November 13, 2008

Dear Heidi,

I am writing because I was touched, relieved, hopeful and excited when I came across the CADDAC website this week. I am teacher and a single mother of 2 boys who have been diagnosed with ADHD and ADD. I am also an adult that was recently diagnosed with ADHD. The more I have learned through research, counselling provided by my family doctor, and 1^st hand experience, the more frustrated I have gotten that ADHD is not considered a Learning Disability.

Although my journey with ADHD began with my own experiences as a child, I did not truly understand ADHD until my son was diagnosed 3 years ago. It has been a very eye opening experience. I found the stories on your website so close to home in many ways… I often say that my oldest son entered the terrible twos and never left them. Since he was 18 months old it has been 1 temper tantrum after another. It seemed that transitions and new learning experiences were great mountains he needed to climb. He had difficulties at daycare; as a matter of fact I remember being told that he was not a “normal” toddler because he got angry when they put milk in his cereal without asking him first. His first year of school was successful, but he found SK very difficult when he had a teacher that did not understand him and was quick to blame him for anything that happened in the classroom. His aggression got worse and he would refuse to go to school.

With an understanding grade 1 teacher he had managed to have a pleasant grade 1 experience even though he was dealing with a lot with my separation from his father. For the most part he has had understanding teachers… but he has had 3 teachers that did not understand him… his SK teacher a grade 2 teacher and a grade 3 teacher. These teachers took marks off for colouring outside the lines, not using punctuation or using capitals in the middle of a sentence. (As you know this are all things that children with ADHD do find difficult)

Although he is currently doing fine (some days are better than others) , I keep my fingers crossed that as he approaches his adolescent years filled with many new learning experiences and peer pressure and the importance of social awareness that he has teachers that will understand him and help him through some of his difficulties. I was lucky enough that my son was diagnosed with a learning disability in written expression so he has qualified for an IEP and assistive technology (alpha smart). However, I can’t say the same for many of the students in my school.

Although there are many wonderful teachers, I can’t say that they fully understand the needs of children with ADHD. I don’t have the time or the space to write all the things that I have heard in the staffroom about children with ADHD. “I don’t want that child in my classroom” “He swore at a teacher that is unacceptable. I don’t care if he has ADHD he has to learn to control his anger.” (By the way when I told my son about this incident… he told me that he must be going through something, so the teachers should be understanding and help him to find out what he is upset about) “The parent of a child with ADHD needs to make sure that their child goes to school with all the supplies. They need to put them in their knapsack” I believe it was the same teacher that said “It is not my responsibility to write down all their homework They need to learn to do that on their own.” “He got a “D” on the test because he did not see the second page. He asked to redo the test and I said no.” These are comments that are made by my own colleagues that have heard my story countless times. Whenever comments like this are made I often try to tell a story of my own experience with my son. My most heart wrenching experience has been with a child that I recently taught.

This child was diagnosed at the age of 6 with ADD. For the most part he has had understanding teachers. He did have one year in which he was not understood. I spent most of last year helping him understand himself and improve his self esteem by giving him strategies to help him with his challenges, including sometimes scribing for him. He is the typical child that I am concerned about. In many assessments if left alone he would appear to be working well below grade level. With scribing and graphic organizers he would produce much more. Informal assessments (age 10) and a formal assessment (completed at the age of 6) demonstrated that he is in average/above average intelligence, although academic achievement without and sometimes even with accommodations is well below grade level. His mother has often commented that she is relieved that he was in my class but she was concerned that other teachers may not go “the extra mile” In my opinion I did not go the extra mile… I did what was necessary to help this child achieve at a level that he was capable of achieving and give him strategies that would help him. It concerns me that these accommodations are thought of as going an extra mile, when they should be part of a teacher’s job.

When I brought these concerns to the school team his parents and I were both told that under the ministry guidelines ADHD does not qualify him for an IEP. As well because he has performed well on informal tests given by the Resource teacher and Speech and Language Pathologist, they did not believe he had a Learning Disability. Subsequently he would not be placed on a list for further Psycho educational testing. It is because of children like this that I feel so strongly that ADHD has to be considered an LD.

Why am I writing this?

• I have experienced first hand how ADHD affects student achievement especially in written output and most importantly their self – esteem.
• I want to share my story with as many people as I can to help bring about change.
• I want others to be aware of what it is like to have ADHD.
• I don’t want to be judged as being ditzy, impulsive, or a bad parent because I have ADHD.
• I want other teachers to understand these children so that I am not the teacher that has the majority of these children in my class.
• I do not want to have to undo damage that was caused to a child’s self esteem because he/she was misunderstood and humiliated.
• I want teachers to be aware that children with ADHD are trying to be good and are not purposefully trying to be disrespectful.
• I want to be able to say my son has ADHD and not have people tell me that it is over diagnosed and over medicated.
• I want to be able to say that my son has ADHD and not have people say that all he needs is a little boot camp and I need to be strict with him.
• I want these children to be understood as having a disability in executive functioning and that they need guidance and understanding not boot camp.
• I want to have access to a support group for parents of children with ADHD.
• I want to make a difference in these children’s’ and their families’ lives.
• I want to help advocate for those living with ADHD
• I want the ministry to understand that teachers DO NOT understand ADHD and if they do not consider it a learning disability that they need to educate them about it.

I have experienced first hand how ADHD affects student achievement especially in written output and most importantly their self - esteemI believe that my personal experiences have made me a better and more understanding teacher. I believe that I have started to help teachers and parents better understand not only how ADHD but other mental/neurological disorders affect the student’s cognitive abilities (output). I also feel helpless and frustrated because I know that even though I have shared my personal experiences and my research with others it makes them more aware but not necessarily more understanding.

I worry about the future of students that have been diagnosed with only ADHD. I don’t believe that I am ready to move away from working with children directly as I can still make a difference at least in their lives… but I feel that there must be more that I can do. I am torn between the need to advocate or educate more and the busy life of a mother with 2 children with ADHD one of which is involved in competitive sports. As any ADHD adult myself, I am overwhelmed with the thought of all the possibilities…but don't know where to begin.

Thank you for giving me the opportunity to share my story through 3 lenses… A teacher, an ADHD survivor of the system (diagnosed as an adult) and a parent of two children with ADHD.

(Name withheld due to the writer being a teacher as well as a parent.)

~~~

June 18, 2007
Hon. Kathleen Wynne,
Minister of Education
Mowat Block,
900 Bay St., Toronto, ON M7A 1L2

Dear Ms. Wynne,

We are asking the Ministry of Education to set up special high school classes for children who learn differently, that is, children with ADHD and other attention difficulties but who are otherwise bright children. This would help to save the future of such children in Ontario and save taxpayers’ money at the same time. It is impossible for our son who is intelligent but has ADHD to be successful in a public school because regular classroom teachers don’t understand ADHD as a medical condition. They do not know the teaching strategies that are effective for him. The regular classroom even with an IEP is an uphill battle for such children and their teachers. As taxpayers, we wish you knew how many wasted resources were devoted to his IEP this year. Not only was it ineffective, but many of the strategies were also emotionally damaging to him.

We would like to give you one example of an ineffective and damaging strategy that the school used on him this year in Grade 6. Our son, Cameron, is very athletic and active. Because he would cover the entire playground and play every sport he could during a single recess, he would have a lot more accidents running into other children than kids who were less active. He would himself get hurt as well. However, as an athlete, he would never complain. However, whenever he bumped into others, they would always complain about Cameron. The school informed us one day that it could not afford to have more than one playground supervisor at a time on the yard. The school administration decided the teachers would “recondition” our extremely active son. The principal said that Cameron was well-intentioned so his “reconditioning” should not be viewed as a punishment. She told us teachers would “recondition” him during the next six to eight weeks so that he would not want to run with the other kids in the yard anymore. He was told he had to stay on the tarmac close to the school and would not be allowed on the grass. The principal kept insisting it was not a punishment. Our son had been with the other boys playing soccer and football since kindergarten but the school thought he could be “reconditioned” to like to play by himself on the tarmac. Sometimes during his “reconditioning”, the other boys would kick the ball to him and he would instinctively run out to play with them on the grass.

At other times, he would forget that he wasn’t allowed on the grass and he would impulsively just run out to play with them. Whenever he was caught playing on the grass, he had to spend time sitting in the principal’s office for disobeying his “reconditioning” order. Some students loved to tell on him when they discovered they could get him into trouble if he played on the grass. He started spending more and more time in the principal’s office and stuttered so much at home and at school that it was difficult to understand him at times. He stopped doing his homework. It was so hard to get him out of bed to go to school in the morning. Finally he started asking us at what age he could quit school. Since February, he has been in a private school with smaller classes and teachers who understand ADHD. These teachers are very effective at motivating ADHD children to do their best and enjoy school. His marks have gone from Cs and Ds to As and Bs. And this is the most amazing story of all: He was so determined to overcome his stuttering at his new school that he worked very hard, winning a speech contest for his grade level in May!

Cameron will have his needs met in this private school until the end of Grade 8. So far we have found nothing suitable for him in Grade 9 and beyond in the public system in Ottawa. We are therefore asking that the Ministry of Education establish special high school classes starting in Grade 9 in Ottawa for children who have ADHD and other attention difficulties. These children would not require costly individual IEPs and resources in a regular classroom with teachers who do not understand ADHD as a medical condition. The children could be together in a classroom where the teacher is trained to understand and teach ADHD children. They would have an opportunity to feel normal when they are with others like themselves and have their learning needs met so they can develop to their full potential.

As Minister of Education, Ms. Wynne, you have the ability and the power to make a difference in our son’s life and in the lives of other children like him. Please start setting up high school classes for children who learn differently because they have ADHD and other attention difficulties, starting in Grade 9. Give these children a better future so they will stay in school. They will repay society in many different ways when they graduate and you will have helped to save taxpayers’ money by eliminating all these ineffective and costly IEPs.


Sincerely, Merrill and David

~~~

August 24, 2007

Dear Kathleen Wynn,
Minister of Education Mowat Block
900 Bay Street,
Toronto, ON M7A 1L2

I am a mother with 2 children, one of which has A.D.H.D. My son is 9 years old and I noticed something ‘different’ from birth. Some of the problems that I have faced are the lack of understanding, resources and support in the community. I have lived in the Toronto region as well as the peel region and I have experienced the lack of knowledge and help in both regions. Doctors that I have encountered will either tell you that your child is hyper and needs more discipline some will tell you that they are ADD/ADHD right off the bat without conducting any kind of testing. I knew from the beginning that my son would need help but I was not willing to put him on just any medication without having him professionally looked at by multiple professionals. In grade one is when I decided to start him on Concerta. I only knew of Ritalin at the time but from research, thought that Concerta (being a time release) would benefit him more.

The first problem I encountered with that was that when I went to fill his prescription, I was told by my place of employment that it was not covered. Ritalin was covered and I would need to change him to that. I found this very odd. If you have a bacterial infection, you do not medicate with the wrong antibiotic, you would medicate with the correct one to treat the problem. Most people would conform to this and switch the medication to what was offered. I fought it. I had to receive a written letter from my doctor to prove why Concerta is better for my son and not Ritalin. This cost me $75.00. What I did not understand is why I would have to go through proving this when this is what my doctor originally prescribed. I understand that certain drugs cost more than others but this is my sons well being. Without the proper medication he would not be able to function ‘normally’ in society.

My son's first year of school is when I encountered more problems. Because of his hyperactivity and being unable to function in the ‘typical’ school setting he was given an educational assistant. This meant that my son worked with an assisant in the classroom…segregated from the rest of the class. He was not included in most of the activities because of his incapability in being able to focus and sit still. My heart cried for my son every night he came home and told me he had to always be by himself. I had numerous meetings with the principal. They tried different behaviour modification techniques. The reward system etc. These things did not work for my son. He was still alone and segregated at school.

I asked the principal why they did not have a classroom for children like my son. I was told that this was the option that they used, to have an educational assistant in the room with him. My son was suspended 3 times for his behaviour. This went on his record. I tried to explain that with my sons ADHD/ODD, he was manipulating them. He did not want to be at school and be separated from everyone else, he was made to feel different than everyone and this was his way of getting out of it. He would misbehave in school until they suspended him. My son was only 6 at the time but he could size you up in a minute and figure out how to get his own way. Why behave when I can stay at home? I think this was the wrong message to send.

Now, a few years later, my son will be starting grade 4 in the Dufferin peel Catholic District School Board. They have told me for the fist month at least and up to however long it will take, he will be attending a behavioural class. He will only be coming to school up until the first recess. This means that he is in school for approximately an hour per day. I am to find childcare. It is hard enough as a single mother trying to find daycare for my other child and pay for it. Now I am to find and pay for full day daycare for my son who is not getting an education because they want to slowly integrate him. I find this unbelievable as this is yet another opportunity for my son to manipulate the system and stay home. He already feels out of place in school and by doing this, he will only feel more out of place. I work an average job and have to pay for before and after school for my daughter which will cost me approximately $500 per month through P.L.A.S.P (Peel Learning and After School Program). Now with my son only going to school for 1 hour per day, a full day program in daycare will cost me $33 per day or $620 per month. I am unable to pay for all of this as I do not receive enough support from the government. They do not take A.D.H.D. seriously. Childcare for my son is more as it requires someone with the knowledge of his disorder to be there for him. This means more money. I will need another job which in turn will leave me less time with my children.

The government needs to understand just how serious this disorder is and the challenges us parents face when trying to find support. Waiting lists for subsidy are long; finding space for my child is even longer. He cannot go into a regular after school program because of his A.D.H.D. yet they do not have anything as an alternative. The government and the school system need to support us. I want my son to be able to function successfully in society and without help; he is going to fall through the cracks. My son is just as important as a child without a disorder…how come the government doesn’t recognize this? We need more support systems, more funding for parents when it comes to childcare for these children and we need the government and the school systems to understand that these children are NOT brats but that they have a serious disorder and feeding them pills is not the answer. They need help with their disorders, the need programs specially designed for them. They learn differently and see things differently…this is what everyone needs to understand and provide support for.

Thank you,
A fantastic parent of a fantastic child

Nicole

~~~

Hi Heidi! 

I have a couple thoughts I would like to share about our experiences trying
to find our way through the short list of helpful services in York Region.

Gosh, where to start.  Let's start with medical.  We moved to York Region in
2000, from Cambridge.  My son with ADHD was 8 at the time.  I could not
work, full time, because no day care provider would have my son, so I asked
my doctor for help.  He sent me to a paediatrician that was no help, and
finally to the Shaw clinic.

We were seen there by a doctor, who listened to my complaints of behaviour,
with no helpful resources to offer, just a few books.  Meanwhile, there was
a child and family services division, that dealt with supporting parents but
I was not referred there, until I had a near breakdown, and was seeing
another worker there for assistance with that.  Even then, the doctor I was
seeing was not responsible for the referral. I go in by chance.... She just
supplies the meds for my son.  No advice or direction, just meds.

In the meantime, I had spent several hundred dollars on, what I thought was
a psycho educational assessment for my son for school, but it was merely an
intake review. Cash only please...no credit cards.   The recommendations
this doctor suggested, would imply that my son, who is very intelligent,
should be slotted into special ed essential level courses, with no chance
for a graduation diploma.  I did not return to him, for the full evaluation,
which would have cost me an additional $3000.00

Then, to school.  I spend most of my days on the phone with school, who does
not call in resources from the community to assist them with my child, (not
that they exist) but insists that I have the answers, and I need to come up
with a way for them to teach my son. When I call an advocate in to assist
me, I am ostracized, lied to about his rights, and waste, yet another year
arguing, while my son's self esteem dwindles, he is repeatedly suspended.
and marks plummet. He is pushed through to graduation anyhow.

On to high school, where the situation is even worse.  He is made to feel
responsible for his LD, and it takes a whole year for the behaviour team to
get in to do their evaluation.  Their recommendations? he needs to leave the
school system, and take alternate education, where he will be isolated,
doing 4 hours a day, one subject at a time, with no access to special
education services, (that is another branch, and we can not have access to
more than one branch at a time).  Again, my request are ignored, the IEP
goes a whole year without being written properly in ministry format, with
helpful goals for my son.  I am told, "we will only be listing the
accommodations for which we have resources". Another year goes by, his first
in high school, he fails English.  IPRC statement is ignored, which calls
for a "plan to close the language gap" that was created when they held him
back in progress, in language because they did not know how to teach his LD.
He and I both hate school. They send in the truancy officer who tell my son,
that it is "a federal offence to skip school, and he can have him
charged"...yes this is the support we are offered within the York Region
School Board.

I'm not telling you anything new Heidi...nothing has changed, I took an
advocacy course, and thought I might open a practice serving parents with
special needs kids.

I recently sent you an entry from a list serve I joined from a US parent
with the same LD as my son, which is Auditory Processing Disorder.  In it,
there are specific measurable goals including therapy to improve his APD
condition, within his IEP.  I was flabbergasted.  While we do not even have
accountability for lack of service to these kids, any old IEP is pumped out,
with vaugities, that will prevent anyone from actually stepping up and
figuring how to teach this child, and monitory the progress....the US, had
therapies that are included in education.  In the US they pay for the same
cognitive reprogramming therapy I pay for, which costs me $3000.00.

I felt compelled to start a Parent Support Group, in York Region, because
the only one offered in York Region, the one I went to was so horribly
unhelpful.  It was being used as a platform for the executive director, who
shall remain nameless, but you know who I mean, to vent. There were 3
parents in the room.

So, where do I turn now? my son is entering grade 10 in 2 weeks, with an
incomplete IEP, no grade 9 English credit,  a new principal, questionably
qualified SERTS, and a Special Education head that will not answer my calls.

Am I looking forward to the new year?? honestly, you of all people must
know. I am doing my best to cope with the stress, and can not work regular
hours because of the constant interruptions.  I don't feel there is anywhere
to turn, and I am tired of trying.  Every time I do, I am horribly
disappointed.  I am exhausted, I have no time or energy for my other child,
and I am considering just pulling my ADHD child from the system, just to get
some peace.  The system that is supposed to promise "education for all" as a
basic right.  Without anyone to help stand up for that right, it's just
allot of hot air, that could have disastrous repercussions for my boy and
our family.


Warm regards,
Lesley 

~~~

Heidi

After the terrible twos started, they never seemed to leave. Nicole was frustrated and angry often. Because I wanted her to adjust well to JK, I sought out counseling, even prior to the beginning of the school year. The counselor was able to help Nicole identify her feelings, but he was a social worker and could not make diagnoses. Nicole’s feelings were mostly described as anger and sadness. My heart was breaking for my little girl. My mother was a teacher before she retired and I had ECE experience. I didn’t understand what I was doing wrong. Within a few weeks of Nicole beginning JK, I began receiving phone calls at work telling me of the terrible deeds that she was committing. I was often requested to pick her up and twice she was suspended – in JK! I was working with the school – doing all I knew to help.

I knew that just taking away privileges wasn’t working. My daughter had an incredibly low self esteem – and I didn’t understand what was happening anymore than the school did. Nicole’s JK teacher told me that she had seen a lot of troubled children, but she had never encountered a case like Nicole. The school told me to have my doctor refer Nicole to a psychologist…When I asked my previous doctor to refer her – she didn’t seem to see any reason for it. She began SK and again she faced a transition, but it seemed very positive to begin with. She did very well in the daycare, which she began the month prior to school start, but when school began everything seemed to fall apart again. Nicole was labeled “aggressive.” Again I began receiving weekly phone calls to pick Nicole up from school. For a second time, I was told that the teacher had never experienced a child behaving like this – so out of control. She was exploding regularly at school and at home. I was at such a loss and I was exhausted and overwhelmed.

My current doctor attempted to find help for Nicole. She sent in referrals wherever she could. Nicole was turned down in some areas because she was too young. Finally, we managed to get an appointment for assessment with KINARK. The doctor there made some preliminary assessments, but stated that diagnoses could not be conclusive until Nicole was older. We took a parenting course through KINARK which provided some, but not a great deal of insight into the ADHD child. We were encouraged to read the Explosive Child – and this was a fantastic help. I began to look at Nicole’s episodes differently – I understood that she didn’t like them anymore than I.

Nicole had been on the Board waiting list for a psycho-educational assessment for quite some time when, nearing the end of SK, I finally decided to pay for an assessment through a private psychologist. Nicole was diagnosed with ADHD, severe anxiety, and an expressive language learning disability. At the end of the year in SK, she began treatment. It is inconceivable to me that I had to explain to personnel at the school – and to the Board Speech and Language Pathologist that a learning disability is possible even though a person has a very high IQ…Well, at the end of SK, help was promised – in the form of a Social Adjustment Class. How was I to know that this simply meant “behavioural”.. I was told that Nicole could have support in the SAC class or no support at all – what was I to do? This was absolutely detrimental for Nicole. There was very little to no focus on academics for the entire year that Nicole was in grade one in the SAC class. Most of the teaching was done by the EA. Her six classmates were all boys, all with behavioural issues, and all older than she. It was perhaps the worst year of her life.

Also at this time, she was dealing with the transition from the in-school daycare, which she had been asked to leave for losing control one to many times, to an in-home daycare. The one saving grace was that the woman providing the in-home daycare was eager to learn about and understand Nicole. She dealt with Nicole appropriately and had few problems. She supported Nicole, set out clear rules, and warned her of transitions…. When Nicole was frustrated – she didn’t engage…which are the same principals we use at home. …Simple, right? Evidently not. By the middle of grade one in the SAC Nicole was extremely depressed (she even stated that she wished she was dead). I was so worried about her and I grasped up every bit of information on ADHD and mood disorders that I could find.

A friend of mine told me about a seminar being held by CADDAC. That seminar changed my life. It was from there that I found CADDAC. I attended the CADDRA conference in 2006 and haven’t stopped learning since. I met my angels Heidi Bernhardt who has taught me so much about ADHD and Georgina Rayner who has taught me so much about advocating for my daughter. Through CADDAC, I learned what assessments were necessary, how they should be written to ensure that the children get the support they need, and that advocating never ends.

In the summer of 2006, Nicole underwent further testing by a neuro-psychologist, an audiologist, and an occupational therapist. After all of this expensive but necessary testing it was determined that Nicole has ADHD, severe anxiety, sensory processing dysfunction, and Central Auditory Processing Disorder. In short, she has executive functioning dysfunction and slow processing speed, combined with LDs and an extremely high IQ. Also in the summer of 2006, I noticed that Nicole had become listless, hopeless, and rather void of emotion so we discontinued her medication. Immediately, I noticed a positive change. I realized then that this medication had actually made matters worse for her. The day that she stopped taking her medication she began to smile and giggle, and I realized that she hadn’t done so in the entire year that she’d been on the medication. It was simply not right for her.

An episode that happened that day was so typical of the ADHD child. We were out shopping, giggling, laughing, and enjoying each other’s company. All of a sudden she pushed the shopping cart too far and she ran over my foot with it. It hurt and with a reaction of pain, I looked at her and said “NICOLE!” She looked up with me with the saddest eyes…I realized my mistake immediately and I said “Nicole, I’m sorry I know that was an accident. I didn’t mean to yell.” She looked up at me and said, “Mommy, it’s just that I’m always trying not to make people mad at me.” Those words said it all. She doesn’t want to get into trouble. She wants to be normal!

Nicole began taking a new medication (for ADHD) and continued with another medication to help control her moods in October of 2006. By the middle of grade two, after several letters and meetings with a new principal and two special ed representatives from the board, it was finally agreed that the SAC class was not the right place for Nicole and that she would be fully integrated into the regular grade 2-3 class. The day after she began the regular class, Nicole came home to tell me what she was learning about in her class! She hadn’t done this in all of her time at school. Nicole was provided with support for math and executive functioning difficulties at varying times throughout the day. Nicole’s sensory issues prevented the use of a head set system and so Georgina attended further meetings with me, after which, a sound field system was found and installed in her classroom. Unfortunately, this was never really used properly; it was too loud and drew attention to Nicole which caused her to resent its use.

It has been and will continue to be a difficult road. However, the grade 2-3 class teacher, though apprehensive at first, became involved and began learning about Nicole. She began to realize how important allowing Nicole time for processing, warning her of transitions, and supporting her needs are. On the last day of school in June, the grade 2-3 class teacher sent home a note thanking me for helping her to learn about Nicole, thanking Nicole for working so hard and brightening her days, and telling us both how proud she is of Nicole for working so hard and achieving so much. This year, Nicole is in grade 3. She is fully integrated into the grade 3-4 class, but has access to the support centre (though she hasn’t needed it yet) and has access to the EA in the afternoons. She is working at or above grade level in all areas. It is finally coming together. She has worked hard to get to where she is. She is beginning to advocate for herself and her self esteem is improving.

Hannah

~~~

2007 11 22 Minister’s Office

Ministry of Education
900 Bay Street, 22nd floor Mowat block
Toronto, Ontario M7A 1L2

Dear Honourable Minister Ms. Wynne

I am writing to you today with concern about the lack of recognition of the medical condition known as Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder (ADD/ADHD) as a “special needs” designation in our Schools. Children with ADHD require many services for help. My experience has been this. Our daughter suffered a great deal because she was misunderstood, and not diagnosed until 9 years old. She “didn’t want to be bad”, as she would say. She really needed help, in school and at home. Since, we didn’t receive proper support straight away, life for her and our family got worse. It certainly was not because we weren’t looking for help, it was because no one we talked to could advise us with what to do. We sought help through many caring professional people. We took courses on parenting, attended workshops on behaviour management, we began play therapy with a social worker, and attended parenting skills seminars lead by professional experts. We read everything and anything we could to learn best how to help our daughter. She became a very angry little girl. She was destructive and was taking out this frustration on her classmates by hitting them. This caused her to be isolated by all her classmates and not have any friends. She didn’t know how to cope, and we were at a loss with what else to do. We tried everything. She fell behind in her grades, she was excluded from playing games, attending birthday parties, and she became the ‘scapegoat’ and was blamed for everything. Worst of all, she had no friends. She was not liked. One neighbour actually told us we should “keep her inside and lock her in”. Can you imagine being told that! Sad isn’t it. No one deserves to go through this, definitely not a child. As a parent, you know or at least you think you are doing everything you can. Honourable Minister Wynne Every child should have the right to learn, with appropriate support services they need in place so they can succeed. Our teachers need to be educated and some retrained on how to teach children with ADD/ADHD.

We realized, the school didn’t want her there and they too didn’t know how to help her. We changed schools, the same thing happened at the next school. Our family doctor referred us to Sick Kids. It wasn’t until we ended up in the psychiatry department at Sick Kids that we finally got some hope. We were put on the wait list at their Child Development Department. We waited two years for that appointment. By this time, our daughter was so out of control. Although they apologized for the inconvenience of having us wait so long, the damage to our daughter socially and emotionally was already done. During this waiting time, psychiatry referred us to a children’s mental health centre (the Child Development Institute), which led a group specifically for aggressive young girls called the Girls Connection, thank goodness. But, we were put on a wait list there too. Thankfully, they had a family support night which we were allowed to attend while we waited for help. The Doctor’s at Sick Kids reached the diagnosis of ADHD, as well as a mild intellectual disability. It was five exhausting, frustrating and challenging years before she was given medication– (a controlled narcotic based drug) to help her with her lack of concentration, social aggression and impulsivity.

My husband and I are not professionals or educators, we are parent, and parenting an ADHD child is much harder than parenting other children. It requires a lot of patience. Having to fight with the school system to obtain what your child needs makes it that much harder. We can never take away the pain that our daughter felt when she was ridiculed, bullied, teased, or rejected by children and the community for all those years. Unfortunately, this traumatic experience will remain and be remembered forever. Why, for something that is not her fault.

I believe, children with ADD/ADHD become adults with ADD/ADHD, they don’t grow out of this condition. Having a child with ADHD is not the end of the world and they won’t die from it. But, they can be taught with appropriate supports to learn to live with it, just like anyone else with a medical disability. If children with ADHD are not designated as special needs in our schools, they won’t receive the proper help they need. These children will then require more Children’s Mental Health services and will be put at further risk of facing severe depression and even suicide. With proper supports in place, they will be able to learn, cope and not only understand themselves better, but develop empathy for others, making them better citizens in our community. I believe that it does take a community to raise a child”. If this designation does not get recognized, then we, as educators, professionals and parents have failed to help these children.

I beg you, Honourable Minister, unless our schools receive a clear mandate from the Ontario Minister of Education recognizing ADHD as a legitimate medical condition that affects a child’s learning and, instructing the boards to identify it as such, our ADHD children will continue to slip through the cracks of our education system and be of further need of Children’s Mental Health Services.

We thank you so very much for taking the time to read and consider our letter. We appreciate everything you are doing to help children. We will anxiously await your response.

Most Respectfully,

Lena and Anthony

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Nov. 28, 2007 I have a 12 year old boy who has been diagnosed with ADHD, of the predominately inattentive subtype and a learning disability in executive functioning: working memory and processing speed deficits. He is in grade 7 and attends school in the Dufferin Peel Catholic District School Board in Mississauga (Mississauga South). He was assessed in summer of 2007. The psychological assessment was done at our request and cost and was followed and confirmed by a child and adolescent psychiatrist. As soon as I had the formal letter, I phoned the school, booked an appointment with the principal and met with her on Aug. 31, 2007. I provided her with the both assessments, informed about the need for accommodations and IEP (which is clearly stated in the report) and asked how long the whole process is going to take. Since I didn’t get an answer (just a reply that she was going to meet with teachers the following week) I asked to be informed as soon as possible about the next steps, the length of the whole process etc. I didn’t hear from school until Oct. 2, that’s when the psychologist from the board called to inform me that she was going to meet with the school principal, special ed. teacher and the classroom teacher. She also said that after the meeting somebody from the school would give me a call. I told her that I already requested to be informed and kept updated on what was happening with my son IEP and my request was ignored. The psychologist apologized and said that she would make sure I would be contacted the same or the very next day. I waited another 2 weeks. Nobody called. I felt ignored and basically not taken seriously. I contacted the psychologist to find out if the meeting took place or not. She apologized again that I didn’t hear from anybody and at that time she informed me that the school and her wants to have a meeting with me. She also provided me with a date of the meeting Nov. 1. We met as scheduled. There was the principal, the psychologist, special ed. teacher and my son’s classroom teacher. The school’s attitude was basically that that my son does not meet criteria of a special need child because of his good academic performance. I was asked the same questions, answers to which were already provided in the doctor’s report. The principal asked me how long it takes him to complete his homework and I answered 3 to 6 hours depending on a day. I heard back that it shouldn’t take more than an hour. That was the end of their understanding. The principal’s attitude was suggestive I was exaggerating my son’s problems. She sighed, interrupted and commented on the choices I made for my son’s extra curricular activities, the way I handle his “snowlines”etc. I feel it was improper for her to comment that when he goes to high school there would be no babysitting. Did I ask for babysitting? No! And why did I have to “prove” my point. I came to the meeting thinking we would be working as a team, not adversaries. I was looking for help for my son who has learning disabilities, not an attitude problem or is lazy to do his work. They suggested they would start working on an informal IEP and strongly tried to dissuade me from proceeding with the IPRC meeting. Their point was that they had a case like that last year and the girl was not given the right to a formal IEP by IPRC because, just like my son, she had performed well academically. In the end I presented the principal with the written request for IPRC meeting. As for the question was how long it is going to take before I hear about the meeting, I was told: very long, probably months. As I mentioned earlier meeting took place Nov.1. Today is Nov. 28. The timeline of 15 days to answer my request is long gone and I didn’t hear from anybody. The board is obviously not taking it seriously. When I called and mentioned 15 days timeline to respond to my IPRC request I was told I must have wrong information, there was no such thing and the process usually takes months. Why should I trust the system and expect that my child is going to get proper accommodations. One term is already gone and they still don’t have IEP for him. I am afraid that I will loose at the IPRC meeting. If the school is trying to dissuade me from pursuing with IPRC meeting that must be the Board’s attitude as well. I certainly feel for people who have to go through this, unless other boards respect special need students’ rights. I encounter enough difficulties every single day. I certainly don’t need extra challenges. I wish my child was “normal”. I wish he wasn’t lost in his thoughts. I wish he had time to play like others. I wish I didn’t need to supervise him for hours every single day or walk with charts and points around the house trying to motivate him. I have no life after 3 pm, but that’s because I am a caring parent and I’m there to help him. I hope some day he’s going to learn how to deal with his disabilities on his own but now he needs my help. I never complained to anybody. I just take day by day. I have done it for years but now I need help. I have family and a second child who also needs her mother. The lack of action on school’s side as well as the lack of communication only adds to my frustration.

Sincerely, Helen