Vacation 2014 – Part 2

There is something absolutely INCREDIBLE about this place. It’s like….you are so far away from EVERYTHING that everything that is pressing on you or weighing heavy on you starts to fade into the background and you can just “be present” in the beauty of it all.

I love it here

It doesn’t even seem like much from this picture (it was SO HAZY from the forest fires further in Washington)……how about this one…..

The Sky Before the Storm

We had either just had a storm or were just about to have a storm blow through when I took this picture.

We’ve been coming to this particular lake since the year we got married….and have only missed 2 maybe 3 years. I really, REALLY didn’t want to come this year. I’ve just been so worn down with my life and the lives of those that I’m responsible for. Each day feels like it requires super human effort (that I don’t have to give), and I know that I have people who wonder why I’m not visiting or doing coffee – and to be completely honest……I’m just surviving each day…..barely!

I was SO exhausted and packing up for the lake just about did me in. It took about 3-4 days of early nights and (I’m so incredibly thankful to my boys) not-too-early mornings for me to feel like I was actually unwinding and relaxing.

Seeing as we weren’t quite set up, (we arrived a lot later than intended) we had a lovely breakfast of cereal and crazy….pretty much a normal breakfast for us. Note Jon and Jeremy’s sweaters…..in true ADHD form, both of them managed to forget to pack a sweatshirt or coat, but ever so fortunately….Xani was able to help both of them out. Nice Ugly Christmas Sweater, Jon!!!!!

First Morning

(Siah pipes up completely randomly, as he is known to do: “Milk comes from plants, Judah……right Mom?” I had to laugh because that’s all they know – soy and almond milk)

Somethings are more important that others….and coffee and clean teeth rank pretty high in my books.

Camp Mornings

This was the first time we have brought Zeus up to a community camp ground and he tends to be a bit of a nut job when other dogs are around….he just wants to play and play and play and play….so he was a bit unhappy that he was tied down and that we kept shushing him everytime a “friend” walked by.

Sad to be tied down

In Jeremy’s perfect world, he would be either Survivor Man or Cody Lundin. I asked him to put on shoes at one point and he informed me that he planned to be shoeless for the entire time we were up there as he needed to work on his calluses so he would have tough feet. At one point, he was practicing making feathersticks.

Working on Fiddlesticks

This was my attempt at a featherstick….not too shabby for a first time, eh?

My attempt at a Fiddlestick

We settled in to “camp life” fairly quickly. Jon and Jer took the chainsaw and headed out to find some deadfall so we could have AMAZING fires. At least we had this guy to look over our campsite and keep watch over us.

Chainsaw Carving

this was Jon’s first attempt at chainsaw art

Judah’s mantra for the entire 11 days was, “CAN HE BE MINE?” It didn’t matter if it was a frog, a fish, a mouse, a beetle or this particular grub/maggot thingy….He was found hiding in a piece of wood after Jon split it up…I found it to be equally fascinating and disgusting.

Gross and Fascinating

This was a very different vacation for us. Geli was at Camp Goodtimes Teen Camp for the first week, and Xandra and Jeremy slept during the day…..they never sleep during the day. It was so amazing to see them get some extra rest. I’ll admit that I was a bit worried that Jer might be getting sick, but nope…..just tired and needing a nap. The fresh air and outdoor activities seem to really agree with every one of us.

Resting....away from it all

It’s so fun to see my babies growing up. There is such an age difference between the three older kids and the two younger ones. And the two little boys are becoming such great friends as they grow a bit bigger and older. Jeremy actually remarked that he was a bit jealous of the fact that the two boys had each other, and that Geli and Xani had each other and that he was stuck in the middle alone.

I Love Him So....

The two littlest boys are becoming bigger, little boys and while they are not babies….they will always be my babies. Although I will admit that they are a lot easier to care for now that they are a bit older. I am definitely thankful to be beyond the baby stage. I love that I can snuggle all the babies in my life and give them back and get a good night sleep. HA!

Siah worked ALL DAY and a part of the next day and finally managed to chop through a tough waterlogged piece of wood……with a hatchet. Not an easy task, but he was so determined. He was so proud when it actually chopped through….he asked me to take a picture of him and his log. Note the bare feet…..we are ALL about safety!!!

Woodsman

Judah…..well…..he is just my sweet boy and I love him so. I really don’t need any reason to post pictures of him.

Love him so....

Part 1 here

Part 3 and a bazillion more photos coming soon.

Vacation 2014 – Part 1

So, we bought an RV………an OLD RV…..like a 1978 Vanguard RV.

We’ve named her Ethyl…..cause she’s an old lady and she runs on gas…..ha ha ha, we are so puny!

I’m not a tent person. I will camp in the wilderness without electricity or internet or plumbing for a month……..as long as I have walls and a fridge. I “HATE” using coolers. My sister, Chelle, is the most amazing camper….in a tent, with multiple coolers….she’s incredible. Me, I need walls and a fridge….

We tried a tent trailer two years ago, but….it just wasn’t the same as a trailer or RV. Last year, we moved from a townhouse to a HOUSE…..and that was our big purchase for the year. We also went to Puerto Vallarta for our anniversary….so Jon had used up all his vacation time and I really wasn’t wanting to head away from our new home, so no camping last year.

This year, we didn’t manage to “get away” as a couple and I have to tell you……it just about did me in to not have a break from the crazy and chaos that we call our everyday lives. That once a year “get-a-way” is a life saver….in so many ways and I was feeling so tapped out that I couldn’t even contemplate packing up to go away.

Typically, I take about 3 weeks and PLAN THE HECK out of our camping vacation. It involves an insane amount of lists, and an equally insane amount of time and effort, but then everything runs smoothly and we know exactly what to buy and what to pack and what we are having for meals and snacks, and on what days, those meals and snacks will be consumed.

It’s extremely anal!!!!! and I’m not even ashamed to admit it.

It makes everything stress free (as much as is possible with a 7 person family who will be camping for 2+ weeks in a remote location, off the grid).

This year, I didn’t want to go. My garden is GLORIOUS!!!!! and ready to harvest DAILY!!!!!

The RV that we got for a smoking deal, had/has a few “issues” that need to be dealt with and I wasn’t even certain that we’d actually be able to go.

SO I DID NOTHING…….

NO Lists
NO Planning
NO Packing
NO NOTHING!!!!!!!

And then Jon got the RV working enough that we could go and we were supposed to leave in two days.

CRAP!!!!!

So without any lists or planning or anything….we bought way too much, threw everything we could into the RV and the Van and about 4 hours later than planned, we were off….

It was so stressful…..like panic attack stressful. Like….I never want to “throw it all together” ever again…..planning, no matter how anal it seems, makes things WAY LESS STRESSFUL for ALL OF US!!!!!

The road up to the lake was amazing. (it’s 60KM of dirt road and typically a brutal washboard) We got the “PERFECT” spot. (right on the water and right across from the outhouse) and best of all……WE WERE THERE.

We parked. Set up the tent for the girls, threw a few things out onto our camping space, and WENT TO SLEEP!!!!

(Prepare yourself for a bazillion photos in the next few posts.)

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.

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.

Disconnecting and Connecting

We’ve explained to a few people that we are taking this weekend off.

Off of what?

We are attempting to step out of the craziness and business of the world and just take a moment.

I’ve been fascinated by the idea of a “Sabbath”. It is generally seen as a day of rest or a time of worship…..but in doing a little reading on it…..and mind you, it was very little reading, so I’m not claiming any sort of real adherence to a true Sabbath….the idea of time away, time apart, a time of rest and disconnecting with the world and reconnecting with family and friends sounded amazing to me.

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We have tried this before, always with good intentions and typically called it an “electronic free” weekend. We have taken away ipods and phones, turned off computers and TV’s and even turned off lights and once night we just used candles for light.

I’ve had hopes of planning food so that making big meals wouldn’t be necessary and we could spend as little time “working” and as much time “resting” and “connecting with each other.”

This weekend we are taking a Sabbath, and me being on my computer is technically against our rules, but the 3 bigger kids are at Youth Group and Jon is out for beers with a friend and the two littles are sleeping. I wanted to record my thoughts and feelings about tonight because it moved me so.

I wandered around the house after the little boys fell asleep and started to light the candles that I had put in place earlier in the week. (We tried candle light one night earlier this week to see if we had enough candles to make it comfortable to “be” together and not so dark that we couldn’t play a game or talk.) It felt so calming, like I was mentally and emotionally and physically slowing down and “settling”. I lit some candles and turned out some lights. Picked up a few stray toys that were lying around. Lit a few more candles and turned out a few more lights….

It was a strange and yet wonderful sensation. Now I am sitting on the couch, the room glowing a soft yellow and the blue from my screen a harsh light almost screaming at me to turn it off and just “be.”

We are so “on the go” and I’m really looking forward to stepping out of “everything” and just being. I have our meals planned for Saturday and Sunday. Including things like Crockpot Porridge and Chicken Soup and a Chicken and Rice Casserole…..other things too that are easy and quick to throw together, like sandwiches or just meat and cheese and pickles and crackers.

The kids have had a week or so to process and the intital “FREAK OUT” about no electronics has turned into ideas of things we can do as a family. The intense emotional connection to the internet and social media has been replaced by this calm acceptance and a remembrance of the fun times of playing cards by candle light, from the last time we did this.

Even my own thoughts of being away from my phone and from social media have died down and I realize that nothing is going to change if I don’t look at my phone for two days. I’m not going to miss any thing major. I’m not really needed “on the web”….and yet, here I am blogging. HA!!!

I’m so excited to take this time out. To disconnect from the world and reconnect with my family. To unplug the electronics and plug-in with my family. I’m looking forward to just “being” with my family as opposed to trying to “be in a million places at once.”

We tried to do this once a month before and did about 3 half assed months before we stopped making it a priority. I do hope we can really make this a priority and for longer.

I’m not in a fantasy dream world where we are going to sit around playing board games and drinking hot tea and cocoa all day while having a sing along around the fire place after dinner….

I have 5 kids. 5 LOUD, CRAZY, ADHD, ANXIETY, AUTISTIC, PMSing, AMAZING, CREATIVE, FABULOUS, LOVING, EXUBERANT, MESSY and NOT AS HELPFUL AS I’D LIKE KIDS. It’s pretty much guaranteed that someone is going to meltdown (every hour) and yet….for us parents to not have to be fighting against the ipods and internet and TV and Minecraft…….it will be “different”.

You know, once they start to detox from their electronic addiction.

We actually bought a small safe to put the electronics in….so that way no one is tempted to sneak theirs out…..ha ha ha! Actually as goofy as that sounds, it totally helps Jeremy because he has a crazy attachment to his iPod and knowing exactly where it is, puts his mind at rest. He’s not wondering where we hid it, and how can he find it, and where should he look so he can “sneak” it back…it’s just in the safe and when the time is right, he gets it back. I wish we had thought of that sooner. Would have saved us a whole lot of grief and fighting.

Oh well, I’m going to sign off now. See you on Monday.

I hope your weekend is full of rest and peace and joy.

Shalom

Summer Fun

This summer has been a good one. Different, but good. Most years, we have gone camping but with buying a house this year and Jon and I needing “sanity time”….camping just wasn’t in the cards this year.

Having a “backyard” has been so incredible. The stress of living in a townhouse (while having 5 active children and an incredibly grouchy Strata Council) was more than I could bear and this place has been an absolute blessing in SO MANY WAYS!

Probably the highlight of the summer – aside from our amazing trip to Mexico – has been just hanging out with my sisters and nephews and nieces. A couple of weeks ago we headed out to Ambleside Beach in West Vancouver. It might seem crazy to drive from Langley to West Vancouver when we could go to White Rock, but honestly, it’s so much easier to get our enormous brood and all our crap from home to beach if we go to Ambleside. And………because it’s all highway driving, it takes the same amount of time – 45 mins from door to water.

I think the biggest production was getting our gear from the vehicles to the sand. With 3 mom’s and 11 kids (but only 10 were on this particular trip – Jer was at a nerd convention – ie. Minecraft meet up), there is a colossal amount of “stuff”.

We managed it all in one trip…..cause we are amazing like that.

Once we found “the perfect spot” we set up the shade tent, parked the babies underneath it and started slathering kids with sunscreen. I have no idea how he did it, but the instant I got Judah slimed up – he managed to cover himself with sand…..which, while I think is nasty, I’ll admit it does offer an additional level of sun protection.

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It’s so fun having kids that are around the same age. The big girls all play together so well….although as teenagers – there is a lot more laying around and a lot less playing.

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Jack, Zac and Judah are all 3 years old and they alternate between playing incredibly and fighting like baboons. Which I’m sure will carry on throughout their lives….and it’s so fun to see them growing up together. This particular day, they were all playing so well together. It’s so neat hearing them chattering at each other at a 3 year old level with their lisps and mispronunciations. It’s absolutely darling.

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As happens wen you are at the beach, there was a lot of sand EVERYWHERE and a lot of really gritty food. YUCK! Nothing says yummy quite like gritty watermelon, carrots, and sandwiches….

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The girls went exploring up and down the beach and found a red jelly fish. It was pretty exciting until Xani got stung….then it was slightly less fun…..but still super cool to have found the giant slimy creature.

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I might be totally biased, but I think I have the cutest nephews ever.

Gio

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A.J.

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Zac

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We went crab hunting and taught the little boys how to hold them by pinching them from behind. We found some crabs that were smaller than dimes and those ones were less scary to hold than the bigger ones. But this dead one was the least scary of all.

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I love it when I find interesting things to snap a quick photo of and Ambleside didn’t disappoint. I’m sure that this orange rock was covered in some toxic sludge in order to make it this amazing color, but regardless of the reason….it was still beautiful surrounded by all the green seaweed.

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I’m so thankful for my sisters and all the love and support they give. I love that our kids are growing up together. I’m thrilled that we get to spend time together making amazing memories.

Do you have special memories of summers spent with family? Has this summer been a good one for you? What fun things have you done? I’d love to hear about it, if you’re willing to share.

If you’d like to see some more pics from our beach day, click here.

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.

Not like an elephant

My dad used to ask odd riddles. (I would never do that to my kids…) One of the riddles went like this: How do you carve an elephant out of a block of wood?  The answer is: You take a chisel to a block of wood and knock off anything that doesn’t look like an elephant.

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As dumb as that it, it’s relevant in raising a family in today’s world.  You have to know what your family is supposed to “look like” and knock off stuff that doesn’t look like that.  I guess its also like driving a car; after a while things just look like they are supposed to.  You can’t really explain why you stop before going through a green light, but something just doesn’t fit the normal and then a car runs a red light right in front of you.

This happened today for me with my daughter. Angelica has fought cancer, and now she is fighting to get back her strength and mobility.  She wants a car, she wants a job, and most of all she just wants to be normal (at least as ‘normal’ as one of my kids can be).

She is taking a class at school called ‘Planning’.  In this class they discuss all kinds of relevant stuff, like what skills will actually make you successful in the real world and how to think critically and how to prepare for a career and how to apply for a job.  This part is awesome!!!

In teaching the class, her teacher wants everything to be ‘real’. He wants them to make resumes with skills that they actually have, select a job from the local paper that they might actually apply for, write a cover letter for their tailored resume as if they were actually applying for that job, and then conduct a mock interview where you explain why you want the job and what your qualifications are.  This part is awesome!!!

The line was crossed for me when her teacher (name blurred to protect the well-meaning) told her that she couldn’t apply to be a “mother’s helper” because she can’t run after kids on a playground if they start to run away. Again, this is all in the name of making this exercise ‘real’, and I kind of understand the point.  This went back and forth a little bit, but today Angelica got this note:

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An alarm went off inside me… Now that I have processed it, written a response, received an apologetic call back from the teacher, I know perfectly well why this is bad, but I wrote the email before even fully thinking it through… I just knew it didn’t “look like an elephant”.  Here is my reply:

As per attached, I do not agree with this and I want it to stop immediately!

Angelica has fought cancer with every fiber of her being for over three years. It has been one of the most difficult things that I have seen a child go through. Angelica was very athletic and was talking about signing up for baseball before she was diagnosed with cancer. The most painful part of the treatment for Angelica was what it stole from her in terms of time and opportunity. Now she is in a place of working very hard to recover and we are constantly reinforcing for her that she can do anything.

In an attempt to make this job interview as real as possible, I believe that you have crossed a very sensitive and very real personal boundary. The facts of her “medical condition” have only been discussed at length with Mrs — and Mr —. By repeatedly questioning Angelica’s “mother’s helper” job application and telling her that she couldn’t do that job, you are 1) incorrect about her condition, 2) incorrect about what a mother’s helper job is, 3) acting in a manner that will be harmful to her recovery, and 4) breaking the spirit of my daughter.

  1. Her condition is such that she should avoid running or doing major impact, but is completely capable of it if needs be. I don’t believe that its really her responsibility or requirement to provide you all the details of her condition to take this class. If she says that she can be a mother’s helper, then you are in no position to say otherwise.
  2. We have employed a couple mother’s helpers in the past and it did not always include taking care of children. A mother’s helper may be required to do household chores so the mother (who is still in the home) can spend time with their child. A mother’s helper is not the same as a nanny as a nanny is left alone with the child and chores. If Angelica applied to be a mother’s helper to our family, and I knew what I know about her capabilities, I would hire her in a heartbeat.
  3. Angelica needs motivation to do all the physio that she is required to do. Her motivation right now is that she wants to buy a car, and she needs a job to do that, and she is doing her physio as hard as possible so that she can get an actual job as soon as possible. By making her focus on limitations (that aren’t actually there) you are taking away her motivation.
  4. Angelica, who holds her emotion in to her own detriment, has broken down in tears about this. She is getting the message from this process that she is not good enough, that she is broken, that she could never get a job. My daughter has the spirit of a fighter, and in fact she has fought through cancer to live. But it took a lot of effort on the part of us, her parents, school counselors, friends, neighbors and family to constantly encourage her to fight, to win. I did not tolerate negative reinforcement then, and I will not tolerate it now.

I believe that walking the kids through real world scenarios is VERY VERY good. I wish that I had been taught what it is to apply for and compete for a job when I was in school. I understand the motivation for making it real, but I ask you to step back from the “realism” in this area.

I was impressed when I read my own email. The teacher called me right away, immediately saw my point and has set out to amend the situation.  I wouldn’t always jump in to fight for my kids, but there are times when I do jump right away and I can’t really explain why… I just know what my family is supposed to look like and I’ll knock off anything that doesn’t look like it.

When do you jump in and fight for your kids, or let them fight for themselves?

A record setting pace

When I was 20 years old (seems like half a lifetime ago) I ran in the Vancouver Sun Run 10K and had a time of about 42 minutes.  I’m told that’s pretty good.  My new employer has been entering a yearly corporate team to the Sun Run and I signed up to go.

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When I signed up I had the idea in my head that I would try and beat my previous time which would require a significant amount of training from where I was(am).  Regardless, when you sign up you are supposed to put in the time that you predict you will finish in, and I conservatively put in 46 minutes or something like that.  This time effects your bib number, starting position and so on, as faster runners get to go first to prevent bottle-necking on the race course.

So I started running a few times a week.  I had a goal, a date to aim for, and I was excited about getting back into running.

Then Patti decided to start an 8 week “Couch to 5K” program but didn’t want to run alone and asked if I would join her.  I can’t put into words how quickly my goals changed.  Before she even got the full question out of her mouth, I no longer cared at all about the Sun Run or my time.  I immediately had a new goal; to be Patti’s running partner.

There are challenges that go along with this.  For starters, I might be turning 40 this year, but I can still run at a decent speed without training and I can definitely run a full 10K without stopping, even if the time is a bit high.  So my first challenge is to make Patti feel that she is not holding me back or cramping my style by getting me to run/walk/run through a fairly light 3k over 30 minutes.  Also, I’m still signed up for the Sun Run and I still have a low bib number coming so I need to not be a total mess out there, so I need to fit in the occasional 10K as well, but the goal is now completely different.

Why?  Why would I change my goal so fast?  Typically ADHD people don’t like to change goals once they are set on something.  On top of that I have wanted to beat my 42 minutes for 19 years and this is my first crack at it.

Because, Patti and I are better together.  Patti is an amazing person.  I don’t think I’m that bad of a person myself.  Both of us have accomplished a decent amount on our own, we both have skills that are unique to us and we both have imperfections and problems.  But when we do things together we rock!  I’m not just saying that; we’re amazing…. Really!!!

OK, so in all honesty our weaknesses match our spouse’s strengths in an uncanny way and when we rely on each other’s strengths we are just… better.

Patti and I were talking about this the other night while we were running (actually I talked and Patti concentrated on breathing and managed a “yea” once in a while.  She’s a good listener when she’s running….) We were BOTH talking about this the other night while out running and it came up that she feels that her blog only represents a half of her. Certainly there are things that we don’t share on a blog, this is after all a public forum and we share a lot, but we do choose to share some stuff and not other stuff.  What she meant is that the readers of this blog only get her side of things, and you don’t get mine.  Not that my opinions are all the different, but that sometimes my perspective is.

So we have decided that I will start contributing to the blog and not just as a guest blogger, but under my own name.  Just to warn you, sometimes I’m all surface level, geeky, odd humor, and sometimes I’m deep and philosophical.  Patti is generally somewhere in the middle all the time…. See we complement each other even there.

So as the title says, I’m running for a record setting pace.  I’m not aiming to beat 42 minutes on a 10K; I am aiming at running more, farther, faster with Patti on whichever trail we happen to be on, as long as we are doing it together.

See you soon…

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BTW: As you can see from the picture, my bib number for the run is 2955 which puts me in the yellow zone which is way too close to the front… but if I beat 50 minutes I’ll be thrilled (and a little surprised).