Another Beginning

So, I guess I took the summer off, eh?

Wasn’t planning on it, but it just turned out that way. Life has been so busy and it doesn’t really show signs of slowing down any time soon.

Today was our first day back at school for all 4 of the bigger kids. Geli’s in Grade 10. Xani’s in Grade 9. Jeremy started Grade 7 and Josiah started Kindergarten. Judah doesn’t want to get left out of anything and so….well, he just joined right in with us. (Forgot to get the girls pics….will have to do it when they get home today….oooops!)

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Siah wasn’t exactly thrilled to have his “first day of Kindergarten” picture taken. Just keeping it real, people. Just keeping it real!

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Once I let him go back inside and get his DSi…..which is what he wanted. I was able to grab this shot where at least, he is looking in the general direction of the camera and sort of smiling.

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As far as first day’s go…..I think today was a pretty good one.

Jeremy did a great job reviewing some of his last years stuff and we ploughed through a ton of stuff with Josiah. I can’t wait for a few months to be able to see how far he’s come. We’ve got a fairly hefty reward incentive thingy with stickers and a goody box and all that jazz going on……in an effort to convince him to “stay focused on the actual activity at hand”, and I’m really hoping that soon we will be able to phase that out or mostly out.

Not surprisingly, Jeremy is quite nervous about what he may or may not remember and so I’m planning on doing a bit of review this week to “prove to him” that he is actually as smart and competent as I say he is.

We did manage to get out for a “Recess” and took a walk along the trails by our house. We picked a(nother) full tray of blackberries to freeze. (Jeremy will eat frozen berries like they are candy and so I’m saving up as many as I can get my hands on.)

We made it to lunch time, made it through lunch and now that the baby is sleeping, we are about to start a section of Arts and Crafts…..I think we are gonna do some leaf rubbings. Jeremy picked some up on our walk……We’ll talk about seasons and the leaves changing colors and falling….and it will all tie into Josiah’s Science Lesson for the day.

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I am hoping that I’ll be able to carve out a little more time for myself now that we are back into a “routine”. I am really throwing that word around lightly here, but I’m confident that we will get there…..right? Positive thoughts! Positive thoughts!

How was YOUR summer? I’ll get to mine in the next few posts or so…

How has your September started off? Busy? Regular? Quiet? Slow?

How I wish mine was quiet and slow……how I wish!!!!

Foundations

This is my view right now…

Schoolwork

And my other view…

Playing nicely

It looks very calm and peaceful and for one second it is….and then chaos erupts as we learn to work together. It will come. I am certain that we will all learn to work with, beside and together, but until then…..it’s interesting, to say the least.

We have decided to homeschool Jeremy for the time being.

There are so many factors that went into this decision and it was not a decision that was made lightly.

I feel somewhat conflicted about this decision and yet I believe that it has the potential to be the best thing for Jeremy.

We are going to be working with him on a bunch of foundational stuff. Not just math, reading and science….but we are working on keyboarding skills, organizational skills, typing skills, social skills and so much more.

Yes, there are moments of panic when I wonder what the heck I am doing, but somewhere deep inside of me under all the noise of the fear and dread that I might be messing my child up is this still small voice that says that we are doing the exact right thing for Jeremy at this moment in time.

And when I choose to listen to that voice….I have peace.

And so I’m going with the peace.

I figure that we will work through today. And there is a good possibility that tomorrow might look very different from today or….today might work SMASHINGLY and we will carry on with the plan from today.

I don’t know.

I don’t know if we are going to do this for the rest of this year, or for grade 7 too. Will we continue on for Grade 8 or will he join the public school system for High School?

I don’t know. At this point we are just working day by day and will see how this works for us. We have a goal…..

We want Jeremy to be the MOST SUCCESSFUL person that he can be. We want him to be well rounded and a contributing member of society.

Yes, he has things that our society deems are limitations, but I believe with everything in me that Jeremy has every capability of being a HUGE SUCCESS! We believe that he has the ability to learn all the skill necessary to be able to accomplish any dream that he has. He may need some coaching and he may need some creative help, but I believe in him.

We are working on foundational stuff that will help to set him up in an incredible way for if and when it’s time for him to go back to public school….

At this point, we are taking things day by day…….although I’m nervous about it all, I’m also very excited.

I’m looking forward to seeing Jeremy grow and become the amazing man that he is destined to be.

You Rock!

Thank you for your comments and e-mails and Facebook messages.

We have appreciated each and everyone.  It’s great to have so many different perspectives and to hear different ones experiences.

We haven’t made a decision either way.  I’m so conflicted but in the mean time…

The school has gone to bat for Jeremy and is showing through their actions just how much they care for him.  The Vice Principal called me yesterday and asked if I was okay with her talking with his class about respect and if I was okay with her using Jeremy as an example.  I said that it would be okay.  I figured that if it got worse….then we’d pull him.  If it gets amazing better, then YAH!

She called me this morning and talked about what steps the school is taking.  They did talk with the class about respect and about harm….about not harming other people with words or actions.  They also spoke with a few other classes (some of the children bothering Jeremy are in other classes) about the Quebec Teen who was bullied.  I really hope that the outcome is compassion as opposed to derision.

The school really seems to be taking this whole situation seriously.  I have to admit to a whole bunch of guilt in not dealing with this before now…this is the third year that Jeremy has been complaining about the same group of kids.  Obviously Geli was the highest priority last year, but still…..

The Vice Principal mentioned that Jeremy seems less stressed today than he did yesterday (we ran into her when we went past the school to pick up some of his work) or the day before and this is a good thing.

He slept so good last night and actually slept in this morning.  I really do think that the day off really helped to calm him down. He hadn’t been able to get to sleep and was waking up earlier and earlier stressing about school.

On top of him calling home stressed about being bullied, he’s also been calling home saying that his meds aren’t working or wondering if he forgot to take him meds….Yesterday he had no problems focusing when it was necessary.  I actually think that the stress of everything was causing him to be so distracted and was hindering him from being able to focus.  So far, I’ve had no calls home and I’m expecting him home in about an hour.  The no calls home is a very good thing.

I don’t think that this situation has magically resolved itself, but I do hope that we are headed in the right direction.

And my baby just woke up and so I’m off…. have a great rest of the day!

 

Routine & Advice

Well, today was the first full day of school for our older 3. Angelica and Alexandra are in High School and Jeremy is in Elementary School in Grade 6. Siah and Judah are at home with me.

It seems odd to me that I’ve got such a HUGE spread from my 1 year old to my oldest in Grade 9; but that is what happens when you’ve got a 7 year spread in between the 3rd and 4th child.

I am SO looking forward to getting back into a routine of some sort. There is something just so comforting about knowing what to expect and when to expect it. The past 14 months have been anything but routine. While I normally look forward to September and the newness and routine that it brings, I find that this year, more than ever before, I am craving the comfort that routine brings.

When the older kids headed off the school this morning, the two littles and I headed out to the grocery store. It’s never “fun” taking the kids shopping, and this morning was no better; but it was different. Different because this is a NEW SEASON…..and I have a NEW PERSPECTIVE. It’s amazing how a life threatening disease will impact you both negatively and positively.

I’m looking forward to doing things with the boys. I’m looking forward to establishing new routines and to the give and take of learning. Them learning how to behave in different situations and places; and me learning to read them and to know when and where to take them and at which times…..it’s a whole season of learning for everyone.

The shopping trip today would have been infinitely better if Judah would just stop screaming. He has this unbelievably ear piercing shriek and he kept screaming over and over and over. The people around us would put their fingers in their ears, I’m assuming to stop the ringing…..it’s that bad! And I’m not sure what to do? How do you tell a baby to stop screaming? My current method is to firmly tell him “no” and to gently cover his mouth to stop the screaming. I’m not interested in smacking or flicking and he doesn’t take a soother. He’s only 14 months old and……..? Yah? Anyone? Anything? He’s been doing it for a while but it has never bothered me before; but then I’ve spent the past year mostly at home and so, I didn’t really think anything of it.

I think he learned it from his older brothers. When they “disagree” on something….there tends to be a bit of shrieking; and while I can talk to Jeremy and Josiah, or put them on time out, or send them to their rooms…..it’s a little different for a baby, no?

So, what says you? Any advice on the shrieking? And what do you think about routines?

An Almost, Not Quite, Sort Of Normal Day

The baby is upstairs sleeping and seeing as he slept for a grand total of 10 minutes this morning as opposed to the hour he has been doing – I’m really REALLY hoping that he sleeps for a while….I’d love 2 hours to make up for the hour that he missed this morning, but even an hour would be AWESOME.

Josiah is quietly watching a movie while he snacks on his lunch.

Geli has actually gone to school. I was really nervous about that this morning, so I’ve done lots of praying for her. Her counts were just above the border of her being allowed to go to school and it’s so important that she believe that she “BELONGS” at school that we told her she needed to go. She is finally feeling better. The effects of the steroid have mostly worn off and aside from being tired because we’ve recently had a few too many late nights in a row…she’s doing pretty good.

My house is tidy and mostly clean, thanks to the help of an AMAZING woman.

I’m eating the MOST delicious oatmeal cookie and needing to write out a list of things that I absolutely MUST get done this week. That sounds all big and important, but really I need to write out a grocery list and a list of things that I can do to clean the house while holding the baby (in the sling)….ya know things like wiping the window sills or washing the windows, folding laundry….just easy stuff!

Okay back to those DELICIOUS cookies that I was talking about.

I had a craving for Oatmeal Cookies a while ago and while most Oats are “contaminated” (I dislike that word, it’s so “evil” sounding) with wheat, you can buy guaranteed gluten-free oats and so I did.

Oatmeal Cookies

I googled Gluten-Free Oatmeal Cookie Recipes and read through many MANY links and decided to go with this recipe. (If you read my last few posts, I google quite a bit, if you haven’t noticed. It’s how I come up with the “base” of most of my recipes and get patterns and most of my other useless information. HA!)

I used the All Purpose Gluten-Free Flour Mix from Gluten-free Girl and the Chef and then I started altering the recipe to suit me and my tastes. I only used 2 cups of old fashioned rolled oats and added in 1 cup of unsweetened coconut to make up the 3 cups. In place of the 1 cup of raisins, I substituted 1/2 a cup of cranberries and 1/2 a cup of these chocolate chips. I used Earth Balance Soy free Spread instead of the butter. I did use an egg because I put cranberries in them and that means and NO CHILD in my house will eat these because they have “raisin type food” in them. It was so very clever of me. I made the MOST DELICIOUS COOKIES and they are mine…..ALL MINE!

If my diet weren’t strict enough, I think that I’ve figured out which foods are bothering Judah and I believe……hopefully…..that he is now, actually, on a forward moving, positive trend. We’ve eliminated Gluten, Dairy and Soy….which basically leaves me with nothing left to eat. Okay, so that’s not true at all, but some days it feels like that and so I’ve consoled myself by having little treats like this around the house. I could totally make these cookies dairy, gluten, soy and egg free just by using Ener-G Egg Replacer, but for this batch, it wasn’t necessary – thanks to those pesky little cranberries. But, it’s worth giving up all those foods for my child’s health and if I’m being completely honest….I feel way better eating like this too. The soy is a bit difficult because I use it as flavor in my cooking and I LOVE miso soup, but I don’t believe that it will be gone forever….just until Judah is a bit healthier and his guts become a bit stronger.

Anyway, I made these one evening after the kids had all gone to bed and as soon as they came out of the oven, I tasted one and YUM!!!!! Then I sat down at the kitchen table and ate WAY TOO MANY. I dunked the warm cookies into a cold glass of Almond Milk! These are amazing and I’d serve these to anyone and they’d have no clue they were so altered.

These are not cookie substitutes….these are cookies…real, honest to goodness, chewy and crispy, delicious cookies.

If you have some food “issues”, these could be your next favorite cookie (if you like oatmeal cookies, that is) and if you don’t like raisins or cranberries…just increase the chocolate chips or the oatmeal or the coconut by half a cup.

Alright, I’m off to make my lists….

First Day of High School

First Day of Grade 8Angelica went to her first day of High School yesterday.

I have NEVER been as worried or nervous or consumed in regards to first days with ANY of my kids, as I was yesterday.

It was brutal.

We weren’t sure just how Geli would be feeling and how much of the day she’d be able to do. She had a vocal class first, then English 8, followed by a double block of Science 8 taught in French and then her actual French Language class.

We decided to start with the double block of Science. That gave her a start time of 10:40am. So her day looked like this, she had the first half of Science, lunch break, second half of Science and her French class.

She did really well. Met up with some of her friends and class mates from Alex Hope and all in all she had a really great day. She was even up for a little grocery shopping with me after school. We needed to pick up some lunch snack food. The activity of the day did take it’s toll, and she was in bed and sleeping by 8pm.

We are still working out the process of having her “in” school on the days that she can be and also having her be apart of the Homebound Education Program. Apparently it’s not typical in this school district to do both schooling and homebound….they like you to choose one or the other. We want her in both so that she gets the help and support while she cannot be at school, but also want her to be able to go to school “normally” when she can.

Geli and Jon went into BC Children’s today for the last dose of IV Chemo for this second stage. Depending on certain counts, she may or may not score a transfusion today as well. Well just have to wait and see.

If all goes as planned, she should be able to attend the rest of this week at school.

It is taking a great amount of effort to send her off to school knowing that there are sick kids, and germs and that we are not in control of her situation and choices….this is where faith and trust are so important. This is the first time that we or (my mom) have not been with her since we found out in June……..and,this is just another leg of this journey that we are walking…….we will get through it. One step at a time.

Beauty

First Days

I’m blown away that we’ve made it to the first day of school. That means that we’re in September and wasn’t it only like yesterday on June 16th that our world was rocked….

The whole summer has managed to slip right passed us and here we are staring fall in the face as it comes barreling towards us at full speed.

Xandra and Jeremy are headed to school for…….are you ready for it……..an hour. I was tempted to just keep them home as the excitement of getting up and getting ready is completely chaotic and them to only have them home and “bored” in a hour…..well, that’s hardly even enough time to get a cup of coffee, sit down and enjoy it….throw in a couple of trips to the toilet for Siah, a feeding for Judah and well……so much for an hour of quiet time, eh?

Oh well….there is always Wednesday and let me tell you, I’m looking forward to Wednesday.

DSC_0516Jon and Geli are headed into an appointment at Children’s Hospital. They need to be there for 10:15am and once there, they need to find out Geli’s counts (which at last report were brutal, almost non-existent low and are expected to be even lower), then she has two intra-muscular injections (one in each thigh) of a chemo med, and one IV chemo med and then…….they come home. We are hoping, hoping, HOPING that the rest of this week is SO boring and that we have absolutely no medical updates on how Geli is doing because there is absolutely NOTHING to report on…..that would be the most awesome week ever.

(This is the most recent picture I have of Geli. She is growing up to be such a beautiful young lady.)

She is doing well. She is still a bit nauseous and gags and dry heaves from time to time. This is particularly frustrating as she is on 2 types of drugs to kill the nausea 24/7 and a third one if things are still bad. I hate that she’s on that much medicine all the time but if the alternative is barfing, well….that’s worse and we’ll do what we have to not deal with that. She has pretty much gained back most of the weight that she lost in her two to three week barfing stint.

We finally got a referral to a podiatrist regarding her toes and he was able to help some. He’s been able to alleviate some of the swelling and irritation which helps with the pain, but the biggest concern is with the infection in the tissue surrounding the toenails. With her White Blood Counts too low to be able to fight any infection, she must be on an antibiotic. What we’d really like to see is a miracle with her toenails growing out quickly and all infection gone.

She is annoyed and frustrated with the sheer number of pills she needs to swallow multiple times in a day. Its hard to “have” to be always responsible and take all your meds and drink 2+ Litres of water and eat at all the right times. She is doing well, but we can tell that it wears on her sometimes. There is so much for a 13 year old to be dealing with and really, no child should be dealing with all of this.

School will be interesting this year. Geli is excited about starting Grade 8 and I think that having something to do will be so good for her. She has definitely perked up since we started talking about school and school work and routines and supplies. We bought her an Agenda and she’s even started filling it out already with the dates of her Chemo appts and other dates that she knows in regards to school. She is enrolled in the local High School and will attend when her counts are good enough, but will also do a fair amount of work at home or in the hospital. There is a meeting at the school scheduled for this Thursday and we should have more info after that meeting.

We are in the final stretch of this second stage of the chemotherapy treatment, and the third stage is scheduled to start on Tuesday September 21 as long as her counts are good.

We just keep moving one step forward day by day and hoping and praying for the best. This is not an easy road and I can’t help but think of others who have been through this or similar roads and I feel sick that I didn’t understand or know or realize the extent of what they were going through, I’m so entirely grateful to everyone who is walking along side of us. There are times when Jon and I feel so overwhelmed and burdened and yet we know that we are not alone, and even in our darkest moments of pain and fatigue or when we “feel” alone we know that there are so many (YOU) standing with us and supporting us with your love and prayers and thoughts. It helps us to keep on fighting, and so once again – We thank you!

Schooling / Homeschooling / Unschooling

We have been struggling immensely with Jeremy and need to make some fairly important decisions regarding educating him next year.

Happy Boy

I’d like to ask a few questions and I’d love to get some feedback.

1. How were you educated? (K – grade 12)

2. What do you feel was the most important thing you learned from school?

3. Is there something(s) that you feel that can’t be taught outside of the “traditional education system”?

4. Did you struggle with any learning disability type issues? (Dyslexia, ADD, ADHD, any other LD, etc.)

5. How did you feel that your school experience helped or hindered you?

6. What academic and social skills (that you learned in school) do you use every (or mostly) every day or even regularly, for that matter?

These are just some of the many questions that I have regarding school. I’d love to hear your thoughts and I’ll talk a bit more about what we are thinking about regarding Jeremy soon.

Crazy Week…..I’ll Be Right Back

Well, This has been a crazy week and I’m hoping that regularly scheduled blatherings nonesense programming will resume fairly soon.

I’m headed out to my cousin’s baby shower. She is pregnant with the the first in a string of babies to be born into our family. It’s so exciting. I can’t wait to meet her little one.

The girls have headed out to a pumpkin carving contest….we should hear back later today if they won or not. The prize is $500 for their school’s library.

Geli did win a different contest recently. The kids at the school were challenged to submit an entry that pertained to the Olympics…..2 winners were chosen from the school and those two kids got their designs turned into a flag that lines the streets here in our city…. Geli’s was chosen and two weeks ago she got to spend the morning working with some artists to fine tune her picture into a design suitable for a flag.

It will be exciting to go and see it when it’s hung. They will let us know when and we will go and take a picture of her and her flag.

I hope that your weekend is restful and peaceful and full of fun and laughter.

The Gentleness in His Soul Shines Through

The Gentleness in His Soul Shines Through

We called the new school today to talk with the principal about classroom placement.

We are not asking for a specific class or teacher, as we don’t know the teachers at this school. What we are wanting is the best for our child and the only way to have a possibility of getting that for him is to speak up.

Having a child that requires some extra support has taught us so much about the need for parental advocates.

Whether your child needs extra help in school or specific medical care or specific emotional or mental care…..if your child has needs (what child doesn’t) and it doesn’t seems like they are getting the help that they need – then I believe that it is our job as parents to speak up for them in the situations where their voices either aren’t heard or they don’t have the strength, knowledge or weight for their voices to carry loud enough to be heard.

We have learned that it is SO IMPORTANT to advocate for your child….because if you don’t – it is highly unlikely that anyone else will.

You know your child. You know what is best. And if there is something that you think will help your child, then voice your desires and your concerns and don’t let up until you get a result that is acceptable to you. We have found that once the teacher/principal/doctor or whoever else we are talking with realizes that we are serious….typically they then take the situation a little more serious and give it some extra attention and effort.

Too often the people on the “other side” are just over worked and trying to make the best of a difficult situation. We have found that most everybody really wants to help. We have found that if we can clearly state a)what we are wanting, b)what we see as problematic and c)what we think could be an answer that often times it is so easy to come up with a solution that suits all of us involved. Especially when we bring it all back to the success or health of our child, “personally”. This is where that investment in relationship comes in especially handy.

And today…we took the initial steps toward building that relationship with the principal of the kids new school.

As much as I hate to say it, the two girls weren’t even mentioned.

I hate that we have to mention Jeremy, but I’m more than willing to do it.

And as it turns out, it was a very good move and even better timing….they ARE working on the classes for the fall and there are two grade 4 classes. One is very structured and rigid and the other is slanted a bit more to the creative side of things. He even mentioned that there is more parental involvement and communication needed and required in the second one. We hope this is a good thing and we’ll see. Jon is going to meet with him next week to talk some more.

It’s hard to try and explain your son to someone in just a few short moments. You throw that ADHD label out there like a gauntlet and because there is so much misinformation and lack of understanding on top of such a BROAD scale of definitions, and you never know what someone’s perception is going to be.

We were asked if Jeremy is violent or aggressive and those questions just take my breath away. This boy is so soft and gentle and so funny and kind and so passionate and creative and so energetic and inventive, but he is not violent or aggressive. We are blessed.

The areas that Jeremy struggles the most with are impulsivity and executive function.

And on medication, he is basically a normal boy. He is an energetic 8 year old boy, who also happens to be the youngest in his class (typically) and has had a few rough(er) years. I also believe that he is brilliant (not just a mother talking – the teachers and principal, psychologist, and pediatrician and learning assistant teachers have all mentioned it) and on the meds, his actual intelligence helps him to “fit within the normal range” for his age and grade and actually mask some of the actual learning disorder that I believe he might have.

I’d like to get him assessed so that if there is in fact, a learning disability that he would be able to benefit from the options available to him in High School and college or university.

I just wish that I could show everyone the heart and soul of this little boy….this young man. Everyone that has actually gotten to know him has fallen in love with him. I just wish that none of this were necessary in the first place.

But for now it is, and for now we advocate for him the best that we can.

We want him to succeed and will do just about anything to enable him to do so.

…..and regardless of the challenges that he faces, I believe he will succeed.