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.

Vacation 2014 – Part 3

Ok, so life got busy and I didn’t end up finishing posting about our vacation.

I’m sure that some of you feel like you’ve just been left hanging……..HA!!!!

Ok, maybe not so much, but……continuing on….

It’s amazing how quickly the busy-ness and chaos seems to seep back into every facet of your life, once you leave the “vacation” and head back into reality. I guess that’s the beauty of vacation or holiday time….it’s a moment to relax, settle, absorb……just breathe.


There were lots of those moments, in between the bustle of life with 6/7 people. No family vacation is really a vacation for the parents…..it’s more of a break. Once I realized and accepted that, I’ve been a lot more content on our “holiday’s”.

Jon took the kids on a number of walks and this sweet boy here…..

He brought me back something from almost every walk. He is such a thoughtful little soul.

This time he brought me back some lovely flower puff things…..I have no idea what they were and they were almost dried, but I put them in a beer bottle vase and he was so thrilled to see his gift treasured.

After the first 3 days of sheer panic, this lovely fellow settled down (as long as there were no other dogs walking past) into the camping lifestyle and was almost a gentleman….almost!!!!


He has such sad eyes.

There was SO. MUCH. SWIMMING…. and Judah even sucked up his courage enough to jump off the dock TWICE!!!!

Jeremy was determined to get this rubbermaid bin to work as a boat and although it took a fair amount of figuring to work out the ballast and balance…he finally managed to tool around a little, until it dipped a little too much at one corner and then filled up and sank….

Sometime, this little one just slays me with his nerdliness…..he is such a sweet quirky treasure.

I have no idea what he was trying to show me in this picture.

Here is where you get the best peek of my little darling….ear folded over and all…and he wasn’t swimming….just wearing the goggles because he wanted to.

Oh I love him, so!

The Skagit Valley is a beautiful place with so many interesting things to look at and experience. It feels like our own little corner of heaven on earth. These puff ball mushrooms were just growing in the campsite, but it wasn’t till we got home and I could google them that I found out they were edible and not poisonous. They were just so cute, all nestled into the ground.

Read about Part 1 of our vacation here.

Read about Part 2 of our vacation here.

Part 4 coming….

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. 🙂

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.

What’s in a label

another post from Jon

In the summer of 2011, right in the middle of dealing with cancer and a 1 yr old baby, and… everything, we had an assessment to see if Jeremy had ASD. Being the geeky, need-to-know people that we are, we went to the assessment armed with DSM-IV self tests, and a whole host of facts about Autism, Asperger Syndrome, and mental health issues. Asperger’s explained everything: pedantic rules, unexplained extreme anxiety, very poor social development, inability to empathize or sympathize (while at the same time being very concerned about anyone being in pain or acting upset), single-minded unyielding focus on certain topics with the inability to focus on almost anything else, and a whole host of other stuff.

Light Reading
Light Reading

I’m not totally sure why, but he was not diagnosed with ASD, but rather Extreme AD/HD (one of the most extreme cases that BC Children’s mental health had ever seen).  I was so upset.  People think that that is weird or that maybe I wanted the money and programs that are available to kids with ASD, that are not available for AD/HD kids.  Some think that a diagnosis that is of a “lessor” disorder should be good news.  That’s totally missing the point.

Labels (or proper diagnosis) don’t change anything about the person.  Jeremy is an amazing and incredibly bright boy, that struggles with a host of things.  Remove him from the medical system and nothing about him changes.  With or without a diagnosis he is still smart, and still doesn’t know how to connect with a guest in our house, and still cannot read the faces or emotions of the people around him, and would still never get invited to a non-relative’s birthday, and would still destroy very valuable things that are not important to him, and would still not be able to tell a joke to save his life.  He would also still be able to look at a box of junk and invent almost anything he can think of with creative problem solving that boggles the mind, and he would still melt when he stumbles on something that earns him praise.

There are reasons why he didn’t get the label of ASD.  One of the reasons is that he would get angry and loose all ability to communicate when he was very young.  So we drilled into him how to express what he was feeling.  We could not understand how that could be so difficult but after years of walking him through: “are you ‘angry’? are you ’embarrassed’? are you ‘frustrated’? are you ‘sad’? …” he got to the point where he knows, at least academically, what emotions there are and what they apply to.  So if he is being assessed and is shown a picture of someone expressing an emotion, he might be able to access that academic information and tell you they are ‘sad’ or ‘happy’.  Put him in a classroom where he leaves his desk in the middle of a lesson to collect another broken pencil lead (literally a desk full of tips of pencils that had broken), he could not tell by looking at her face or body language that a teacher was getting impatient with him.  Another thing that I think worked against us is that we came in with so much information and were so convinced that it was ASD, that the psychologist kind of felt like she should push back and examine other possibilities…. So we got “Extreme AD/HD with Anxiety and Sensory Processing Disorders”

The label of ‘Extreme’ AD/HD got us new meds and more advanced medical care and it helped a little.  Add in “Anxiety Disorder” and meds for that it made some things better and some things worse.  Add in “Sensory Processing Disorder” and that explains some things and gives us strategies that help a little (weighted blankets, sensory deprivation rooms, sensory toys, dog clickers… he desperately wants one of these.)

Here’s the issue for me: If I take Jeremy to a summer camp where they have qualified supervisors that know about children’s mental health issues and I say “here is my son, he has ADHD / SPD / Anxiety”, then he gets treated thoughtfully, but he will still likely have a good handful of avoidable negative experiences.  If I say “here is my son, he has Asperger Syndrome”, then he gets treated in a way that avoids almost all problems.  That’s where a label makes a difference.

A label doesn’t make the actual condition better or worse.  It doesn’t validate, exonerate or diminish you as a parent. It doesn’t make symptoms go or come directly.  But it does give you a common language, terms that you and the people that you work with understand right away.  It does give you access to tools and strategies that are unique to the issue.  It does give you the ability to sit your extended family down and say, “our son has _____, and the symptoms for that are ______, and this is how we deal with it, and this is what you can do to help”.

Its a lot harder to have a diagnoses that doesn’t cover the issues and you are left trying to say something like: “hi, here is our son with ‘Alphabet Soup’, but he’s also got issues with social skills, and he has odd things that crank him up with anxiety and they don’t seem obvious, so if you see (here is my list of 10 things for Jeremy to avoid) any of these, then you might need to let him go take a walk outside, and if you play sports you will need to watch what his ‘teammates’ do and say to him because he doesn’t understand… (and at this point they are tuning you out and wondering what monster you are sending them).”

After working with the current diagnosis for almost 2 years and trying everything imaginable with some very very good behavioral therapists and occupational therapists, our amazing home school is using some of their resource money to pay for a private reassessment for Jeremy.  The behavioral therapist is attaching a note about her work and observations and has told us, “if he doesn’t walk out with an ASD diagnosis then I am in the wrong career.”

I’m hoping soon that I can just say without qualifiers or exceptions that: “Our son is autistic.  He has Asperger’s. If you don’t know what that means then educate yourself – watch the Temple Grandin movie, read a book or two, watch the first season of Parenthood (not totally accurate, but close enough). Then armed with that information, please come and be an involved and help us out… or at least understand what we are dealing with and cut us some slack.”

I’m not saying that anyone is doing a bad job or is not supportive. In fact we have very good family and understanding friends and great church youth leaders.  But even they are struggling with trying to understand how to treat J with a diagnosis that is very complex and doesn’t cover everything rather than just reading up on what it really is.

So we wait for the reassessment; maybe August, probably September.  We’ll let you know how it goes.

~ Jon

Changes can be Good

So many new changes…

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We moved into our new home just over a week ago. The home itself is lovely and bright but the actual move just about did us in.

We have moved so many times over the past 18 years but this move was by far the absolute hardest…..even taking our move from Abbotsford to Langley after 10 years of living there.

I’m not exactly sure what made this move so horrific, but I’m almost positive that our “reserves” to be able to handle stress were non-existent and that made things so SO tough.

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We have things settled down to where we can sort of function but we are not actually “settled”. My room is a disaster with unopened boxes still stacked about and we are still trying to figure out how to place our furniture. It’s tough when everything had a place and now the layout has changed and you are not sure how to “Tetris” everything in. There is quite a bit of puzzling and re-arranging to try to fit 7 people and all of their stuff into a new space.

Jeremy is finally starting back into his regular homeschool routine after 2 weeks of chaos. We started a little bit at the end of last week just to ease him into it and then we hit the ground running this morning. Our “office/homeschool” room is still a bit chaotic but it’s coming along slowly.

One of the bigger changes around here, as if moving wasn’t enough, is that Siah is going to the local Elementary School. He started the first Monday that we moved. He’s been so excited. We had a big meeting with the school before we moved and then another “intake meeting”. That one was kind of rough because you are talking about all the ways your child struggles and will need help. Having a child with learning differences is not easy but having already gone through the Infant mental Health Clinic at BC Children’s has totally given us a leg up to be able to get him the help he needs.

It’s exciting to see him SO excited to go to school and meet new friends. Today he is going to attend until noon. They’ve started him attending slowly and are working up. We’ve gone from 1 hour last Monday to half a day today.

I’m shocked at how much it feels like I have “all this free time”. It’s quite a lot of work teaching two kiddos while supervising a third and trying to care for the home too.

So not only are we adjusting to a new home but also a new schooling balance. I’m excited and exhausted. Looking forward to spending the summer out on my deck and in the backyard.

Just trying to get through today…….that’s how my world feels right now. Just focused on today…….sometimes that’s all I can handle.

But I feel like this is a new beginning and I’m pretty excited. I have no idea what the future holds but for the first time in a long time……I’m feeling that we are headed in an upward direction. I feel like I can breathe. I don’t feel like I’m drowning. I’m tired but feel like we’ve crossed over from barely treading water to being able to rest and rejuvenate. It’s such a welcome feeling after the past 3 years.

Tough days

It’s been a tough day today.

I showed up at music practice tonight sobbing and barely managed to scrape myself together enough to walk in only looking like I was half falling apart……bright puffy eyes and red nose.

Parenting special needs kids is not easy and some days are tougher than others. Today was a fairly normal day as far as days go but it was still tough.

The boys wake up moving at warp speed which means lots of fights, lots of meltdowns, lots of yelling and screaming and taunting, very little listening, very little “pause and think before you act” and just generally a whole lot of frustration. And that is all in between 7-8am. Fun! By that point I feel ready to strangle someone but I have hopefully already doled out the morning meds.

It takes about an hour to an hour & a half for the meds to kick in……so however it takes to get the meds into them……it’s still another hour or so until the effect starts to kick in. Cue a repeat of the previous very little/very a lot section of actions.

Around 9-9:30am, we start school and depending on the particular mood of the day, school could be finished in 2 hours or it could take all day. Today we were still working on homework at 3pm……which is an indication of how today went.

There is so much frustration from the boys because they want to be doing anything other than school and I feel like I’m constantly fighting each one of them over different things.

Sometimes, I feel strong enough to handle it and others (like recently), I don’t feel strong enough to handle it all.

I’ve been waffling back and forth about trying Siah in public school because it would be one less thing that I would have to do and fight with him over, spend hours and hours prepping and on the admin stuff. I might actually be able to clean my house or have/create/stick to a meal plan. Wouldn’t that be incredible?

But today he had a gymnastic class that just pushed me over the edge. He was made to sit out of the first half of the class for over 20 mins. Now, in his defence…..I believe the teacher forgot about him…..but I can’t even believe I typed that sentence up. I should not be defending a teacher for forgetting about my child or even for finding it easier to not have him in the class. The class is at 5pm. Meds have started to wear off by this point and unless you really love
him or have one on one time with him……by this post in the evening Siah can be a handful.

But it broke my heart to see him “cast aside” because he couldn’t behave. It was worse in that parents on either side of me were asking me what I was found to do about this as they found the treatment as unacceptable as I did.

I ended up talking to the teacher and surprise, surprise……I started crying. Yah! Just what some twenty something guy want a to deal with an emotional mother of a bratty kid. Yay me!

I can’t fathom sending him to school to have him treated like this. He spent over half the class in total sitting off to the side. The punishment was not effective. If you know ADHD, you will know that long, isolating punishments are rarely effective. And so what? What do I do? Continue to put him in a place that could be so good for him if he would learn? Or continue to put him in a situation where he is leaning to sit in “time outs”? Cause if they continue to put him off to the side….that’s what he will be learning, not how to act appropriately. Or do I pull him out of something that could be great for him.

Well, I managed to get myself together during music practise but driving home, I started to fall apart again.

It’s so tough. Parenting difficult children is so tough and today I feel like a failure. I feel very alone and very insecure. It’s a crappy place to be in. I’m really hoping that I wake up up and feel so much more positive in the morning. I’m REALLY hoping!

For Me, The Investement is Worth it

It’s Wednesday night and Angelica has Riding Therapy. Jon has been taking the two little boys with him when he takes Geli which gives me just over an hour to myself (sort of).

Geli’s been taking Therapeutic Horseback Riding Lessons since the summer. She LOVES it and it’s great exercise for her core and they are really working her quads which is one of the muscles that severely wasted away over the past 2 years.

First Day of School

First Day of School

I still have Jeremy and Xandra at home with me, but for this hour…..they fend for themselves.

I’ve been pounding out schoolwork for the two little boys on previous Wednesday’s, but I am taking the time tonight to type out an update on where the boys are doing with school.

Natures Stained Glass

Nature’s Stained Glass

Long story short……They are both doing INCREDIBLE.

We had an assessment today with their “teacher” who oversees me who is actually doing the “teaching”. It was not the most exciting meeting, but it validated the effort that I’m putting in which makes it worth it…..sort of.

This whole homeschooling thing that I’ve been doing. It’s a freaking full time job. Both boys definitely have multiple issues. Jeremy’s have been diagnosed (although I’m not sure of how accurate the diagnosis’ have been or if there should be another one.) Josiah’s have yet to be diagnosed, BUT he definitely has sensory issues and I’m pretty much 100% positive that he struggles with ADHD although a lesser form than Jeremy.

Teddy Bear Patterns

Teddy Bear Patterns

We have an appointment for Jeremy with the psychologist at the ADHD clinic at the Mental Health Unit at BC Children’s on Monday and I’ll be asking the psychologist what it will take to get Siah seen as a sibling.

L is for Leaves

L is for Leaves

Having said that….Josiah is LIGHT YEARS ahead of where Jeremy was at this point in his kindergarten career. Some of that can be attributed to not having as severe a case of ADHD as Jeremy but I also believe that being able to “cater” to his busy-ness and his particular learning style also contributes to it. I don’t believe that Siah is WAY smarter than Jeremy but that he has been given an advantage over Jeremy in many ways because of what Jeremy has gone through in previous school years. There are aspects of that, that make me sad, but there is nothing I can do about the past. I can only learn from it and move forward.

White Crown of Egypt

The White King of Egypt’s Crown

When I watch Siah sliding off his chair into a puddle on the floor as he chants his alphabet sounds, I am struck with a sobering thought and I wonder how much of the past month and a half of kindergarten he would have spent in the corner or on a time out chair or at the principals office. When he balks at using a pencil, preferring to use a pen because it “writes softer” (he has issues with the way the pencil “drags” on the paper)….I wonder how frustrated his teacher would have gotten with him for not wanting to write. It’s not that I fault the teacher, but there is no way that Siah would flourish and grow in the way that he’s been able to over the past month and a half.

Frustration

Moments of Frustration

We start our mornings around 9am and we are typically finished for the day at noon. If Jeremy is having a particularly rough day, he might still need to do a few things after lunch, but most days he is finished by lunch time as well. Lest you wonder, he’s ahead……WAY AHEAD of where he should be in his lessons for the year AND…..he’s done more in the past month and a half than he would have done in 4 months at school AND…..the best part….he ACTUALLY KNOWS WHAT HE’S BEEN STUDYING AND WORKING ON.

He’s learning and even better….he’s SO EXCITED TO LEARN!

Playground

He can DO IT!!

The teacher is talking about taking him off of the “special needs” educational track and putting him on a normal education track…..and honestly, last year when she first brought that up….I was terrified…this year it’s not so scarey because I am seeing how much he has improved and in so many ways.

Cuniform Tablets

Cuniform Tablets

He still needs help with the “social” aspect of life. There is so much that he doesn’t “get” and it is in that area that I wonder if there should be a different or additional diagnosis. Fortunately, he is still working with an AMAZING Behaviour Therapist. Elizabeth McWilliams Hewitt has been a most incredible blessing to our lives. There are things that she’s explained in ways that make sense to ALL OF US and tips that she has shared that have made HUGE differences in the way that Jeremy is able to “handle” life and in the way that we are able to deal with him and to help him deal with the differences in the his life and in the way that we can understand what he is going through. We are so thankful to have her as a part of Jeremy’s team.

Brothers

Brothers

We have had a full month and a half of school. We’ve crafted and created. We’ve printed and written. We’ve typed and painted. We’ve gone for nature walks. We’ve done PE. Jeremy is taking a Computers and Technology class at the TLA school. Siah is so close to reading. Judah LOVES to do exactly what Siah is doing and is so excited to be “coloring” as he calls it…..that’s all he thinks Siah is doing. Not learning, not dreading school, not getting in trouble for his wiggly bum….just coloring and cutting and gluing.

Grade 7

His TLA Avatar and apparently I need to take a better “grade 7” school picture.

Jeremy is getting crazy amazing marks and although I don’t care what his grades are, I LOVE seeing how proud he is of himself every time he scores another 100%.

It’s been a good year so far. It’s been a tough year. Teaching two boys with issues is tough. Teaching two boys with “ISSUES” that rub each other the wrong way….Siah needs to make noise and the noise flips Jeremy the crap right out…..on some days seems next to impossible and yet….it’s worth it.

Hand Shaking

Making Butter

I would love to have the boys in school. I’d love to be able to just enjoy Judah especially after the past couple of years we’ve been through. I’d love to have time to craft and sit and heck, sleep…..but, I’m choosing to look at this time as an investment. I’m investing into my boys and I can see the initial payoff…..I wonder how incredible the pay off will be as they continue to grow and mature.

Butter Seperated

Butter

I get the privilege of helping my boys to excel and succeed. Some days I wish I didn’t have to help so much or see it all so clearly and from such a close viewpoint, but I know this is worth it. In the very core of me, I know I’m doing the right thing for right now. I keep having to remind myself of that on VERY BAD DAYS (Yesterday was one!!!)

Ribs and Lungs

Ribs and Lungs

I have no idea how long we will continue to do this for. If you had asked me about homeschooling a few years ago, I’d have told you that you were insane….if fact, I think I said that to one of my friends…..for sure I thought it when my sister started homeschooling her girls and yet……right now, it’s what’s best for my boys.

Food Chain Chart

Science Project

My house is messier than I’d like. I have next to no free time. I have zero energy by the time the evening rolls around…….but……my boys are succeeding in ways that I couldn’t have even imagined 2 years ago….and that is so incredible to me.

Printing

Printing and a Tiger

These pictures that are throughout this post are just some of the pics that I’ve taken from our many crafts and adventures throughout the past one and a half months. It’s been a busy but fun filled time and I’m excited to see where these amazing boys will be at the end of the year….at the end of this school year. You can see the rest of the pics if you want to, right here!

A Poem by Jeremy

It’s my birthday today and Jeremy wrote a poem that I wanted to share with you. It’s so totally and completely HIM!

The Autumn Leaves
by Jeremy Culley

The Fall leaves rustle in the Day Time Sky
Gloomy and Beautiful and Shimmering
The Leaves are crunching and Grinding
On Your Boots that is on your foot.
The Pumpkins are ripe for Picking
And the Pies are Getting Made
And the Corn is Perfect
For Thanksgiving. The Turkeys
Are Screaming in Terror. We
Are Getting the Guns Ready.
THE END!