see that it is.

In my family, there seems to be a huge history of anxiety and depression. I have also experienced a stillbirth, 4 pregnancy losses and cancer, as well as dealing with a child/children with special needs. So whether it’s genetically predispositioned or because of some life trauma…..I don’t know.

What I do know, is that being on medicine has helped “ME.” I’m not advocating that everyone needs to be on meds. Because if you can deal with your mental health issues through counselling and Cognitive Behaviour Therapy….then awesome….but by doing that, you are still “taking care of” your mental health.

For the first time in my life, that I can remember, I feel like the inside of me matches the outside of me. It’s crazy hard to explain, but I will try. I’ve had many people not believe or understand that I was anxious (as a teen or young adult) because I seemed so confident and in control. I think that must be where my kids get it from. They seem to hold themselves (mostly) together when they are at school or church or “out” and then when they get home, they feel comfortable enough to “fall apart”.

I don’t know that I did a lot of “falling apart” but I did use “control” as a method of dealing with how “out of control” I felt. I felt that I needed to control my situations, the people around me and myself in order to feel safe. It got to the point where my “control issues” were hurting my relationships. And yet, I didn’t understand “why” I felt the need to “control” everything. I just knew that I felt safer when I knew exactly what to expect.

I did believe that I was a good person and yet a part of me didn’t believe that. I believed I was a good friend and yet the insecurity and anxieties held me back from actually “being a good friend.” I thought I could do things like “sing” and yet I could never put myself fully “out there” because I couldn’t possibly be good enough and what if I made a mistake…..what would people think of me. I know that lots of people deal with a certain amount of insecurity and I don’t know that I can fully explain just how it felt inside of me. But imagine if you thought you were good enough but then you weren’t really sure if you could believe yourself…..and if you were so unsure then maybe you really weren’t good enough. Throw in some perfection issues which meant that you couldn’t or wouldn’t do ANYTHING you weren’t absolutely certain that you could do with 100% accuracy and confidence………and that pretty much left you not doing much at all. You wanted to do “stuff” but unless you could control the situation and knew exactly what to to expect and exactly what people’s reactions would be and exactly what the outcome would be……….which having all of that fall into place for any specific event, was pretty much an impossibility and if it did…..you came across so confident that no one would ever guess that you were dealing with insecurity and anxiety……and throw on top of that whole mess, that you never wanted to come across as anything less than confident and so you were exhausted all the time just trying to hold yourself together so that you could come across “PERFECTLY” because anything less than perfection was failure and “FAILURE” was never acceptable and basically you have a perfect recipe for disaster.

Knowing what I went through as a teenager/adult, and then when I finally figured out that I was dealing with “anxiety”, feeling so relieved and yet angry and grieved over all the lost time………I am strongly advocating for my children’s Mental Health when necessary.

I look back at my teenage years when I didn’t feel strong enough or worthy enough or acceptable enough to do things like, go to college or university. I figured that I was good at looking after kids and so rather than do things I was interested in, like music or teaching or even in the medical field….I took whatever jobs fell into my lap, got married and had kids. I was too scared to do anything else.

I love my husband. I love my kids. I’m not unhappy with my life, and yet…..I could have done things differently. I’ve shared this with people before and I usually hear something like, “We all feel insecure and regretful of the things we wish we had done but didn’t do.” This is different. I’m talking about life crippling anxiety. Like there where things I wanted to do and yet was SO scared to do them that even the thought of doing it stressed me out, and so I did what felt safe.

I’ve lived my entire life, up until now…..only doing things that felt safe……and that doesn’t seem like a huge list of things, especially compared to things that I have dreamed about doing over the years.

I’ve accomplished a fair amount in my 38 years but I’ve dreamed of accomplishing so much more. I’ve just discarded those dreams because I wasn’t good enough, or people would think I was stupid for wanting to do those things. I believed the lie that others could do it better than me and I shouldn’t even try in case I failed. Because failing is one of the worst things ever. I believed that. I’ve believed that for so many years and I hate it.

This is why I’m a HUGE advocate for my kids and their mental health. I’ve pushed my kids beyond every “limitation” that I’ve had that has held me back. I’ve explained why I’m pushing them into uncomfortable situations. I’ve had them ask for things from adults/teachers/doctors/etc. when they felt uncomfortable doing so. Discomfort isn’t a bad thing. Failing isn’t a bad thing. It just means that you tried and for whatever reason it didn’t work out, this time……..and that’s ok.

Never try, never win
never get a break
You miss a hundred percent of the
shots you never take

Hedley came out with this song and it’s been HUGE for me……

I’m a lot more open now. I say “yes”, when everything in me wants to say “no”, because “NO” is safe. I don’t mean that I say yes to everything. I’m still in recovery mode from the 2.5 years of cancer treatment and the havoc that wreaked on me. But, I will honestly assess my stress level, versus just saying “NO” because I’m scared. I ask myself if I’m allowing anxiety to hold me back from saying yes to something that I might actually want to do and even be good at. I try to be honest with myself about what I can do and what I can’t do, and to not view everything through the lenses of anxiety. I will even tell others that any hesitation they might sense from me is anxiety and I’m not willing to allow it to control or rule my life any longer.

Does this mean that all my days are good, confident days…..NOPE! Not at all. And when I’m having a particularly bad day – as far as anxiety goes – I am gentle with myself and honest with both myself and others as to how I am doing. Because I know that tomorrow is a new day and most likely I won’t feel the same. I have stronger days and weaker days, but now I know that I am “fighting” anxiety and that it’s not me……I’m not bad.

I am enough. I am good enough. I am strong enough. I am confident enough. I am enough.

I want my kids to believe that they are good enough and can do whatever they want. I want them to “go for” the things they want and so I advocate for them and I encourage them to advocate on their own behalf. We talk about strategies for dealing with “issues” and “insecurities” and “anxieties”. We use medication as an aid, if necessary, and we do it all without guilt. There is no guilt or shame in needing help…….whether its physical, mental, emotional or spiritual.

I am enough!
They are enough!
You are enough!

Exhaustion

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I’m so tired…….I think I’ve been doing better and then something comes along and knocks me down so flat that I feel like any forward movement I’ve made has all been taken away and I’m right back down to scraping the bottom of the emotional/mental/physical barrel.

This week has really done me in. Between first days and lunches and anxiety and high school……it was all pretty overwhelming but I was hanging in there.

Today totally just knocked me over the edge.

I was originally going to take Jeremy out to the appt by myself, and then we had some issues trying to work out who was going to watch Judah and who would pick up Siah and I thought that maybe I might get out of having to deal with today (avoidance……awesome escapism tactic). Jon felt I really needed to be there.

Oh, I didn’t want to. It’s so hard. When your son doesn’t fit “the mold” neatly and nicely and attempting to diagnose the “puzzle” that is your child means that you have to fight with every ounce of strength that you have and even with some that you don’t have…….it’s tough. And after fighting last time and being so dismissed…….it was such a blow that I…..we….didn’t even really want to hope for this to work out.

And yet we want the best for our son and so we scrape together the courage to go to a meeting where we bare our souls and pull out every negative aspect of our son and of ourselves and of our families…….and lay it all out for someone to see and hear and sift through, in the hopes that they will be able to give us answers – or at the very least clues that will help us to help our child.

I sit there in these meetings and wonder how our genetic soup managed to come together in such a way that our son was given this……

ADHD, ODD, Anxiety, SPD and possibly ASD…..all mashed up together in one small child.

It’s SO much. It’s so much for us to deal with. It’s so much for him to deal with. It’s so much.

And yet, like with Angelica……..we make it as “normal” as we can. Bald is beautiful. Confidence is beautiful. And our brains are all unique and the things that make us unique make us so very special. We play up the incredible aspects and attempt to make the difficult things “just a matter of fact”.

But the truth is……it’s not easy. In fact, somedays it feels like a crushing impossibility.

We won’t know the results for a bit. I’m hoping for an Autism Diagnosis because there is so much in that particular diagnosis that makes sense and yet, I’m so scared to get my hopes up.

I want help. I’m tired. I’m tired of fighting. I’m tired of trying to be strong. I’m tired of carrying everyone. I’m just really tired.

To be honest, getting the diagnosis would feel like someone was validating just how difficult the past 12 years have been. Don’t get me wrong. I love this young man with every fiber of my being. Which is why I’m fighting with energy that I don’t really feel I have to give…….but it’s been tough…..really tough. And I’m tired.

I’m so tired.