Saturday, April 28, 2012

Reminder: I've Moved

Just a reminder that I have moved. I hope you will click this link and come join me over on word press

Monday, March 12, 2012


Well I have finally decided to take the plunge and move to Wordpress

Please join me over there

Tuesday, March 06, 2012

Forging Ahead

I have been asking myself a lot of deep questions the past several months - along the vein of "Who am I really?" and "what do I want from this life of mine?". Also included in that is - why do I blog and is it a burden or a gift?

I began blogging back in 2006 because I thought it would be a great way to vent and I was trying to save money and not go to therapy as much. I'd love to be able to say that I started blogging because I wanted to help others but that simply wasn't true at that time. I did want to connect with people and I was buoyed often by other bloggers but I didn't consider myself to have anything to offer others at that time.

Considering I only made 3 posts in that first year (and the bill from therapy) my goal of venting and avoiding therapy didn't exactly work out. But I kept at it, though sporadically.  I've wrestled with anonymity and what is for me to tell versus my children's personal information for years. I don't use our names and I try not to post pics that show their faces. And those first few years I did vent quite a bit about school and other issues that weighed heavily on me.

But now what do I want my blog to be about? People and circumstances change. I'm trying hard not to be angry with people and instead to believe (as I want people to believe about my son) that when people CAN do better they will do better.  So I, for the most part, have not been using this space to vent about Social Workers and Crisis Workers and so on.

However,  I want to write more. Writing has always been an outlet for me but lately it has felt like another pressure, another burden. So I decided to sit with that for a while. Why does it feel like a burden if no one is making me blog? Add to that hardly anyone reads it and it should feel burden free. It eventually came to me that I am still very much grappling with my anxiety and depression and everything feels like too much of an effort right now. So I have been getting up each day (when all I want to do is stay under the covers all day) and I make a small list of what to accomplish and for the most part I have been successful. But believe me when I say it takes every last bit of my will power to make it happen.

So I have fallen behind in my contract work, my housework, my personal work, my blogging -but perhaps by putting this out there it will compel me further to keep going.

I'd like to go back in time and post things from early on in the years with C and our struggles to get services and diagnosis. I'd like to post some of my journal entries so that perhaps other families who are feeling lost and alone will not feel so much so.

That's my plan.

Monday, January 23, 2012

Important Ontario IPRC/IEP Info

So the Ministry of Education in Ontario released this memo in December 2011.

The things that it states are really straightforward - many outside Special Education will read it and be left wondering - "This required a memo?" after all, of course ADHD and Tourette's and other disorder/conditions can have an impact on a child's learning. And if a child is experiencing challenges in the classroom we would move to put things in place to help that child - right?

Well, until this memo (and let's face it, long after this memo), many schools and school boards were denying kids IEP's (Individual Education Plans) - sighting that the child did not meet the criteria set out by the Ministry in the form of five categories (Behaviour, Communication, Intellectual, Physical, and Multiple).  They argue that ADHD, for example, does not fit into the above classifications and thus they were not obligated to provide special education services for a child only diagnosed with ADHD (the emphasis on "only" is a sarcastic one because if you have a child with ADHD you know what your child requires to learn and often times it is above and beyond what is in place for them).

But this memo changes that. Or at least it would seem.

I'm eager to see what the schools do in response as parents begin to bring forward this memo and ask that their child be accomodated for his or her unique learning needs. Of course I would suggest that families use this memo to start a collaborative dialogue rather than an "see, I TOLD YOU SO", "in your face" kind of situation.

For our youngest, nothing changes as the school has been AMAZING at putting things in place even though he only has an ADHD diagnosis (once again an attempt at sarcasm).

If this affects you I hope you will leave a comment. I'd love to know if you are able to use the memo to advocate for your child.

Monday, January 16, 2012

Our Journey with Sensory Issues - Part One

I was asked by someone to describe our experience with sensory issues and I figured I would post it here since I have been meaning to write this for quite some time.

In Canada, Sensory Integration Disorder (SID) and Sensory Processing Disorder (SPD), are not as well known as they are in the United States.  Add to that neither one is listed in the DSM-IV (the diagnostic manual a.k.a. 'the bible' for diagnosticians, covers all mental health disorders for children and adults)  and it makes it difficult to get 'professionals' to take you seriously and give you and your child the help you seek.

If you have reached this point and are all "What in the world is this chick talking about?" - well, I could try to go into detail about SID (I'll refer to it as this since it is what is written in the reports that we do have which actually reference a sensory diagnosis for our son) but really there is a vast wealth of information at Sensory Processing Disorder Foundation (U.S. based) as well as   Hartley's Life with 3 Boys (a website and blog of a mom focused on SPD). So please do go to those sites but don't forget to come back here.

When we adopted C he was three and a half years old.  I was (and had been for quite some time) working in early intervention. I had read up quite a bit on sensory issues and techniques for children I provided service to. Information was fairly scarce but luckily we had the book The Out of Sync Child by Carol Kranowitz and Raising Your Spirited Child by Mary Sheedy Kurcinka.

Amazingly with all that personal knowledge and resources right in front of me - it took a while to put it all together that many of the issues we were dealing with individually added up to sensory integration disorder.  Much of it looked like something else (like ADHD) and our days were such frenetic world winds that reading a book or trying to make a plan was far from my grasp. He seemed to be a sensory seeker AND avoider. Loud noises like the vacuum or hairdryer seemed to actually be painful to him and he would cry and beg me not to turn them on. It took us a few months to realize part of the reason he would act out while shopping would be that he needed to use the washroom but hated the toilets and hand dryers in most stores so he would act out so we would take him home. He hated tags in his clothes and it would take him months to adjust to wearing pants and socks when the weather turned cold. He didn't like hugs or tickling and just touching him on the arm made him recoil and even sometimes yell out "YOU'RE HURTING ME", which was always so much fun in the middle of a store or parking lot. But he would also run into people and bounce off them, never seemed to register pain and never seemed to get dizzy.

On one occasion early in our adoption - he fell off the top of the monkey bars and landed on his face before I could catch him (he had poor protective reactions as well). As I rushed over to him I could only imagine what damage had been done - he stood up and caught his breath and much to my amazement just resumed his activities. We soon learned that he would only stop and register pain was when it was accompanied by blood - even then we weren't sure he was actually registering the pain but rather the visual let him know he  should be in pain and he would act accordingly.

At school he was constantly roaming the room, touching things and people. He licked things and put things in his mouth when he should have outgrown that behaviour at a much younger age.  He had his fingers in his mouth so much that for most of Junior Kindergarten he wore thin gloves to try to help his red and raw fingers heal.  He never seemed aware of where his body was in space resulting in huge issues particularly when lining up at school (which you do a lot of as a Kindergartner). You can imagine that kind of behaviour wreaks havoc in a classroom with even the most experienced and understanding of teachers.

Those early years were hard. We were discharged early from preschool services (long story for another day) and the next step services were saying they had nothing to offer us. School Health Support Services who provide Occupational Therapy to school children were very clear that they would only look at fine motor and daily living skills (like dressing, eating) and they would not provide any sensory therapy or assessment. Without more published studies and Evidence Based Practice, Sensory Integration Disorder (also called Sensory Processing Disorder) was not seen as "legitimate" in our community. I tried to find a private practitioner but at that time came up empty handed.

So we trudged along on our own - piecing some parts of the puzzle together on our own. I did figure out that deep pressure seemed to calm him and he began to allow us to give him "Big squeezy hugs" (bear hugs) that typically resulted in visible calming of his whole body at least for a few minutes. We kept a supply of "real fruit" fruit snacks on hand to reduce the need to chew on his fingers or mouth non-food items. He couldn't seem to get the hang of chewing gum (and still can't without swallowing it) so we probably looked like we were training a family pet - constantly pulling out a fruit snack out of our pocket and popping it in his mouth.

In late 2005 we were finally seen at the Child and Parent Resource Institute (CPRI) in London Ontario regarding C's Tourette Syndrome. As part of the overall treatment plan created with us during our first visit to CPRI, C was referred for Occupational Therapy for both fine motor issues and a sensory assessment. In August 2006 we began the OT assessment and to this date it was one of the most helpful, eye opening services that we have received as a family.

To Be Continued . . . .  Part Two will be up soon:  How Does Your Engine Run?

Thursday, December 08, 2011

Therefore I Share

Mental Illness is nothing to be ashamed of.

It is not the fault of the person dealing with it.

It is hard for all involved. The individual, family, friends .  . .

Mental illness is nothing to be ashamed of

How many times have I said that in real life, on Facebook, on my blog?

I tell my son this all the time. I tell him that his Bi-Polar and OCD and other illness/disorders are a pesky part of him but they do not define him and they do not make him less of a person. I tell him that he is my hero - having so much on his plate yet getting up each day with a smile on his face. And when it is a bad day (or week) I tell him that's ok too. He's entitled. Eventually he will get up again after we help him fight off the demons that haunt him in his head.

Mental illness is nothing to be ashamed of.

Just like people are not ashamed of cancer. People are a lot of things at Cancer - scared, mad, frustrated, devastated, determined to name a few. But people are not ashamed of cancer.

I suffer from depression and anxiety.  It's been mostly under control for many years now but you can read a little about previous times I was struggling here and here and also here.

A few weeks ago it got really bad really fast. It seemed to hit me out of no where. My brave and amazing husband and friends made sure that I got to the hospital. I stayed for 3 weeks. While I was there I was almost successful in hanging myself with a sheet. Yes it was that bad. I was not myself. I was over run with irrational thoughts and overwhelming emotions. I thought the world would be better without me. I thought that my pain, that feeling of deep emptiness, would finally be gone if I was dead. I felt so very very desperate.

I was and still am battling a mental illness. I probably always will in some way.

I share this because I need to not be ashamed. I cannot teach my son and society to accept mental illness if I am ashamed and keep this as a secret. Therefore I share.

Friday, December 02, 2011

Celebrating the "lasts"

Many times we celebrate the "firsts" in life (first tooth, first steps, first day of school) and we let the "lasts" slip through our hands and memories. Probably because at that moment we have no idea it will be the last time, there is no memo, no handbook that says "WARNING - LAST TIME HE WILL HOLD YOUR HAND IN PUBLIC"

My youngest, J, is very aware and although he is very affectionate at home he long ago stopped letting me hug and kiss him in front of the school.

Today he came out and was excited to tell me about the play his class is putting on. Like it was the most natural thing in the world he slipped his hand into mine. I realized almost immediately it felt almost foreign. When was the last time I had held his hand?

I almost said something in the heat of the moment. But I quieted myself and tried to enjoy the brief walk home. Wondering at what moment he would realize what he was doing and slip his hand away. We made it to the bottom of the driveway with his hand lovingly in mine.

I willed myself to enjoy every moment, just in case. You never know when it might be a "last"