So the Ministry of Education in Ontario released this memo in December 2011.
http://www.edu.gov.on.ca/eng/general/elemsec/speced/2011CategoryException.pdf
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 23, 2012
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?
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.
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"
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"
Friday, November 25, 2011
Injustices and being complicit
I often work hard to make sure I don't waste time on guilt . . . I lump it with regret, a natural human emotion but not very helpful or productive. I prefer to try to be forward thinking, spending my limited resources on finding solutions and making change for the better instead.
With that said, I am overwhelmed with guilt, remorse, regret and deep seeded anguish over what has happened to my son and what is happening to hundreds of other children in my home community at the hands of treatment centres. I hope to be able to make changes and I have removed my son from that environment. A newspaper story about one of the treatment centres in town has brought it all to the forefront today.
I grapple with what I will do. Do I go forward with our own story of the other agency, who from the description of the agency in the paper is doing even WORSE things??? If I do it puts my family at risk in ways I cannot go into on this blog. But I have to do something.
Years ago I bore witness to many injustices to vulnerable people at a place of employment. I took small stands back then but my complicity still haunts me to this day.
I will have to do something moving forward - for all those children whose parents don't know or who don't have parents. I'm just not sure how to proceed at this time.
With that said, I am overwhelmed with guilt, remorse, regret and deep seeded anguish over what has happened to my son and what is happening to hundreds of other children in my home community at the hands of treatment centres. I hope to be able to make changes and I have removed my son from that environment. A newspaper story about one of the treatment centres in town has brought it all to the forefront today.
I grapple with what I will do. Do I go forward with our own story of the other agency, who from the description of the agency in the paper is doing even WORSE things??? If I do it puts my family at risk in ways I cannot go into on this blog. But I have to do something.
Years ago I bore witness to many injustices to vulnerable people at a place of employment. I took small stands back then but my complicity still haunts me to this day.
I will have to do something moving forward - for all those children whose parents don't know or who don't have parents. I'm just not sure how to proceed at this time.
Monday, November 21, 2011
It's All Too Much
I know I haven't been posting lately, but does the old adage - "no news is good news ring true"? Yes, No, I'm not really sure.
The boys themselves are doing well. I'd even go so far as to say the are flourishing
Me, not so much.
I'm in a deep dark confusing and often lonely place.
But I am getting help. I am reaching out and trying to let people in. I have sought professional intervention.
I so badly want to write and to pour out my heart and soul but it just isn't meant to be at this moment.
But I'm still here and that counts for a lot right now
The boys themselves are doing well. I'd even go so far as to say the are flourishing
Me, not so much.
I'm in a deep dark confusing and often lonely place.
But I am getting help. I am reaching out and trying to let people in. I have sought professional intervention.
I so badly want to write and to pour out my heart and soul but it just isn't meant to be at this moment.
But I'm still here and that counts for a lot right now
Thursday, September 01, 2011
Cue the Music
School in our part of Southwestern Ontario (Canada) starts next week.
Cue scary shark music ending in a shrill shriek
But wait . . . Usually by now I am saying hourly prayers under my breath and wishing desperately that I had a vice that would get me through the last few days of summer vacation while AT THE SAME TIME wanting nothing more than to curl up in the fetal position in a dark room in order to get away from the impending doom that is school for my boys.
This year . . . I posted a thank you to summer in my Face Book status. I posted lots of awesome pics here on my blog. Sure there have been bumps in the road this summer. A few were pretty significant and usually would have brought me to my knees. But this year - we are all managing.
Last night I went across the border to do some shopping with my very good friend and we stopped at the Olive Garden (which we no longer have in our home town, sigh) to absolutely stuff ourselves eat and enjoy each others company on this rare ocassion for as long as possible. Amidst fits of uncontrollable giggles that left my stomach hurting and tears running down my face - we commiserated. We talked about school and what we were doing to prepare for this year as all four of our boys have unique learning challenges at school.
I admitted to her that I haven't done any of the information packages and personal introduction letters to the teachers that I usually have ready in July (lol). I just yesterday had a brief conversation with C's teacher to book a quick visit to school on Friday to ease his anxiety because I figured that was the one thing I can't skip this year.
At that moment I paused from stuffing my face and I said to my good friend "you know, I've given enough of my time, energy, emotions, tears and effort to school. I think I'm done with that for now".
And I meant it.
C is going to have a very strict and loud teacher this year.
I could choose to try and fight his class placement. I could try to get him moved. I could write letters, make calls, write emails, vent on Facebook and call upon all my advocate friends.
I could stay up til the wee hours tonight typing and cutting and pasting and printing and colating information, all the while trying not to be resentful or sad that there would be a strong possibility that the teacher wouldn't so much as crack the front cover on my carefully chosen duotang.
I could find myself lying in the bed, late at night, unable to sleep as I worry about the fact that this Grade 8 for C and he is woefully behind in using his laptop. That he struggles so hard to fit in and might feel rejected and isolated. That next year is highschool and . . . . .
but I stopped myself
I am going to choose instead to be believe that after all these years the people at his school know him and are competent. I am going to believe that C has come so far that he can continue some of the self advocacy that he has demonstrated previously. I am going to believe that the people (peers and teachers) that we know and trust and who know and love our son will look out for him and let me know if something is amiss (as they have in the past). I am going to trust that the Principal and last years teacher chose his class placement for very good reasons and that they have everyone's best interests at heart.
I am going to choose to let go a little. I am going to trust what we have worked so hard to create to do its thang.
And I am resolute in my knowledge that should there be bumps in the road - I know how to handle them. I am bigger and stronger than any of those situations and I am supported by many many people who are also bigger and stronger and we will close ranks around C and help him, and the school, through anything that the universe throws our way.
We have done it before. We can do it again, but only if necessary
Because in the meantime - I plan to keep living and loving my life and doing things like canning 8 dozen jars of spaggetti sauce with a good friend that I just don't see enough of.
I will let some of our hard work do its magic while I dance and live off to the side
Cue party music
Cue scary shark music ending in a shrill shriek
But wait . . . Usually by now I am saying hourly prayers under my breath and wishing desperately that I had a vice that would get me through the last few days of summer vacation while AT THE SAME TIME wanting nothing more than to curl up in the fetal position in a dark room in order to get away from the impending doom that is school for my boys.
This year . . . I posted a thank you to summer in my Face Book status. I posted lots of awesome pics here on my blog. Sure there have been bumps in the road this summer. A few were pretty significant and usually would have brought me to my knees. But this year - we are all managing.
Last night I went across the border to do some shopping with my very good friend and we stopped at the Olive Garden (which we no longer have in our home town, sigh) to
I admitted to her that I haven't done any of the information packages and personal introduction letters to the teachers that I usually have ready in July (lol). I just yesterday had a brief conversation with C's teacher to book a quick visit to school on Friday to ease his anxiety because I figured that was the one thing I can't skip this year.
At that moment I paused from stuffing my face and I said to my good friend "you know, I've given enough of my time, energy, emotions, tears and effort to school. I think I'm done with that for now".
And I meant it.
C is going to have a very strict and loud teacher this year.
I could choose to try and fight his class placement. I could try to get him moved. I could write letters, make calls, write emails, vent on Facebook and call upon all my advocate friends.
I could stay up til the wee hours tonight typing and cutting and pasting and printing and colating information, all the while trying not to be resentful or sad that there would be a strong possibility that the teacher wouldn't so much as crack the front cover on my carefully chosen duotang.
I could find myself lying in the bed, late at night, unable to sleep as I worry about the fact that this Grade 8 for C and he is woefully behind in using his laptop. That he struggles so hard to fit in and might feel rejected and isolated. That next year is highschool and . . . . .
but I stopped myself
I am going to choose instead to be believe that after all these years the people at his school know him and are competent. I am going to believe that C has come so far that he can continue some of the self advocacy that he has demonstrated previously. I am going to believe that the people (peers and teachers) that we know and trust and who know and love our son will look out for him and let me know if something is amiss (as they have in the past). I am going to trust that the Principal and last years teacher chose his class placement for very good reasons and that they have everyone's best interests at heart.
I am going to choose to let go a little. I am going to trust what we have worked so hard to create to do its thang.
And I am resolute in my knowledge that should there be bumps in the road - I know how to handle them. I am bigger and stronger than any of those situations and I am supported by many many people who are also bigger and stronger and we will close ranks around C and help him, and the school, through anything that the universe throws our way.
We have done it before. We can do it again, but only if necessary
Because in the meantime - I plan to keep living and loving my life and doing things like canning 8 dozen jars of spaggetti sauce with a good friend that I just don't see enough of.
I will let some of our hard work do its magic while I dance and live off to the side
Cue party music
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