Books in cages

The week before school started I made arrangements to take C into the school to meet his new teacher and see his class. Being in Grade 5 this year means he is on "the big kid" side of the school. Apparently this is a VERY big deal to C and he seems quite excited. He also was getting apprehensive about never having met his teacher and not knowing what to expect. His teacher, Ms. D., has taught at the school before but had been home with her baby. The day of the visit C was excited to go, I was nervous. I stayed up late the night before compiling a summary of main points about C and some information about his Tourette's and associated conditions. Since the EA's were also going to be new to him I had him help me put together a list of "Do's" and "Don'ts" such as "When I am frustrated, don't touch me" and "give me two choices - never take my choices away". When we got to the school, C happily greeted everyone who, in turn, remarked (as they do every year) about how much he has grown. He made sure to remind everyone that he is going to Grade 5 this year. The principal walked us down to C's class and introduced us to his new teacher. After all his apprehension about the teacher and class, he barely gave her a second look after the intro's and he wasn't interested in taking his picture with her as I thought he would be. Nope, he became fixated on what he termed the "book cage"

he got such a kick out of this corner of the room. I assume it is the "reading corner" and I think he was encouraged and relieved to see that the teacher has a space the kids could just hang out in, complete with a special chair and a bunch of cushions. I think it's going to be a good year.

Loading image

Click anywhere to cancel

My First Meme

Renee at Life with My Special K ´s tagged me for my very first meme, 6 Quirky Things About Me. Ok, let´s see:

1. When I make a PB&J sandwich, I HAVE to put the pb on the bread on the right, jam on the left
2. I am a devoted Coronation Street Junkie (American readers are saying ¨hunh¨?)
3. I exclusively ate pizza with toppings I didn´t like for almost 10 years before I confessed to my husband. I would wait until he went out of town and then I would pig out on ¨my¨ pizza.
4. I over empathize with movie characters e.g. in Transformers I felt horrible for all the innocent people being blown up and having their cars and homes destroyed.
5. I didn´t know how to daydream until I was 17 (honestly I had no clue what people meant when they said that, how did they do it?) and even now I think rather than daydream
6. I really struggled to list 6 (and I only did 5), I don´t think I am really all that quirky - but anyone who knows me who thinks different feel free to leave a comment.

The Rules:

1. Link the person who tagged you
2. Mention the rules on your blog
3. Tell about 6 unspectacular quirks of yours
4. Tag 6 following bloggers by linking them
5. Leave a comment on each of the tagged blogger’s blogs letting them know they’ve been tagged

As for tagging people - I am going to bow out on this part, at least for now. I don´t know enough bloggers at this point to pass it on. If someone wants to take it on, by all means do so. Leave a comment so we can link over to learn more about you.

Are We There Yet

J and I are at my parents, staying overnight and then taking my mom back with us in the morning. Sheś coming for some follow up doctors appointments because for over 7 years she has been without a family physician in her town. So we have been doing this jaunt (3 hours each way) a lot lately because she also doesn't drive.

Usually I bring both boys and I will say honestly that it is not exactly an enjoyable or relaxing experience. C tries hard but he is out of his element. Anytime we are away from home his anxiety shoots through the roof, add to that his excitement to hang out and play with his two cousins (and his ONLY cousins) that live 2 streets over from my parents and he is a ball of pure energy. He is getting better, rarely does anyone get hurt anymore. But I have to be on the ball, constantly nearby, ready to intervene when his OCD and the need for things to be ¨just right¨ threatens to turn physical.

This time, C decided not to come. He hasn´t been sleeping as well as we lead up to school and his OCD is in overdrive. I was so proud (and shocked) when I suggested he might want to stay home with Dad and he answered"yeah, I think thatś a good idea¨. More importantly, this morning as we got ready to leave he STILL thought it was a good idea not to come. I really thought he would have changed his mind.

So off J and I went. I got to listen to J ask Äre we there yet?" over and over and the best was ¨Mom, can you pull over? I´m a little tired of you driving and I want to rest¨. Once we got here all was good. He was embraced by his cousins, 7 &11, and basically I haven´t seen him since. I almost don´t know what to do with myself. How do other parents do it?

The best part? Heś going to have a sleepover with his cousins at their house (usually because of C´s needs we end up with all the kids wherever we are). He is soooo excited and I am happy he has them all to himself for once. They are all playing so nicely and they even made him a wagon to pull his stuffed monkey out of cardboard and other craft supplies. oooooh, crafty kids - I don´t have any of those either!

Itś all good

p.s. sorry for weird punctuation, there´s obviously something wrong with parents keyboard

You Love Me, You Really Love Me!

Mady at Sandwiched Genes was kind enough to tip me off that Mommy Dearest over at The Quirk Factor has bestowed this honour on me.

I am so honoured, my very first blogger award. Of course, this means people are actually reading this stuff and there was something to be said for thinking no one would read my drivel, it felt freeing. Then again, I also would check my blog several times a day hoping someone would leave a comment - disappointed over and over when it didn't happen. A comment made my heart soar. So who am I kidding? I write these because I want people to read them. I don't expect you all to love me but it sure does make my day when someone does.

The rules of the award are:


1. The winner can put the logo on their blog.


2. Link the person you received your award from.


3. Nominate at least 7 other blogs.


4. Put links of those blogs on yours.


5. Leave a message on the blogs of those you’ve nominated.

This could be hard, especially since most of the blogs I read I discovered via Mommy Dearests blog and she has already given them the award. The Quirk Factor was the second blog I ever read, having linked there from MOM-NOS. I love both of their writing styles and feel a sense of camaraderie as we all raise our boys in this complex world.

After much agonizing and searching here are the seven I am awarding:

1. Gretchen's Blog - I find myself thinking about Gretchen and her family even when I am not at the computer. She writes so openly about some of her struggles and she is so accepting of who all of her children are. I also love her comment about these mom's who can do "everything".

2. Kristina at From here to There and Back - a fabulous writer who's insight into her son and what he needs is heartwarming. She is working on a book and I, for one, cannot wait to read it one day.

3. Kyra at This Mom - aside from loving to read about parenting her son Fluffy, is it geeky for me to admit that I love her candor (read: swearing)? I am always so cautious about things like that in my own life and blog, I love that she lets loose and tells it like it is.

4. Bea at Bub and Pie - for so many reasons above and beyond her writing. Partially because she is also from Southwestern Ontario, it's nice to read and understand some one's references so completely. Also because I admire her decorating skills! There's also the fact that her kids sound so sweet!

5. Drama Mama at Like A Shark for dishing it like it is, keeping it real and keeping me in tears of laughter.

6. Renee at Life with My Special K's - she has 4 young children (very cute kids), one with Leukemia and Down Syndrome, AND her husband is in the military AND she keeps up with her blog - need I say more?

7. MOM-NOS - She probably has tons of these awards but I just have to, she started this obsession for me. I learn from her thoughtful posts and sometimes what she doesn't post teaches me just as much if not more. Her posts are thoughtful and respectful of her son and what he might not want shared with the cyber world.

If you haven't already, head on over and check them all out. Word to the wise, make sure you have lots of time as quality posts are a plenty.

There - all done! Who knew accolades could bring on so much work.

Road to Independence

Lots of other bloggers are posting about school preparations and trepidations. I have been doing what I do best - living in the world of denial. I did the bare necessity of school shopping a few weeks ago and I called the school to make sure my youngest actually starts Kindergarten the first day of school (some schools have staggered start for Kindergarten). Other than that I have tried not to think about it.

If I do I start to have pains in my chest. Funny thing about nagging worries, even when you are not actively worried they sneak up on you, start to affect you. I have been having more migraines the past week or so and I have drank a lot of Pepto. If anyone brings it up though I act confident and nonchalant about the plan for this year for C.

He is going into Grade 5 (a whole issue all on its own - for me that is) and will be on the "other" side of the school - out of the primary wing. He will have a teacher he has never met before. The EA he had the past 3 years was supposed to have moved to a new school this year. He is anxious and worried about her. I found out last week he will also have a new Learning Support teacher and today I found out he will have a new French teacher.

Today we visited his classroom and met his teacher. She seems very nice and I am very optimistic about his year in her class (more on that later). The principal came by to tell me she still doesn't know who one of his EA's will be but the afternoon one will be an EA that has been at the school for years but never been C.'s EA other than to fill in at times. What I am really concerned about is that we are back to the school pushing for C. to have 2 EA's (one a.m., one p.m.) because they are worried he is becoming too dependant. People PLEASE! How many times do we have to go over this? We have been down this road several times before, with the same Principal! I love this woman but why oh why does she think this will work? And why would we do it now when his anxiety is so high, his OCD is in high gear and there are so many new things and people to adjust to? Doesn't she know the saying - the definition of insanity is trying the same thing over and over and expecting different results?

Here is part of the letter I wrote and emailed her today (I'll spare you the whole diatribe):

I wholeheartedly respect that you view C. as an individual with so much potential for independence. Thank you for that. I understand that you are of the opinion that too strong of a bond with one EA is hindering C's independence.

My view is that in previous years when he has only had one EA all day, that individual was able to build the required safe, trusting and successful relationship with C. By building this relationship it allowed him to feel secure, successful and independence could then flow from that. Last year when C. went back to having one EA towards the end of the school year, his grade 4 teacher made concerted effort to encourage C.'s independence and build his self esteem. I still remember the day she called me to tell me how wonderful he was doing, he was managing his emotions so much better and he was doing things like walking to the bathroom on his own and returning to class safely and appropriately. That was because he felt safe and secure. For C, as with any child really but just magnified in C's situation, he needs to feel safe before he can be more independent.

I would put forth that there are indeed other ways to increase C's independence. For example, having the EA give C less verbal instruction (possibly having a book with a visual schedule inside that would show C step by step what to do next); sending him on short errands to the office; having him help a teacher other than his own with a task; and so on. I believe that by linking him with more of the school community on a very brief, situation specific scale we could gradually increase his success which in turn would increase his self esteem and independence.

In all of this though, we must keep in mind that C has very real and quantifiable challenges that might preclude complete independence free from any additional support from an EA. As his parents we would love to see small, incremental steps taken toward setting him up for success. However, given his needs, I don't think we should view his collaboration with an EA as a dependency but rather as an adaptive accommodation - it is just one piece of the puzzle in making him successful and supporting his learning at school.

I very much want this to be a year of continued growth and independence for C. I've written about it before on here and I have had ongoing conversations with the school. As I told the Principal though, we have differing views on the road to get there. I have no doubt she will join me on my road soon but I left that part out when I spoke with her :-)

Walk the Walk

For the most part I think I am a fairly rational person. I like to mull things over, ruminate for a while before I comment or commit to something. I am usually afraid to offend someone or overstep my bounds. I am all too aware that words, once spoken, can not be taken back. However, for quite some time I have been mindful of the fact that there are those situations where I really should speak up. Those times whereby my silence would be taken as implicit approval or agreement. If I don't speak up I spend days replaying it in my mind, quick come backs coming to me now - when it is too late to say or do anything. For the past several months I have begun to hold myself accountable, forcing myself to speak up no matter how uncomfortable I am. No matter how much my voice wavers and my hands shake. Funny thing is, this only happens when I feel I have to state my feelings, defend my point of view. If I am "defending" the honour or rights of someone else I don't seem to have the same difficulty.

Yesterday I attended an educators conference. I am not an educator. I gained admittance by being on a task force that was partnering with a school board for an. The head of the task force had mentioned that our members could attend, for free, the daytime symposiums for the educators. I figured, free information, why not? At the very least I could use some of what I learned when doing my advocacy work with families trying to navigate the education system. I signed up for an all day learning opportunity about children with ADHD - which was to include practical tips for accommodations in the classroom. GREAT!

Once there I seriously began to reconsider my decision when in her opening words the presenter, an educator and self proclaimed parent of a "difficult kid", referred to "these kids" as "PIA's" (pronounced "pee-ah's"). Hmmm, that was an acronym I had not heard before. Maybe you all are more worldly than I am, it stands for "Pain in the Ass". My blood began to boil as this woman moved into discussion about how important it is for teachers to establish clear "community agreements" within their classroom from the very first day. Stressed in all of this are the terms such as "attentive listening", "right to pass" and "mutual respect". Hmmmm, has this woman lost it? Here she is trying to reach these teachers and enlighten them about building a community within the classroom so that every student feels safe and supported and will not be ridiculed by teacher or peer. But what, it's ok to have a bad day and walk around calling one of "these difficult kids", a kid like mine (cause believe me, he can have VERY difficult days) a PAIN IN THE ASS?

So I admit - I stewed for a while. I saw glimmers of hope - she was REALLY challenging these educators on how easy it is to make accommodations. It was obvious she was an experienced and knowledgeable educator. There was some great discussion and dialogue going on amongst the teachers and support staff about how to make accommodations work in the classroom and on taking ownership for making inclusion work. Wonderful ideas and strategies were flowing. As a parent and advocate it was wonderful to witness and I began to relax. I began to think that perhaps her proclamations of "PIA" were all about hooking her audience while she lead them to why no kid should be referred to in this way. Just maybe she was purposefully empathizing with them, joining them in the trenches, and then she was going to lead them to a whole new respectful place where we don't make derogatory remarks about students.

We broke for a lunch break and I shared the situation with a few of my fellow task force members who had come for the lunch time speaker. From their reactions I could only conclude that I was not overreacting - how could I try to convince myself this was something innocent just to avoid having to confront it? I couldn't. I walked back for the afternoon session knowing I would need to address it if she didn't somehow backpedal and right this wrong. When I realized the other speaker would be doing the entire afternoon address I began to doubt my plan to confront the issue. However, when this woman stood up to interject another reference to "PIA's" , I locked in my resolve to address the issue.

When the day came to an end, I waited for an opportunity to get this woman alone. I knew that making this public was not appropriate. I started out telling her what I did like about the day, I really wanted her to know that I was not just some disgruntled parent. I really wanted her to hear my words and deeply understand why it is not ok to call our children, especially her own child, a pain in the ass in a room full of people. I pointed out that it seemed highly hypocritical to stress community agreements of safety and mutual respect and then violate children's rights in such a way. She tried to explain her reasoning, which indeed did include trying to let the teachers know she has been in their shoes. I did not back down. Yes, I said, you have been in their shoes and I would hope that being in this position today that you would have shown them how to walk the walk of compassionate, skilled and rational teachers, not people who would use those shoes to beat up the children who so desperately need help and understanding.

We all need to walk the walk, including me. Which includes not only choosing to use respectful words when speaking of others but speaking up when someone is disrespecting others.

Edited to Add: I would be remiss to not mention that this woman did say that she was glad I came and talked to her and that she did understand what I was trying to convey. I have hope that she will choose her words and terms more carefully.

These Three Years

Dear J
I know you think you are a big boy, and you are getting bigger but you will always be my baby boy. I cannot believe that it has been three years since you came home to us, your forever family. We are so thankful to all those who came before us and cared for you until it was our time to be your mom and dad and big brother. I laugh every time I remember back to our first meeting - you sitting in your highchair eating, food all over your face. You looked so wary of us - but within thirty minutes you were climbing all over A., a man you had no way of comprehending was going to be your dad - forever and always.

You have filled our lives with so much laughter and a few tears, mostly from all the laughing but from pride as well. When you laugh, that deep belly laugh, I cannot help but join in. That probably explains why you get away with so much - how can I scold you when I'm too busy laughing? You are so outgoing, saying "Hi" to every person you meet and making conversation with various customer service people every stop we make. You fill this house with noise and activity from the moment your feet hit the ground every morning (EARLY every morning).

You are such a good little brother - doing your share of revering your brother one minute and making sure to annoy him the next. You are so desperate to do the things your big brother can do and every day you dare to dream that you have magically grown and closed the five year age difference between you two over night. Such an imagination you have! Music is your "thing" right now and while your father and I hope you maintain your desire, we will pray that your Elaine way of dancing is just a phase.

When I look at you I cannot believe how quickly the time is passing and how old you are getting. I am trying hard to put the work aside and just spend time experiencing and enjoying life with you - there is so much you can teach me, especially about living in the moment. I promise I will try harder to embrace your energetic spirit and to be more patient as you crash and tumble your way through life. Believe me when I tell you I have a hard time remembering what life was like before you came and I hope to never experience it without you again.

We love you J., Happy Gotcha Day

Loading image

Click anywhere to cancel

An Open Apology to Kirk

Dear Kirk

I am sorry that I did not stick up for you more in the first grade
I am sorry that I didn't ask you to come to my house to play
I am sorry that you didn't get to live with a forever family
I am sorry that the kids at school were so horrible to you
I am sorry that they called you "Kirk the Jerk"
I am sorry that I do not remember your last name

If I could have it all to do over
. . . I would have played with you at recess when no one would, EVERY day, not just sometimes
. . . I wouldn't have let go of your hand when we were walking home and other kids were coming
. . . I would have shared my Jos Louis with you on the field trip and sat with you on the bus
. . . I would have been your best friend

I am glad that I kicked those boys HARD with my Cougar boots that day they were bullying you after school. I wish that there wouldn't have been a need for anyone to have to protect you - I wish people could have been nice to you and that grown ups would have made the world a safer place for you.

I think of you often. I feel much shame and sadness for the things that never were and all that should not have been. When I watch my son as he struggles so much to fit in, I often think of you. I will do better by him than what was done for you.

I am sorry and I hope life got better. I hope you found someone to sit with on the bus and who would share their lunch with you.

Dream a Little Dream

My husband and I used to joke, particularly at the end of a really harrowing day with C, that at least when we became parents he was already sleeping through the night. I think if we had added sleepless nights into the mix with all that was going on - we all would have toppled over and our quest for the elusive happy and adjusted family would have imploded. What I didn't realize at the time was that my own body was already robbing me of sleep. Insidiously and gradually, undiagnosed sleep issues were robbing me of REM that, low and behold, I actually need to function.

I have always snored and I have always fallen asleep at the drop of a hat. Put me in an idling car and I am out like a light. As soon as my head hits the pillow at night I am dead to the world. It drives my husband crazy. What also drives my husband crazy is my snoring and gasping for air. I knew I snored - LOUD! It has been a source of embarrassment for me my entire life. I make jokes about it to defuse my embarrassment as I had been lead to believe as a kid that it was just my cross to bear. But the gasping for air was new for me, or so I thought. I kept meaning to see the doctor about it - I really did. I knew I probably had sleep apnea but instead of taking the time to get it checked out I pushed it to the bottom of my huge to-do list.

I threw myself into being a mom, a wife and working with kids with special needs. Sure I noticed that I was drowning in paperwork that never seemed to get done, that the housework was largely left undone for days at a time (ok, weeks) (OK! months). So I went to my doctor - secretly convinced that I had some horrific disease that was robbing me of my energy and that I was going to die. Funny how I didn't think to tell my doctor that I snored or that I thought I might have sleep apnea. All the bloodwork and tests came back negative. So I joined a gym, convinced I was just lazy. I dragged myself there for several weeks, wondering when I was going to start getting that endorphin rush I remembered from my work out stint in my early 20's. It never came and my work out clothes have been sitting unused in a bag for a VERY long time.

Early in the New Year my hubby threatened divorce if I didn't do something. Then I started waking up with a bad headache, often a migraine, every morning. I was waking up everyday feeling like I had a hang over, with none of the fun benefits the night before. I went to the doctor and he immediately made a referral to the sleep clinic. I know many people who put off going for a sleep test because they don't want to wear the "fighter pilot" mask if they have sleep apnea. I put it off because invariably when I think I have a "simple" issue it blows up in my face (all stories for a different post).

I went to the sleep clinic in late June. It was . . . interesting. You would think a sleep clinic would have sound proof rooms. I am sure my snoring kept the light sleepers awake and the conversations between the insomniacs and staff jostled me repeatedly. The best though was the guy in the room beside mine, we shared a bathroom. Dude, if you are reading this - I don't think you have sleep issues - I think you need to go to a urologist and cut down on your fluid intake. Every hour on the hour the guy was in there peeing like a race horse. So NOT the sound I really want to be woken up with. Anyhow - I made it through that night and woke up with a killer headache which lead me to believe I had "performed" exhaustively that night.

3 LONG weeks later I get a call from the sleep clinic. A nurse there wanted me to call back and get my results over the phone. I figure anytime a doctor gives results over the phone it means that nothing is wrong. WRONG!!!! Turns out I have Central Sleep Apnea, not the Obstructive Sleep Apnea that the majority of people with apnea have. So, my brain forgets to send signals to my muscles to breath. Hmmm, yes that sounds like something I would do. I wake up anywhere from 44 to 88 times on average an hour. No wonder I am tired.

So now I have a CPAP machine that blows air up my nose at night - and yes I look like a fighter pilot. If I talk while I am wearing it I sound like Darth Vader. Very cool according to the kids. People keep asking me if I hate it and saying they could never wear it. Honestly, I would wear or do almost anything at this point if it meant getting a good night sleep and waking up refreshed. Since starting to use it I have had far less headaches in the morning. It is going to be a long road because Central apnea is not as straightforward as the other kind.

Last Friday I went for my second sleep study. It was a horrible night. I kept waking up gasping for breath - which is what the doctor (and my hubby) say that I have always done but this time I was actually conscious of it. It felt like I was suffocating every 30 seconds or so. I thought the night would never end. But then, sometime around 5 a.m., the sleep tech was able to get the pressure at an optimal level for me and I did something I haven't remembered doing (and probably haven't done) for a VERY long time. I dreamt! It was wonderful and after I woke up I had such a longing. This whole sleep issue crept up on me so gradually that I never stopped to realize that the wonderful, powerful, dynamic dreams that I used to have had stopped. I want them back.

We all need to dream don't we?

Kiss and Tell

Yesterday I called my friend, who always babysits my youngest when I am working. I wanted to let her know I would be picking him up instead of A. She told me that J's teacher took her aside at home time to let her know there had been an "incident". Immediately my stomach plunged and I thought "oh great, here we go". C had so many difficult times at that age - I can't help but worry.

From what she had been told, J got caught kissing a girl in class - a classmate was holding the girls head for him so he could kiss her. I thought at first it was just one girl, turns out he sees himself as the class cassanova and kissed at least four girls before the teacher put a stop to it.

Luckily the moms of the kids involved are understanding. One mom told me that she believes her daughter actually started it by kissing J on the cheek which then led to all the other kissing. I was relieved that the parents all seem to be on the same page about the whole thing. It was innocent and a good teaching opportunity about how to behave at school and who it is okay to kiss (e.g. your family).

One of the moms and I had a good chuckle as we watched our kids in the playground before school today and I suddenly recalled (and shared with her) chasing boys and pushing them down in the playground in Kindergarten and kissing them while they recoiled with horror. I never got caught and none of the boys told on me. The big difference here, my son doesn't think girls have cooties. He looked at me at bedtime with his eyes wide and dreamy as he said "You know mom, I know I'm not supposed to but kissing is fun".

Oh man are we in trouble.

Please Bare with Me

Okay, not that I actually think many people are even reading my blog . . . but if someone out there checks this out periodically - I apologize for its haphazard look right now. I started messing around with the template and now I have no time to fix it and make it halfway decent again. What with the new job, housework, training a new support staff and trying to get ready to go out of town this coming weekend - I'm a little busy.

I promise I will fix it soon. I really want a nice looking blog that reflects my personality - I'm finding that hard using the templates on blogger.

Fresh Start

Well, I did it. I handed in my resignation at work at the beginning of March and April 4th was my last day. It was a long time coming but ultimately it was a series of events culminating in this day that made me finally take the plunge. We spent 7 years engaging in various infertility treatments then copious amounts of time and energy went into the adoptions of our two boys. After all that I couldn't justify dropping my kids off at school crying (them, not me - well not usually) every morning because I was stressed about trying to get everything done in a day.

Yes, I am fortunate to have a wonderfully supportive husband. Yes, I am lucky to be able to spend more time with my fabulous sons. I could barely contain myself from cartwheeling out the doors of the office building on Friday. Never mind that I don't know how to do a cartwheel. I couldn't wait to finally tackle the laundry pile, to run to the school on a moments notice for C without having to cancel appointments and worrying about how to play catch up later. And the paperwork - who creates a job where just by clocking in every morning you have suddenly become behind in your paperwork - I used to dread the phone ringing because then I would have to "document" the call! Whew! I couldn't believe how light I felt leaving the office Friday, the weight of the world off my shoulders finally!

Have I mentioned that I started a new job on Monday?

A Team Player

I spend a great deal of time trying to balance my desire to save and protect my son and trying to let him forge his way in life. It's not an easy task for any parent with any child but with a child with special needs, it can become all consuming. We had a meeting the other day at the school (which I will try to post more about later) and for the most part it was good. I advocated for my son, at times very strongly, and it felt good. What didn't feel so good was the realization that there were a couple of people sitting at that table that really weren't part of our "team". They don't, at least right now, "get" my wonderfully spirited boy and I worry that their demeanour and approach to him will do more damage.

With the one individual, she has little contact with C but could negatively impact his school experience because she is a "professional" from the board office whose philosophy on how to "deal" with my son's behaviour just doesn't match my own or most of the rest of the team either. She's the "expert" though so I am wary and will be on my toes when it comes to her involvement. The other person has recently begun to have direct contact with C every afternoon, which is the time he struggles the most. I believe that she believes wholeheartedly that she knows what she is doing and that what she is doing will prevail in the end. I know my son, I know all the people that have come before her. She will not prevail but in the meantime I worry that my beautiful C will deteriorate and suffer more because of this.

I need to be clear here. My C is struggling in huge ways right now. I know it cannot be easy for the school - it's not easy for anyone, especially C. I do not for a minute believe that these "non team players" are in any way causing the issues we are dealing with. I do believe that they are not helping the situation and in fact, may be making this whole thing a whole lot bigger than it needs to be. The good news in all this is that I have found some peace and comfort in knowing that I have a good overall view of what is going on and I will pull him from school or fight higher up if I need to. I will NOT let anyone punish him for things that are beyond his control right now. My last week of work is next week, if need be I will keep him home. I will not allow him, me or my family to be held hostage. That resolve feels good. I hope it won't come to that.

Houston we have lift off!!!!

I received a call 20 minutes ago from the school - I almost didn't pick up, I thought for sure it would be some sort of "problem" and with it being Good Friday tomorrow I really didn't want to deal with it. But, I picked up. That will teach me to be such a pessimist. It was his teacher Ms. M wanting to tell me what a wonderful week C had. She talked about purposefully giving him "missions" to do such as going to the library to pick something up for her and how successful he was and how proud she was of him and he was of himself. Which is exactly what I have been thinking lately but I thought for sure they would fight me when I brought it up again at the school conference we have scheduled for March 27th.

I am ecstatic! When I told him I had just talked to his teacher his face began to fall but I quickly told him how proud his teacher was and he just beamed!

What a way to start the Easter Holiday.

Coming of Age . . . 40 that is

In our family we go on a roadtrip every March Break (I think our American friends refer to it as Spring Break?). The bad weather led us to rearrange our trip but we were thankful we didn't have to cancel. First we headed to Greenville, Ohio to my beloved Kitchenaid store where we discovered they had held over some wonderful sales until the end of March because of the bad weather. Then off to the Children's Museum of Indianapolis (FABULOUS!) and other site seeing and shopping. Today we headed to Louisville Kentucky. We are on night 4 of a 5 night trip. All is going amazingly well.

Until this morning . . . when I discovered a grey hair sticking up maddeningly out of the top of my head, just like Alfalfa. It's not my first grey hair and it won't be my last but it honestly was like it was taunting me for pete's sake!!!! Then I was playing my husband's Nintendo Ds Brain age game and it tells me I am like someone in my 40's - I'm 34! And then we go to Walmart where I delight that I can buy beer along with my other sundries (in Ontario, Canada where I live you have to go to the "Beer Store" or an LCBO). Low and behold I am walking to our van with my beer and bags only to see on the receipt in LARGE print at the bottom "All customers appearing to be under the age of 40 will be asked to provide proof of age by showing proper ID". Great - so now I don't even look like I am under 40?? I seriously wanted to go back in and show the cashier and say "oops, hon, don't you want to card me?". My husband stopped me, the last thing he wanted was for me to drop to my knees sobbing and begging to be carded.

Amidst the Madness

I picked C up at school on Wednesday. When I got there he was bouncing in and out of the Principals' office. My heart sank and I admit I wondered if I would be able to get out of the hall without being summoned into her office to "talk for a sec" (translation: your son is in BIG trouble and I want to rip your heart out). I stood there wondering if I will always have that gut reaction where I want the floor to open up and swallow me every time the principal walks toward me?

As they walked toward me though the principal looked, peaceful, not frazzled. C gave no indication of being upset as he darted for the front door and I followed (yes, I did think it would be the perfect excuse to not have a long conversation). She followed us and tentatively said " I wanted you to know c had a rough afternoon. He climbed under a table again and so I climbed in there too". I honestly think all I could muster in response was "oh. . . " and she continued, she told me how they found a way to have a conversation and he shared some things he hadn't shared with anyone other than his father and I. As she was telling me this, both my boys were climbing on snow piles and acting like maniacs. It didn't all register with me until later that night.

The Principal climbed under a table and sat with my son and had a heartfelt conversation about why he is sad.

Amidst the madness of late comes this wonderful moment. In so many ways we are so blessed.

Battening Down the Hatches

I know I have not posted in over a month. My apologies. Honestly it was partly due to our youngest son, J, going in for a tonsillectomy and ending up with some complications. That was a crazy and worrisome time but it all ended well. Gave me some insight, just a little, into what parents with chronically ill children must have to contend with. All my prayers, blessings and encouragement to all of you who do.

Lately though, I am in a funk. Maybe it's partly the weather. Maybe it's that I hate my job. Maybe it's that I just cannot seem to get motivated to do anything - I cannot even get motivated enough to be stressed about getting further and further behind in my paper work at the office. Sigh.

Mostly though I can tell I am laying low and gathering my strength. I should have seen it coming. Obviously my subconscious did and looking back, I can see the signs that I was battening down the hatches without realizing what I was doing. C is spinning out of control again. His compulsions and obsessions are leading the way. we are trying a new medication, who knows if its working or making things worse. This time of year is always difficult for him. We don't really know why but always during lent and usually waning after Easter. Last year he was threatening to kill himself. Actually his words were "Sometimes I think about using a knife, like this, to cut myself". He was making himself a sandwich which was a new thing for him to be doing (it was just a butter knife but still). While I willed myself to stay calm and matter of fact I asked "Oh, why would you want to do that?" and he answered almost as matter of fact "so I could bleed until I had no more blood and then I would go to heaven to live with Jesus and everything would be good there." He was 8 years old and there was no doubt in my mind that he really felt that way. He was struggling and hurting so bad that he thought dying sounded like a better option than living his life the way it was.

I know I haven't gone into too much detail about his diagnosis and his needs in my blog. It seems so exhausting and complicated. I work with exceptional children every day and have for my entire adult life. Honestly I have only met one or two other children who are as complicated as my son. He is in that frustrating place of being super sensitive and bright and yet struggles to make connections in both learning and socialization. People who meet him briefly often think I have exagerated his needs. He can seem so "together" and insightful. Yet he can fall apart at the drop of a hat. Then those same people think I am making excuses for him and his poor behaviour. Apparently I am an enabler. Even my own husband has accused me of that at times.

Those same people should have witnessed the scene yesterday. The frantic text messages from C's worker who cares for him for 2 hours after school on the day I work. "You need to come home - it's bad". She had never sent such a message before. Needless to say, as soon as I saw it I floored it home. As I drove I called her (preach safety to me later) and she filled me in. He would not get in the house. He was running back and forth across the street. She had the phone poised in her hand to call 911 as she was certain he would be hit any moment. I could tell she was scared, he had never shown this side to her before. Few have seen it aside from my dh and I. I got home and you could see from afar that he was completely wound up - when he is like this even his pupils dilate so that his eyes seem like huge black pools. I could not get him in the house. At one point he bolted (Damn that kid is FAST) but I was able to coax him back - it was almost like dealing with a frightened animal. Once back in the house he fell apart, sobbing from the bottom of his heart. Yelling "You don't know what it's like not to have friends". I got him into his room and we cuddled on his bed. I thought he was calming - I was SO wrong. I though he went to sit up, he bolted. He's fast. He got to the front door before I did and without his boots or coat or anything he went running down the street. No way am I going to be able to catch him. I call A and cryptically tell him what's happening as I am getting my shoes and coat on. He offers to come home. I catch up to C at his school just down the street. Luckily a couple of kids were there and I was able to encourage them to come toward me and he followed (again, doesn't that sound more like a frightened animal than a 9 year old boy?). I am trying to gear myself of for a struggle to get him home. As soon as I put my arm around him he melts against me sobbing "My feet hurt, it's really cold, I should wear boots". The rest of the evening was tumultuous but we got through and we were able to keep him safe. I'm kind of shell shocked. What are we supposed to do now and how do we keep him safe?

Child's Play

I tiptoed down the stairs, moving swiftly into the kitchen, out of sight but peeking around the corner to witness this amazing turn of events. Two boys, heads close together, searching through a bin of toys and making a plan.
"I know, you be Darth Vader and I'll be Harry Potter and pretend you are trying to kill me and I put a spell on you" says the older boy.
"Wel-l-l-l okay" says the younger brother as they move quickly to set up their scene. Light sabre versus wand action commenced, Darth Vader was quickly defeated and the boys moved onto a new plan of action.

I waited for it, the sharp exclamation "HEY!" followed by smacking noises, crying and outright rage. It didn't happen. I waited for the "That's not fair - M-O-O-MMMMMMMMM!" and the ensuing mad race to get up the stairs (where they think I am) to get to me first to tell on the other. It didn't happen. Was it possible that they were actually playing? Did I just hear J make a suggestion for their play and C actually said "okay" instead of overriding him, or worse, yet, hauling off and smacking his brother.

Who are these boys and can I keep them?

It's all about Rear Ends - A week in Review

Last weekend A finally gave in and called a plumber to come Monday. Our ancient toilet had been "rocking" when you sit for quite some time. Living in a house of males, who only have to sit sporadically, meant that my requests to have it taken care of ASAP went unnoticed. When the leak appeared that finally made A leap into action. After many calls from the company to reschedule the appointment time (I knew the original small window of between 10 a.m. and noon was too good to be true) the plumber finally showed up 5 minutes before I needed to leave to go pick C up at school. I had REALLY wanted it taken care of while the boys were at school - anything out of the ordinary, particularly strangers in our home, really throw C for a loop.

Knowing things might not go according to MY plan (do they ever?) I discussed the fate of our old toilet with C the night before and reminded him on the way to school that when he came home we should have a new toilet and the plumbers might still be there. We also had to talk about the fact that we were getting a new toilet. We knew this would be an issue for C. As the years go on he has developed more and more rigidity around toileting and using other people's bathrooms has been an issue the past two years.

The plumber and his assistant were very efficient and helpful. When C first got home from school they kept saying "oh no, he's ok" when I was trying to get him upstairs to watch TV and keep him out of their hair. Funny how after he got into full OCD swing of things they were no longer trying to stop me as I attempted to redirect him. After all the work was complete and the workmen gone home, C kept going in and just looking at the toilet. He held out for as long as he could and then asked for me to help him. Basically he just needed re-assurance that even though the toilet didn't "feel right" it was all going to be ok. That night at bedtime we talked a little about the new toilet and he said "It will be ok mom, cause I know you'll be there to help me". Ah, melt my heart.

Then on Wednesday I uncharacteristically decided to go home on my lunch hour and for my troubles I got rear ended by a lady that proclaimed "Honestly I didn't even see you because I was looking in my rear view mirror!" WTF? Anyhow, though my neck was a little sore the next day there was very minimal damage to the car so I could take a deep breath and be thankful that it wasn't much worse.

So that folks was the highlight of our week

The [REAR] End

The Horror of it All

A few years ago I threw in the towel and stopped taking C to get haircuts. I was tired of all the stress and disastrous results. Looking back I can recognize now that the experience put C into sensory overload and it was doomed before it began. A few months ago C started to express interest in having a hairstyle other than what his Dad could do (which was basically a buzz cut). So we agreed to try going back to the place our family frequents. Before we went I decided that it would be best to explain (briefly) to the stylist about C's Tourette's and to make it clear that while he would do his best, it is not his fault should he need to move. C was fine with this plan. The experience was amazing, the stylist was very patient and C stayed fairly still (well, for HIM it was still - compared to other kids he was probably moving like a live wire).

Fast forward to last week, when C needed another hair cut. We waited for a "good day", meaning very few motor tics and no excess anxiety or worries. Unfortunately, the two stylists that were there last time were off and C did not want to come back another day. The stylist that took our name has cut my hair before (and seems sweet) and the place was empty so I figured all should still work out. C's name was called and he headed for the chair when, BOOM, a different stylist pops out of the back room. I take one look at her and the frown on her face as C goofed around getting into the chair and I wanted to bolt.

Instead, I took a deep breath and say "I just want you to know before you start . . ." as she pauses, water bottle held in mid air " that he has Tourette's which is . . ." and before I can finish she gets this horrified look on her face and she BACKS AWAY from C. Luckily he was still playing his Nintendo DS so didn't notice. I had a split second to decide, be all upset and offended or push through and hope that I could enlighten this woman. So I started again, as though she hadn't done what she did " . . . it's a MOVEMENT disorder". She moved back but still looked bewildered. I took another deep breath and tried to act all nonchalant. "Basically it means that his body moves in ways he cannot control, so while today is a good day he might sometimes move unexpectedly - you need to know this and you need to know that it is not his fault."

Finally the haircut was underway, C did a good job, with a little bit of lecturing to the stylist about not being so rough (it was then that I remembered she had done my hair once and WAS rough about it - ooops). He did a nice job advocating for himself, even I hadn't said anything when she was rough doing my hair. I bit my tongue cause there is still that old fashioned mom in me that wants to chastise my kids if they say anything to anyone that might even be remotely seen as rude. He wasn't being rude, he was being factual. I then focused on being thankful that he hadn't swore at her when he said it (we are battling that issue at home a lot right now).

After the cut the stylist confided in me that she thought when I told her Tourette's that it was some sort of communicable disease like scabies or lice. What she didn't do was apologize, but, whatever. I told her that the horror on her face told me exactly what she was thinking but that I was glad she now understood. Her face went red at that time so I knew it was all sinking in. When it came time to pay I still tipped her extremely well. She had done a nice job on C's hair and I didn't want to act petty and not do what I always do. She was very shocked by the tip and thanked me profusely. I'll admit, I do hope that helped to solidify this new information that she has about TS, and maybe, just maybe the next time she's in a similar situation she won't back away.

Baby no More

My baby turned four years old on December 31st. Like that wasn't hard enough,yesterday I gave him a kiss on the cheek and as he walked away I witnessed him WIPING IT OFF! sniff sniff - where did my baby go? I wasn't ready for this.

Rollercoaster Moments

I logged in a few hours ago and began this post - it started like this:

"I HATE OCD - I hate that it compels C to ruin a day he has been desperate for weeks to have. I don't know how much more of this I can take, the run ins literally make me ill with anxiety"

C had slept in this morning and I ran around trying to get some housework done. I had invited my friends boys over to play today and was hoping to get the upstairs passable so that I could spend time in the basement with all 4 boys to make sure that C didn't have any "episodes". Honestly, things have been progressively getting better with respect to his moods since we took him off the new medication but I wanted to make sure I was on hand just in case.

As soon as the boys showed up at the door, C was in the oldest boys face (lets call him Jake for the sake of this post). In his incessant, pressured speech C began to list his demands "Jake, you need to stand over there. I am going to teach you Karate" and even while Jake politely declined, C headed off to change into his karate gear. It's important to note that C had briefly taken Karate last year through the community centre so he really does not know Karate. He did get Karate Kid for Christmas and watched it yesterday so that probably was where this obsession was coming from. He kept badgering Jake even with me running interference and eventually I sent Jake upstairs to play as I was beginning to fear for his safety as C escalated. I admit it, I felt frustrated and desperate. In moments like this he is soooooo fixated. In my heart I know the only way to ease the situation is to go around it, not try to tackle it head on. But I have moments of self-doubt at times and sometimes I am tired. After a few attempts to discuss it calmly (there was no calmness going on), I went straight for distraction and suggested Playstation. it was eery how quickly he refocused.

And within an hour I am feeling more like this:
"my son is amazing. He is so patient as he teaches our 4 year old friend how to play Lego Star Wars on the PS2. He even turned on the invincibility feature and pauses mid lightsabre wielding to coach him on what buttons to push.He has come a long way"

Will I ever get used to the roller coaster moments?

Merry Christmas

Merry Christmas to all! We've had a great time in our house the last few days. No guests, no commitments, just lots of family time. Oh, and a trip to the ER on Christmas Eve for J, who fractured his wrist in a seemingly innocuous fall (for him that is). I try to see the silver lining in these things, which came in the form of free parking at the hospital. A few weeks ago we had to go there for J's hearing test and it took us 45 minutes to find a parking spot and then had to pay close to $10.00 when we came out. So all in all it was a good night for it to happen. I don't think it will be the last ER trip for J, in fact I'm kind of surprised that we haven't had more considering his high energy.

From our family to yours - happy holidays

Time to slow things down

On Tuesday my darling C was forgotten at school at the end of the day and it was completely my fault. Not sure how many times our in home worker would have needed to remind me that she could not pick him up this week - obviously more than she did. He was fine, luckily it was a day that they have homework club and some teachers stay later. He was fine, I wasn't. If the school secretary hadn't persistently called (because of course it was the ONE time I had forgot to take my cell phone into our weekly team meeting) I wouldn't have realized he wasn't where he was supposed to be. As I raced to the school I tried to keep it in perspective, telling myself "these things happen". But, you know what, they shouldn't. I think we all have our limits and expectations in life. I expect that no child of mine will reach the end of their long school day only to find out that they have been forgotten. So while I am not beating myself up over it I did decide as I walked into the school that something has got to give, I CANNOT and WILL not keep up this pace and live like this.

Other mom's may be okay with running around like a chicken with their head cut off. Really not an image I am trying to emulate. I don't want my kids to only experience frazzled and stressed mom. Then my wonderful husband came home that night, without even knowing just how crazy my day had been and proclaimed "I was thinking today that maybe you should go ahead and quit your job". I've been talking about it off and on for a very long time. I do love my job but I work in early intervention and it is a very emotionally exhausting job. It was fine before kids, before the depth of what C needed had really sunk in. I even reduced from full time to part time upon return to work from adopting J. All that seemed to do was make me try to fit 5 days work into 3, it never works out.

So my husband is even giving my plan his first bought of blessings and then I balk. Do I really need to QUIT? I will lose the benefits and the pay. Can we really do without it? What if I quit and regret it later? I begin to think maybe what I need is to ask for a leave of absence, protect my job but give myself some time to try to get my house and life a little more in order. Great idea. Only thing is, to ask for one I would have to be caught up on all my paperwork - that might take a while because I can't catch up because I have too much on my plate.

The morning after forgetting C, I walked the boys to school through the 2 inches of snow we had received. The boys were so excited by the snow and I tried to keep myself in the moment but really I was stressed because I was running late and really needed to get started on paperwork. After dropping them off I headed home, put the keys in the car to start it while I cleaned it off. Then I went to jump back in to the toasty warm car only to find that I had locked myself out. Luckily I had my cell phone in my pocket. I called A to come rescue me and then I called my boss. I laughed as I told her what I had done. She answered "you are really not having a good week, are you? But at least you can laugh about it". Well, I either laugh or I cry. So while I stood in my driveway, watching snow melt off my car, I laughed and laughed until I cried. Don't even want to know what the building full of senior citizens across the street thought of my antics.

Progress

I am happy to report that C is back in school. His removal only lasted one day. I anticipated a huge knock down drag out fight with the school. Instead I received an email shortly after I sent mine to the Principal, stating that a plan is in place (sounds like a good plan at that) but of course no acknowledgment of wrong doing or attempt to mend bridges. I guess that will be down to me.

C seems much happier the last couple of days - gee, I wonder why? He got punched in the face yesterday by another child and didn't retaliate. When I asked him about it he told me "Look Mom, the kid was having a bad day. He apologized, I accepted his apology, we left it at school. Case closed". So there! Boy has he come a long way. I think the EA was more upset about the punch than anyone else.

We are really seeing C growing leaps and bounds with regards to planning and problem solving. Case in point, on the weekend he was bored and wanting to call people. He knows we would limit who he was calling so as soon as our backs were turned he got hold of the phone and called a bunch of people, including his therapeutic riding. When A drove C to riding this morning the staff were, for some reason, all surprised to see C. Turns out he called them and left a very composed and professional message that he would not be coming this week. A was stunned (as was I when I heard) and C was upset because I don't think he had thought his plan through. Turns out he wanted me to take him instead of his dad (we alternate weeks) and somehow thought canceling today would achieve his goal. Natural consequences are a good thing, he couldn't ride or work in the barn because they weren't expecting him. Somehow I don't think he'll try that one again.

So, while his logic was faulty it does seem he tried to apply some. And that's a big step.

Give him his dignity!!!!

I admit it people, I lost it. I saw red when dealing with the school yesterday and I told the principal to call C's class and have them get him ready - I walked out the front door with an estatic 9 year old boy with a forced smile on my face. I really wasn't sure what I was doing, I just knew that I could not leave my son in a place that would do such a thing to him. I'm posting the letter I wrote right afterwards to the school so you can better understand (names and identifying info have been removed). For any American friends reading this, please bare in mind that our processes (read: lack of laws) make education very different than it is in your neck of the woods.

Dear PRINCIPAL
I am writing to follow up on the conversation that occurred this morning in your office with regard to my son C and the washroom. On November 13, 2007 I received a voicemail message from Ms. Blank where she simply left her name and asked me to call her. She and I were able to speak on the phone the following day where she abruptly informed me that "C will be using the Senior Kindergarten washroom from now on". I was shocked and explained that C has long standing washroom issues and that his using the private washroom was agreed upon by his team at school when I brought him in at the end of August. I explained that perhaps Ms. BLANK wasn't aware of all this and her response was that the "handicap" (her word, not mine) bathroom is "not for kids like C" and that is why he is no longer allowed to use that washroom. C had shared with me the evening before that he had "peed all over" the toilet and received a detention for it. I asked Ms. C if this was the reason for the change and she indicated this was part of it but that there were ongoing issues (which she didn't expand on or explain) and that his using the SK bathroom would allow the EA to "have more control". I told her, very clearly, that we were not in favour of this plan and that we did not want him using the SK bathroom.

Last week I mentioned to you PRINCIPAL that I wanted to set up a meeting with you to discuss Ms.BLANK's phone call and the bathroom issue. At that time I indicated that I was not in a rush for the meeting as I had no reason to believe that, contrary to our wishes, C was using the SK bathroom. However, I did want to follow up with you with regard to my concerns for the tone of the conversation and the inappropriateness of someone not of C's team calling me and changing plans that had been carefully devised with his unique needs in mind. I intended in that meeting to discuss these issues to in order to avoid future incidents. Following my conversation with you in the hall, however, C made a comment at home about having to use the "baby bathroom" at school and this led me to discover that he had, in fact, been made to use the SK bathroom. I attempted to call the school to speak with Mrs. M (who is his LSST and seemed the appropriate person to discuss this with) on Thursday and Friday of last week, however, she was away. This is why the discussion occurred today.

Forcing our nine year old son to use a washroom that is designed for four and five year olds and housed within the Kindergarten room is inappropriate and degrading. When I explained to you this morning that C views this move to the Senior Kindergarten bathroom as a
punishment you agreed and said "well, yes it is - he peed all over ______ (CHILD's NAME REMOVED OUT OF RESPECT FOR HER PRIVACY) velcro straps that are used for her toileting". I admit I was astonished that you would agree with the wording of PUNISHMENT and that you could not understand why I felt so strongly that C not be forced to use a toilet that is too small and is inappropriate. Punishing a child for actions directly related to his disability is in direct violation of his human rights. C himself has shared with us that he does not like to go to that bathroom as it is "for babies" and with his OCD issues around toileting this is having a detrimental effect on him. Forcing him to use the SK bathroom is a violation of his rights and an assault on his dignity and we cannot stand by and allow his self esteem to be so blatantly eroded. I removed him from school today as we cannot and will not stand by while he is actively punished for his disability.

As you are aware, we have been asking for a written toileting plan for several years now as concerns with C in the bathroom are long standing. All I wanted today was assurance for you that C would not be using the SK bathroom. I understand that a longer term plan will take some time and I am confident that you will include us, his parents, as part of that planning. This is why C and I came to the school on August 30, 2007 to try to problem solve what might be an appropriate bathroom for him to use that accommodates his unique toileting needs stemming from his TS, OCD, ADHD and learning disabilities.

It does seem that there has been break down in communication between Mrs. BLANK and members of C's current school team. I understand that my insisting that C NOT use the SK bathrooms, effective immediately, was a surprise to you. This is unfortunate as I believe I was very clear with Mrs. BLANK during my conversation with her on November 14, 2007 that we were NOT in agreement with this plan and did not want this to occur.

We are confident that this matter will be addressed in a timely fashion so that C may return to school a fully integrated and accommodated 4th grader with his dignity and self worth intact.

The Alphabet Soup of Diagnosis

I think we have reached an impasse. I am really struggling with what to do. On the one hand I refuse to be beholden to diagnosis, I don't want my child prejudged or held down by man made labels. I try to tell myself that the letters that exist after his name are already enough for a 9 year old, do I really want to add more? For what purpose? As it is we had a school meeting a few weeks ago and the Special Education coordinator was new and I spent five minutes just listing the various diagnosis and "issues" - all the while trying to start with my sons strengths and being respectful of all his wonderful qualities rather than making him sound like a walking DSM-IV

So here is the situation - when C had neuropsychological testing a couple years ago it showed that he had "multiple learning disabilities". Actually, it really said "what best could be described as multiple learning disabilities" or something to that effect. I won't rehash the whole experience but lets just say we have never really understood what that meant. We were not given specifics about which specific learning disabilities he has. Fast forward to Grade 4 and I am being told that he is reading at grade level and his Math is just slightly behind (not sure that I agree with the math but he is making steady progress). His writing is behind but considering his "below first percentile" in the Occupational Therapy testing and that he just got his computer this past September, he's doing well. I knew at the time the testing was completed that no one had a crystal ball and he was so young that we had to interpret the results with caution (even if the administering Psychologist didn't).

Everyone agrees that C has made huge academic progress and we are all delighted. Why then can I not just sit back a relax. Other parents grappling with the same issues will understand. I cannot sit back because there is soooooo much more to be done. C is still not allowed to eat lunch with his class. He "sometimes" gets recess and truthfully, he has no real friends. More and more he is struggling to understand social interactions. He just doesn't interact the way that "typical" kids do. He talks to people assuming that they already know what he is talking about, he dominates conversations or juss walks away when people are talking to him. He is enamored by a classmate and has made her feel extremely uncomfortable by trying to give her presents, staring at her and yelling "I love you" across the playground. He comes across as selfish and self centered and I know this is not true. The relationship between he and my husband is more strained than ever. Today he (C, not my husband) had a meltdown in the middle of Walmart, complete with punching me in the back and rolling around on the floor. Who is this child and why is it that this doesn't seem like just LD's or the OCD, or the ADHD or blah blah blah. Something else is going on and I am really thinking that we need to know.

"Just call me Detective"

C tends to take things and hide them. He does this for any number of reasons - his OCD, attachment issues, need for control, a combination of them all. We've tried many things and really it's not an issue if he wants to eat food, why then does he have to take it, take one bite out of it and then hide it? He's not overly sophisticated at the hiding thing either. It might take him months of getting "caught" in one hiding spot before he moves onto a new one. Honestly we just don't put much energy into looking anymore, although we probably should. It's usually A that finds the "stash" (can you tell he's the cleaner one in this household?) and it drives him crazy.

Well, the last few days J is finally earning his stars as an annoying little brother. He's obviously been watching his older bro and has now started to tell on him and give away his secrets. Hmmm. Never occurred to me to ask the little guy. Today J is still home sick and after lunch he asked for some candy (I know, but it's a throat infection, not the flu) but I couldn't find the bowl. I started looking all over and finally threw my hands up and said "sorry, I can't find it". He jumped out of his seat and yelled, "I know where it is" and raced into the basement. A moment later he called for me and I went down to help him extricate the bowl from the hiding spot C had found for it. Since then he has also brought me a video game and a pop tart (1 bite taken) from a hiding spot in their shared room. When I thanked J for his help, his response with his hands on his hips and a wide stance, "Just call me detective!"

Just a little respect

Lately A and I have been discussing how to give C more freedom and responsibility while keeping him safe and not setting him up for failure. He basically has supervision the entire time he is awake. We live 100 metres from the school yet I walk him to and from everyday and when at school he is with an adult at all times. The first few years of school C went into the yard before school with all the other kids and came out with them at the end of the day. To my knowledge he ate his lunch with his class in Grade 1 and had recess. Not sure exactly how it came about but now in Grade 4 we are fighting to have him out at recess and to eat lunch with his class. He goes straight with an EA in the morning to the "games room" before school. This situation has bothered me for quite some time as I believe in TRUE inclusion and this just flies in the face of it. We've been working on it, trying to get things changed and slowly they are. We have a big meeting about it in 2 weeks.

A few days ago J was refusing to get his coat and shoes on for school so I sent C on ahead, watching him from the sidewalk and he did fine. He was so nervous and kept looking back over his shoulders but I could tell he was proud at the same time. When I told dh that night he thought that was great and added that when he drops C off at school after therapeutic riding he just lets him out of the car - I've always gone in with him.

Fast forward to today - J is sick again which sends everything topsy turvy. This afternoon I decided rather than bundling J up and exposing everyone to his germs, that I would call the school and ask that C be sent home with me watching from the sidewalk. Our school secretary was not there today and when I explained to the replacement there was a long pause and she says "well, would he be in a class right now or with an EA"? I was taken aback by the question, it's 2:00 in the afternoon for pete's sake so I answered "well - he better be in class!". In my head I'm thinking "oh yeah, we believe in integration, so much so that it's not unusual for kids with EA's to be out of class for no reason". So she says "Let me go ask, can you hold?" . I'm standing there thinking - what do you mean you are going to go ask????? What, just because there is an EA he suddenly wouldn't be capable of doing this? I mean - I AM the mom, right? I found myself wondering what I would say if she came back and said "no". She came back and said "She said that's fine" and as I hung up I found that my heart was really hurting - since when do other people get to dictate what's ok for my child and to not even think twice about it? How is this respectful of who HE is??? What child at the age of 9 wants to be constantly guarded and never let out of an adults sight? One of the things everyone keeps talking to me about is getting C to take more responsibility for day to day things. Don't we then need to respect him and give him just a little bit of freedom then???