This and that

I gave a presentation about ADHD last night at our local Learning Disability’s support group last night. It went pretty well, but I think I whipped through my PowerPoint presentation pretty quickly. I was thinking, “Okay, 20 minutes of talking – and now WHAT?” but the group ended up having questions and discussions for another hour and a half! I often forget that many people are in that “learning stage” of the entire special education world.

I felt terrible for one lady – her daughter is 12 or 13 and they have just received a physco-educational assessment, and now she is fearful that she is “too late” for helping. I assured her – as did many people within the meeting – that she still has lots of time and that although it seems overwhelming right now, she will learn what is needed.

After the meeting broke up, the Executive Director of the LD Association told me that I am an inspiration to many, and I should be proud of everything we have worked through in our lives. An inspiration? Never did I think I would hear myself called that! A mess… now that would make more sense to me, to tell the truth!

One of the people I sat on the ADHD Board with was also in attendance, and she and I went for coffee after the meeting. She told me how she likes that I insert a bit of humour whenever I do a presentation, and I confessed that I don’t really intend to do that – it just seems to happen. “Either way,” she told me, “you make people feel comfortable with a difficult subject and help them to realize that things aren’t always that bad.” (Made me feel good, I will admit.)

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The A-man’s drama class will be putting on an adaptation of The Lion King toward the end of the semester. The A-man’s audition was last week, and he has been given the role of Mufasa for the play. His off-stage role will be that of lighting. He feels that lighting is the most important off-stage part because, really, “The play can’t go on if no one can see the actors!” What a guy.

Still haven’t heard back from his English teacher – guess I will have to give her ANOTHER call today. I realize she was away for a couple of days last week, but it really is quite ridiculous that in almost 2 weeks she hasn’t had a chance to return my phone call.

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My new assistant begins today. Not quite sure what I’m going to get her to work on first – guess I will just have to wing it. Wish me luck!

Letter to the teacher

Here is the letter S will be giving to his teachers when he starts school next week:

Dear Teacher,

I would like to provide you with some information one of your Grade 9 students this year – S.

I know you will be receiving a copy of his IEP within the next few weeks, but I thought it would be best to start the year with all of details about his special educational requirements fully explained, and to also let you know that I would appreciate being kept aware of his progress in your classroom via email. Above, you will notice I’ve provided my various contact numbers and home email address for your records.

S has been diagnosed with a number of learning disabilities, in addition to having ADHD, Aspergers and a Generalized Anxiety Disorder. He has had a board-provided laptop for two years, and has been well-trained on all of the programs installed on his system. S and I also participated in a Board-sanctioned training program over the summer and we are both prepared to ensure a positive and successful transition to his next level of education.

While attending the training program in August, the Superintendent of Special Education assured the parents that most of the text books utilized in our schools have already been scanned and are available through the Board office. I would appreciate it if you could let me know the details of any textbooks that will be used in your classroom so that I can ensure he has what is required already on his system. If you can email with this information sometime this week, I will confirm the data is on his system over the weekend.

In addition to having his textbook available electronically, I wanted to advise you that S does have a graphomotor disability, and should not be requested to copy detailed notes from the board. His IEP will indicate that this information be provided to him already prepared, so that he can make notations as the work is being discussed in class. (If possible, it would ideal if the information could be provided in advance to allow him the opportunity to scan it into the laptop prior to class and make electronic notations, but I do realize this won’t always be realistic.)

S will utilize Kurzweil (a text-to-voice software program) to assist him with the reading of the text, and Dragon Naturally Speaking (DNS) will be used for the inputting of his information. DNS is a text-to-voice program that allows him to share his thoughts and ideas freely – he will use this program to speak into the computer, get his thought into print, and will then require some time to edit the information into suitable context.

For the past three years, S has had EA support, and I have been advised this will continue during his time at your school. I’m not fully understanding of how EA support works within the high school environment and ask for your patience while both S and I adjust to this.

Now, a little bit about his Aspergers. In January 2008, S underwent some extensive medical testing, including an fMRI at a hospital. The fMRI is a functional MRI that actually monitored and assessed his brainwave function. In a nutshell – and using a few technical terms as possible! - the results of this test indicated that S needs information to be provided repetitively for it to become rote - his brain simply does not encode novel tasks. He processes everything in a literal manner, and is not able to conceptualize how his present actions can/will affect his future. He lacks imagination and will not be able to visual/conceptualize new ideas. He can neither read nor understand facial expressions/voice tones, and often will not look you in the eye when speaking. He will not do this to be rude – he simply is unable to do this, so please don’t force this issue as he can become agitated.

With respect to the ADHD and Generalized Anxiety Disorder (GAD), S has been fortunate to have been experiencing fewer and fewer symptoms of the GAD, and hopefully won’t have any problems at highschool. He has been known to become very anxious during transitional periods or during times that are out of the norm (such as leaving ‘normal class’ to go to the gym for an assembly.) Past experience has shown that when advised of schedule adjustments in advance, he tends to cope better. S experiences typical ADHD behaviour – sometimes he will need gentle reminders to remain on task (without drawing attention to him) and he does not have innate organizational abilities. Due to his short working memory, he will require reminders about recording homework assignments and assistance in determining the best plan of attack for large projects/assignments. Again, this is where it would be helpful to send me an email with homework details so that I can ensure he stays on task.

Despite the conditions I have explained to you, S is a very happy teen that truly wants to do well, and is very willing to please others. Nothing makes him happier than to be of assistance in some way, shape or form. He is very musically inclined, loves to do magic tricks, and is happy to tell you the latest joke he has heard. He has an average-to-above-average IQ, and has the ability to do well in school if provided the necessary accommodations. S has been the target of bullies in the past, and as such, tends to want to ensure all rules are clearly explained and treatment for all is ‘fair.’

I have always been very involved in my son’s education, and would like to see this continue at high school. I realize that my child is not perfect, and I also recognize that S’s perception is often very different than the perception of others. I am willing to take the time to ‘peel the layers’ to get to the heart of any/all issues with him, and it is my sincere hope that together we will have an opportunity to ensure his success. Once the school year has begun, I would appreciate the opportunity to meet with you and further discuss the information I’ve included in this letter. I apologize for the length of this letter, however I feel it is very important to start the new year/new school with as much information shared as possible.

I will contact the school within the next two weeks to set up a meeting if I don’t hear from you prior.

Thank you for your time – I look forward to meeting you soon.

A good meeting

At lunch time, I went to meet the new Principal. She was younger than I was expecting. I have no idea why I was expecting an older lady, but for whatever reason, I was.

I was very pleased to see that she had S's student record on her desk, and as we sat and chatted, she went through various sections of the record. Every now and then she would ask questions specific to the section she was looking at - such as suspensions.
It was pretty obvious from the start of the meeting that she has some educational background in special education. She knew things about Aspergers that the average teacher wouldn't now - unless they have either taught such a child, or had some formal training. I wasn't sure which is was until she made a few comments about his LD's, and his ADHD. Then I knew.

YES! (It really does help with the Principal has a good grasp of the issues.)

I was able to address my concerns about the EA and how Hubby and I had our reservations about her formal training. I used the fractured thumb incident as a "for example." The very first thing she said after I told her about that was, "Well, that is the worst thing you could say to a child like S - it would have made him even more anxious."
My heart did yet another happy dance.

I was told that funding has been cut (typical) and she would see what she could do to move the EA's around. For now, though, S will have the same EA as last year.
I also asked about the French teacher - were we going to have the same one? Answer - No. (yippeeee!!)
The Principal then told me that the SERT has requested to offer a Social Skills class, and would I be willing to have S participate in that? (Hmmm.... child with Aspergers and a Social Skills class - would that be helpful??) Of course I said that I would be pleased to have him take such a class, and then I was informed that the class would be offered at the same time of day as French would be. HA!
The SERT couldn't get S exempt from taking French, but she has come up with a viable way to have him excused from the class! :o)

I left the school feeling very positive.

Tonight, I had a minor anxiety attack when I couldn't locate S's records binder.
This binder is over two inches thick, and has to be upgraded to the next binder size. It is full of information pertaining to S - complete with his pshyco-educational report, all doctors reports, reports from his OT, his Play Therapist, all report cards, suspensions, letters to the school...in other words, it is not something you want to lose. I checked two spots then found it in the third.
When I had started to reorganize the boy's homework cabinet - putting away all the new school supplies - I found a number of pieces that needed to be filed in each boy's binder. I knew exactly where the A-man's was, but for some reason S's wasn't where it should have been.
Crisis has been diverted - now I just need to get a big binder and more sheet protectors.

(yes, I am a geek, I know...)

Educating the educator?

Last Thursday, I noticed a note in S's agenda from the EA. The note was written on Tuesday afternoon, and started with "S did not have a good day." It then when on to tell me that unprovoked, S approached another student and told an off-colour 'joke.'
First off, I didn't quite know why a child would need to be "provoked" in to telling a joke, but she obviously felt this way. The note then went on to tell me that when she asked S to go to the Principal's office for saying said joke, he refused. I am thinking that is what really ticked her off - she does not like to be told 'no.'

Anyway... I asked S to tell me what the joke was. He would not tell me. After a little while of my promising that I would not get angry, nor yell at him, he told me the joke. I must say, it was very rude, and really not appropriate. I determined where he had heard the joke - the A-man was in my bad books, I will admit - and then I had to try and figure out if he really even understood the punch line.
S claims that he did not really understand the joke, but when he told it to his first friend, the friend laughed, so he thought he should tell it to others. Hey, it got a laugh, so it must be funny, right? We can't admit that we don't 'get' the joke that others find amusing.
I guess it was while telling the joke to another friend that the EA overheard and told him to go to the office.

I think what bothered me the most was that when S told his EA that he didn't understand the joke, nor why she was angry with him, she told him that she thought that answer was "a bunch of bologna." Umm, PARDON ME? I would think prior to going off the deep end, this type of thing should be determined first, wouldn't you?
I wrote a note back in S's agenda indicating that I didn't think S understood the joke, given his lack of knowledge of such subjects, and I didn't appreciate the 'bunch of bologna' comment. S told me on Friday that the EA did read my note, but she did not to respond to me.

I sent an email to the doctor asking if it really was possible that S did understand the joke and was trying to pull the wool over my eyes. His answer is very hard to interpret, but from what I can get from it is that it is very possible that S was simply repeating the joke to all of his friends because they laughed. He would not have been able to read their faces/reactions to determine that it was off-colour or offensive.
It is a very sexually-innuendo type of joke, and in my gut, I really don't think he understands it. The A-man does for sure, but unless the A-man actually took the time to explain it to S, I really don't think he got it. Well, until the EA took it upon herself to actually explain it to him.
Again, is sex ed within the scope of an EA?

Only a few more weeks left of school. This has been a much better year for S, no doubt about it. I just hope that next year he is given an EA that has knowledge and experience with the multitude of issues that come with my wee little man.

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On to another subject for a second. For regular readers of my blog, you will remember that I have been helping a lady that is trying to obtain special educational needs for her daughter. The school board finally agreed to provide a psycho-ed assessment for her daughter, but it did take a LOT to get to this point. Last week I got a phone call from the Mom telling me that she was going to get the full results on Monday (today), but she got a phone call from the board psychologist - the person that actually read the results - and it turns out that her daughter is developmentally delayed. Apparently her daughter has an IQ around either 60 or 70, I can't remember which. Either way, she is severely delayed, and I find it terrible that a child can get to the age of 13 and be almost finished Grade 7 before this type of thing is learned. An entire elementary school career, full of 'professional educators' have failed this child, in my opinion.

I realize this woman is a rude and overbearing parent. I realize she is harbouring a lot of resentment towards many of the teachers within that school - probably as much as the teachers resent this mother! But that does not excuse the fact that this girl can have such a severe delay and NO ONE caught it! Her report cards have always been B's and C's - with some A's in there. How can a child with an IQ of 60 or 70 be working "at grade level" (as a B mark is supposed to indicate) since she was 4 years old? I think accountability should be demanded in this case, but I am not going to be the person to let her know that.
I guess her daughter is going to get the IPRC she has been wanting... but how sad that this is the result of the fight.

Reflecting

When I arrived home yesterday afternoon, the boys were outside - in the very deep snow - playing baseball. After that they got in to a rousing game of football, which was interesting considering the amount of snow they were trying to run through. I know Spring must be close when I see my children actually going outside - on their own accord - to play. The temps were just above freezing, but yesterday had been so sunny, it almost seemed tropical. (Notice that I said "almost")

Not sure what is going to happen today at work - Boss gave assistant a bit of an ultimatium. I may be looking for another assistant before too long. (sigh)

I went to an information session for the ADHD association last night. What a great session! We had a number of new faces at the meeting, and you could just tell that they were brand new to the whole "Special Education" world. Boy, do I ever remember being in their shoes!
You have SO many questions, and you hear all these acronyms and terms, and you have NO idea what any of it means... it can be daunting for even the most willful of people.
The part that I find most effective in these sessions is the second hour - the hour that is 'open forum' where people get to just discuss what is important to them.
Some people rant - gosh it's nice to be with others that really, truly understand.
Others want advice - my son is lying all of time...how can I get him to stop?" (So typical of the ADHD child...)
And others are just there to help share their years' of experience with the ADHD child. They have 'children' that are in their late teens - these are the true battle veterans that have "been there, done that."
Although the organization may not be very large, it DOES help people understand this often confusing disorder known as ADHD. I just wish we could reach more people! We have a very good board, and we are doing our darndest to get our information out there, but I have found the stigma associated with ADHD is not always the best. Gotta love the media.

Mind you, with jerks like "The Tourette Guy" on the internet, that disorder doesn't get very positive attention, either. Come to think of it, most of the disorders that affect either one, or both of my children, have some pretty negative stereo-types attached to them... Gee, no wonder I felt like a failure as a parent for so many years. At least now I know that I dealt with the cards I was dealt in the best way I could, and now, my kids are pretty darn awesome! :o)

It turns out The A-man lucked out - one of the tests he was supposed to do yesterday has been delayed until Friday. He had a 'take home' Math test yesterday for homework. At least that is one subject that I am not required to help him with very much - not that I would have a hard time with that. Oh no, he needs help in subjects like Science - where I am just so NOT effective...

S brought home some Geography homework last night. I guess he knew that I was justifed in being upset with him yesterday morning, because that was the first thing he said to me when I got home last night. "Hi Mom... I only have Geography homework tonight. How was your day?" Too funny.

I have an information session tonight with the ADHD group. It's a session on "How to read your child's physco-educational assessment," and although I think I have a pretty good grip on this, I will still go to the meeting for a number of reasons. One - it's always good to learn more. Two - I"m on the board of directors, so I need to support the monthly meetings, and Three - I have suggested to a couple of parents that they should consider coming, and I am curious to see if they do.

The one Mom is the lady that I was helping at the beginning of the school year. The Board has actually started a full physco-educational testing on her daughter, and I think it would be very good for her to hear some of the terminology prior to getting that report. Heavens knows, Hubby and I were very confused when we received S's.

Off to the grind...

Frustrated today

I am getting more and more frustrated with the lack of professionalism from S's EA. I look in his agenda, and in yesterday's Science block, she has written "Test". Gee - any idea what he is supposed to be studying? Then, I look in his science notes - there is nothing there. Did he bring the Science text book home to study from? No - he forgot it.
Geography...he knows he has a test, but he isn't sure if it's today or tomorrow - and again, he doesn't know WHAT the test is on!
"SHORT WORKING MEMORY" people - he won't remember if it's not written down! Clinically proven. Doctor diagnosed! I left a "not so nice" note in his agenda, and I will be having my follow up meeting with the Principal very soon. This is getting beyond ridiculous.
Had S's re-entry meeting yesterday morning. It appears S had a very rough week all the way around last week. I was never advised of this - at all. Again....why not?

S was working on training his laptop's voice recognition last night. He was required to read the same sentence over and over again until the computer 'got' his speech patterns. He was very frustrated after saying the same thing for about 5 full minutes. I could see why. I think we will work on it a bit more tonight - when he is not tired from studying geography.

The A-man had his final exams in Learning Strategies yesterday. His final mark for the course - 95%. He is SO proud of himself, and I must say, when I read the final essay he wrote, I was pretty darn proud of him too! Just proves that he can do it - when he applies himself. I think he sees that now. It also helps that he is not being pre-judged by the teachers in the school, I think.

The show went well. I was beat, beat, beat on Monday afternoon, and JUST starting to feel somewhat normal now. Next show - Hamilton in just over a week. The day I leave for Hamilton is the day S has his fMRI.

...and, back to the grind...

umm... English please??

Here is a copy of an email I received from S's specialist today. It is a forward from the new doctor S will be seeing for the fMRI...

Dr R
I'm planning to set up S's fMRI. As I see it on your requisition, he is a 12 year old with Aspergers syndrome, with anxiety. I'm thinking of doing covert Verb generation, Sentence Completion and Naming paradigms. Do you think he will be able to lay in the magnet for an hour without moving? Do you think he could follow instructions to do these tests? If yes, maybe doing a Diffusion Tensor Imaging to visualize white matter fibers and comparing the Arcuate fasciculus to normals would be of interest as well. If you think he could not handle it please let me know.
Thanks
Dr's name & hospital

Okay, this email has me puzzled for a couple of reasons. Uh...aspergers syndrome? We have never been told he has this disorder. And what the HECK are all these other tests all about??!! I can tell I will be spending a bit of time on the google search engine tonight...

I forwarded this to S's special ed teacher, and she replied very quickly. Her email indicated that if S has Aspergers, we will have to have his IPRC placement adjusted, and she is very upset that the original psycho-ed assessment didn't catch this along with his learning disorders. (This is one disorder she understands well as her eldest child has been undergoing testing for it.)

In the past, S's doctor has indicated that he feels S has a "nonverbal learning disorder." When I sent him a WTF? email about the Asperger's dx, our current specialist's reply email to me indicated that this NVLD would fall within the Aspergers Syndrome spectrum of disorders, and he assured me that S doesn't have Aspergers and the other doctor must have assumed this because of the testing that has been requested. I am not 100% convinced. That is a pretty big assumption for a doctor to make when setting up a very specific, very specialized type of test. Part of me is wondering if Dr R. is wanting to rule out Aspergers with this testing. I am so confused...

Aspergers would definitely explain the lack of social skill's development. I guess we will just have to play the waiting game - again. In the meantime, I have all kinds of new information to research...

Educating the educators

...(sigh)....and so it begins again...

I can tell that I am going to have to spend a bunch of time educating the teachers about non-verbal disabilities AND the disorder known as ADHD. I am getting very tired of having to do this year after year, after year. And yet, here we go again.

S had a note in his agenda today explaining how he got very upset during phys-ed. Apparently he was needing to work in a group in developing a game "cooperatively." When are these teachers going to realize that ADHD students are not able to do things "cooperatively"? Being rigid and regimented is part and parcel with this freaking disorder, yet, every single year, I have to mention this about 15 times before it starts to sink in. (Either it sinks in, or they just stop bringing it my attention. I'm not sure.)

Then, just to make things fun, let's throw a group of kids together, and then tell them that they all must agree in order for it to be 'fair'. Yeah, that is going over like a lead balloon. Social skills - or rather lack thereof - is a defining feature of an NLD, and yet the teachers feel S is being unreasonable. Hmm...let's see...would this same teacher expect a child in a wheel-chair to get out of the chair and walk across the room because "it's part of the learning curve"? What? What do you mean, "That is ridiculous!"?? But, if you expect a child with ADHD and a non-verbal learning disability to do that, why on earth wouldn't a wheel-chair bound student be expected to do something outside the realm of reality??

See, if we could only make these disorders show in some physical way, neither of my son's would have a problem. But, because they are both well-spoken, and visually 'fine', it seems I have to explain the same things, time and time again. I'm tired of this.

I have reviewed my copious notes and books, and I will (again) make photocopies for the teacher (and now) the EA. I will have to highlight the parts that pertain to S's particular learning abilities, and try to let them realize that although he does not have a physical disability, he does still have a disability, and accommodations must be made for him. Now, I'm not saying that he can be a total brat and get away with it, but when it comes to social expectations, the teacher is going to need to incorporate a 3/4ths rule.

The 3/4th rule is simple, and actually will apply to most kids that suffer from ADHD. Typically, these kids are socially under-developed to about 75% of their true age. S is now 12, so that would mean, socially, he is 8. He will react in the way typical of an 8 year old - most of the time. There may be times that he is able to do a bit of self-talk, and role-playing, to realize how he is 'supposed' to act, and if not thrown into a heated moment, he may be able to adapt to that more conducive to a child that is 12, but only when all these other things are in place. Trust me, that does not happen all that often. So, would you take a group of 8 year olds - that's what, Grade 3? - and expect them to all cooperate and all agree on something. That just would not happen.

As it turns out, I will be attending a "team meeting" on Friday morning to review S's 'case'. This meeting was established earlier today, and is simply a formality and follow up to the whole IEP process. But, I know I will spend the meeting trying to educate the educators about these disorders. And, I'm sure, they will leave that meeting thinking I am simply making more excuses for my child's behaviour. I am not. This is a physical disorder, it has been studied and reviewed up the yahoo, yet people that don't live with the reality of ADHD really do not have a clue about what it can do to a child.

I think this is what bothers me the most about ADHD. It is a term that many people have heard before, and think they understand what it means, but knowing the difference between the acronym and the reality of the disorder are two very different things. It's like my trying to describe to you what it feels like to have lupus. I can't describe how it feels. I live with it, I feel it, and some days I feel it more than others, but describe the pain? Sure. Can you describe child-birth? Go on...try that...

I'm not really sure who will be there on Friday morning - guess I should request a list of the participants, plus a copy of the agenda, just so that I'm not thrown off. I will have to make a mental note to do that tomorrow.

I had my meeting with the A-man's resource teacher this morning. I presented my information, and although she was very receptive to the information, and willing to modify the IEP to reflect this new information, I am not holding out much hope on getting a psycho-ed test done through the school. Apparently they can only get 2 done a year. Yeah, isn't it great that the Ontario Government has just allocated those millions of dollars towards special education? Where, exactly, is that money going?? More doctors to do this testing? Sure...and where are they? I have placed a call to my MPP to ask more about this, but I know I will get no where - he is a member of the 'opposition'. What a crock. Every single school in our board only gets two tests a year? Good thing there aren't many kids with specials needs within Ontario...

Anyway, as the teacher and I were talking, the head of special ed came in, and he is willing to do these "Kauffman" tests to determine where, exactly, the A-man is with respect to his education, but I am thinking hubby and I will be forking over more cash-ola to get a formal review done. I really want this established before he goes on to secondary education because once a child reaches University or College, the resources are amazing. Of course they are - you are paying for that education. A lot different from public-funded education. Feeling a bit cynical today, can you tell?

I guess that is just the way it may have to be. Hubby and I will talk about it further - just not today. I'm too beat, and he's already been in bed since 8:30, the poor guy. Gotta go - have to make photocopies....

(sigh)

Recovering...

Whew - what a weekend! I am dead-dog tired, and it took 3 snooze button pushes to coax myself out of bed this morning, but I think it was worth it! Had a great time in Montreal, and even though I was officially there to 'work', I must say, it was the best work weekend I've ever had.

A big ole "THANK YOU" to Cuz...for allowing me to stay at the B&B on Thursday evening, and again for the coffee pit stop yesterday afternoon. I needed that break - 6 hours of driving at once is too much! Was good to take that break before I did the final stretch of the drive.

The A-man did a great job with his revised Science Lab. He worked on it all by himself, and only asked Hubby for a bit of a reminder of how to insert a table in to the word document. I resisted for as long as I could, but ended up sneaking a peek at it this morning. I think this will be more in line with what the teacher was looking for. I'm proud of him for making sure he completed it without much prompting. I'm also very glad the teacher allowed the revision. I saw what he had handed in originally. It was very poorly done.

S didn't have any homework over the weekend. The Terry Fox run was on Thursday, and it sounds like the rest of the day was just a fun day for the whole school. Of course, I'm sure it would have nothing to do with the next day being a PA day...

Dropped S off at school after his doctor's appointment, and since the school was out doing the run, I was able to have a good chat with her. I think I may have to educate her a bit about the conditions that affect S, but for the most part, I think her philosophies are in line with hubby and I. This is good.

I have a meeting with the A-man's resource teacher tomorrow. Going to beg and pled for further testing. Well, no, not really - just going to fully present my case, and present the newest information. I know they don't like to do 'testing' at the highschool level, but if it needs to be done...

Maybe, just maybe we are getting there.

Oh, and a special "HAPPY BIRTHDAY" to Loonie! I hope your 40th b-day is great, and I hope your first day back to work went well for you. You have a great baby - I'm sure he will do well while you go back to work. Thinking of you!

Advocacy, and learning what it means

I went to an ADHD meeting last night. This was the monthly information session that is held for parents and educators. Last night's meeting was on advocacy - what the acronyms mean, how to wade through the details that effect your child's special educational needs, that sort of thing.

It doesn't seem like that long ago when we received S's psycho-educational assessment and learned of his various learning "disabilities", but it would appear that in the grand scheme of things, two years really is a lot of time. But, then again, maybe it isn't that two years is a lot of time... maybe it is that I am the type of person that must educate herself on something as much as she can. I'm not sure.

I'm feeling very reflective this morning. I feel so badly for all of those parents that were at that meeting last night. Obviously, every single one of them wants to do the very best for their child - they wouldn't be at that meeting, otherwise. But the way that the special education system is set up here in Ontario, it's almost like it has become a "us" (the parents) verses "them" (the school system), and that is not how it is supposed to be. We are all supposed to be here for a common goal - to educate our children.

Maybe it's that the child with special educational needs simply causes more work, and more expenses, and therefore is not an 'ideal' for some educators. (Note that I said some. Others do not feel or behave as if they believe this.) I realize that the classrooms are very full and busy places, and teachers don't have the time to give each child special attention, and therefore when there is one child that demands that attention, I can see how it would be very easy to become frustrated with that child. Then we need to add in the fact that there is never just one child in each class that has a special educational need. Well, it would be a very rare classroom if there was only one child with a special educational need.

But looking beyond that, beyond the day to day interactions with the child that the teacher must face, we have the 'management' team of the school - the principal and vice principals. These are the front-line people that the parents turn to for information and education about the Special Educational system. Sure, there are some wonderful principals out there that work WITH parents - educate them, listen to them, and offer true and helpful advice. I wish we had more of those. But, when I sat around that table last night, and heard from so many different parents, it would appear this type of principal just is not the norm. This is what I do not understand.

Why does it appear that so many principals resist educating the parents about the child's rights to an education? Sure, there is this wonderful booklet they give out about the IEP process, etc., etc.... but here is something that was raised last night. What if the parent of this special educational child is also a person with a learning disability? What if the the idea of trying to sit down and read that very boring piece of literature is something beyond them? Would you admit that to your child's educator? "I am not able to read/comprehend this information."? I (know it would be a very painful thing to admit if I were in that situation.) So rather than admit this, they simply rely on the principal to be honest and true about what resources are there, or are available, for this child's educational needs. The very sad thing is that it would appear far to many principals - and even the Special Ed teachers themselves - either are not educated about what is available, or simply do not feel the need to help teach the parent.

And so, we hold meeting like last nights. We try to let parents know about their rights, and their children's rights, to special education. There were three of us from the ADHD board last night, and another lady from the Learning Disabilities Association, and after the two hour meeting broke, all four of us had parents coming to us for some individual assistance. I remember being in that place - simply not knowing what IPRC stood for, never mind what the process was. Not sure if I even had the right to be at that meeting, never mind demand certain things at that meeting. I am very tenacious, however, (in case you didn't realize that) and I have spent many, many hours reading and educating myself about this. I have bought books, searched Internet sites, attended meetings, and I have gone to weekend conferences. But, I am not the norm - never have been accused of that! ;o)

It is just so frustrating! I wish I could sit down and talk to every single educator out there, and explain to them what a parent goes through during this process. If they have a child with a special educational need, perhaps they understand a BIT more, but that is usually the only time. Then there are so many educators that don't have a child themselves - it is really hard to educate them about it when they really don't know what a parent feels for their child. That feeling is something you simply have to experience to totally 'get', I think.

Okay...enough rambling for now. I have to take the A-man in to school this morning since we both overslept, and then S has his doctor's appointment this morning. Going to be a busy day!

I HATE having to 'do' homework...

Neither of my children expect me to DO their homework for them - I do not give them the answers, I do not tell them what they need to do, or say, or anything - but I have to sit with them for the entire duration. I don't know why this is the case, but I've found that if you just leave them to it, other distractions always get in the way. Not sure if it's a boy thing, and ADHD thing, or just avoidance tactics. For the last couple of years, I have found that simply being 'around' the kitchen while the A-man is working on his is enough, but that is not the case for S. He will do anything BUT pay attention to what he is supposed to be doing.

Let's talk last night's scenario. Get home from work, the A-man tells me that he had some drama homework, but he was done it. Showed me the typed-out information he was going to have to present in class today, then told me that he just needed to put it on the cue cards provided by the teacher. I asked about his other subjects - seemed a little surreal to think he would have homework in drama, but not science or geography. Oh, yeah, he had some science homework, but it wasn't due until Wednesday, so he thought he'd work on it tomorrow. (Tomorrow never comes in my house.) I reminded him that he had Air Cadets the next night, so it would probably be a good idea to get the majority of the science work done tonight. He agreed - but was sullen about it.

I worked on getting dinner started, and just took some down time for myself. During dinner, both boys brought me up to speed on what they did in school. After dinner, I asked S what section of his project the EA wanted him to work on for the evening. He told me that he had done some of it in class, and he needed to work on "this". I asked him to show me what he had done in class. He was correct - he had done some of it in class - but, in no sense of the imagination did he actually do what he is truly capable of. I am really going to have to push this to the EA - he will do the minimal amount of work if you allow it. He must be pushed. I know it isn't fun, and he can be a real pill, but if we don't walk him through the various steps, and help along, he will not suddenly decide on his own to do more. Just won't happen.

Anyway, he modified the work he had done in class. I had him add a bit more detail to each of the stories, and then made him check it over for grammar, etc. It's a flipping computer, people. Let's use it to it's full abilities!! It takes the words he speaks, and puts them down on the screen. - it is very easy to modify and correct information, but it does take a lot of time and patience to get him used to using all of the features. (Really takes me a long time since I don't even know all the features, but I'm learning.) Anyway - he brought the second section of his project up to a level that I felt was within his capabilities, and then we started to work on the next section - a collage about himself. This he enjoyed. I took him down to my computer, and showed him how he could actually make the whole collage on the computer. Take this shape, add a picture in to it, place these words here, move this up here...he really got in to it very quickly, and had a lot of fun thinking of what else he could put on the collage. Then, suddenly, he heard some music on the TV his brother was watching, and all interest was lost. I had him save the collage, transfer it to his memory stick and then put it on his school laptop. Homework time for S was now officially done.

I was straightening up the living room when I suddenly realized the A-man's drama homework was still sitting on the coffee table - unfinished. Nice. It was now just after 9pm. I called him up and reminded him that he still needed to complete his homework before bed. He was not happy with me. Suddenly, the pencil case is being slammed down, zipped open in a very aggressive way...if you have a kid that shows anger this way, I'm sure you know what I mean.

He then told me that he didn't need to worry about him science homework, because he figured he would just do it on the bus. I lost it. "On the bus??!" Homework is not to be done 'on the bus' EVER. The bus can be used for final study time, or to do some reading, but NOT for actually doing the homework! He used to pull this crap all the time in Grade 7 and 8, and I told him that this just was not going to fly for high school. This really got him worked up, but he did get his work out. He read the first question, slammed his pencil down, and said, "I have no idea what this means. How am I supposed to do this when I don't even know what it means?!"

I was just fuming, but realized that I was not going to be any help or support to him if I kept nagging and going on and on about the same thing (yes, I will admit it - I have been known to do that...) so I calmed myself down while pouring my tea, and sat at the table with him. I read the question, then read the notes that he had taken for the day. I asked him if he had written these notes off the board - he said it was an overhead projector, but yes, he had. Big Mistake.

I asked him to read over his notes, think about what it was saying, then read it again. He was still quite agitated, but after the second read-through, he seemed to be calming. (So was I.) He read the question again, and still didn't know what he was supposed to do. I read the question aloud to him, then showed him where his notes helped to answer this question. He read the notes again, then said "Oh, so this means...." Okay, he's starting to get it, I thought. He was still a little irritated, but he was starting to get to work.

He limped through doing all of the work, and I told him out-right that I didn't know for sure if this is what the teacher was wanting, but I suggested that he go in to class a bit early to show her what he had done, and to ask for clarification on a couple of points. This was the perfect learning tool for him - I explained that by working on it now, he still had another full day in school to go over any difficulties he was having - talk with the teacher - before he had to hand in the final version. I could tell that he saw my point, even though he didn't want to admit it.

The next part was a little bit harder. I reminded the A-man that his "tourette doctor" and Physio-therapist at the clinic had formulated information that indicated he was not to be required to take notes, but rather be given prepared notes to enable him to fully listen to the teacher, and make notations as needed. I asked him if the teacher explained things while he was writing the notes, and he said "No, she just put them on the projector and we copied them down. Then she told us to read these pages, and answer these questions." (For the record, I had a very hard time believing that a Grade 9 teacher would do this.)

As gently as I could, I told him that he should talk to the teacher about making arrangements to have the notes given to him - and he started to get upset and say that he didn't want to be treated any differently. He is worried that kids will bug him, I think. I asked him to think about that morning in class. "Do you think it's possible that you worked so hard on writing nice and neat notes, and getting all of the words down, that you just didn't realize the teacher was talking?" Suddenly his face fell, his shoulders drooped, and he said "Yeah, I think she was talking - but I didn't listen...I just wrote what was on the screen."

I explained that if he had been given the notes, he would have been able to read them as she was talking, and make any notes about things he thought were important. He would have been able to actually learn the lesson - not focus on trying to write neatly. (His handwriting is terrible, usually.) The A-man told me that he was going to go to science as soon as he could, to make sure he was on the right track with the homework, and to also tell her about the note-taking issues.

Part of me wants to just let him do this, but most of me is thinking I need to set up an appointment with the special ed teacher, and his classroom teachers. I have copies of the information from the doctors, and I'm thinking this needs to be shared. Now. I want to allow him the opportunity to self-advocate, but I'm afraid he will just clam up and not say anything to her.

Anyway, he finished all of his homework, and went to bed. All told, he worked for just under an hour on everything. By the time he was done, he did see my point about taking advantage of having a day to clarify information, etc. He was a little sleepy this morning, but he didn't have to rush out to the bus. Maybe we will survive this...

I am going to call the school to set up an appointment - just to provide the information from the clinics - and I won't tell him about it until I find out how his version of the conversation he had with the science teacher. I don't want him to think I will rush in to 'save' him - he needs to learn how to speak up for himself, too. I hope he does it.

(a little while later...)

I have called the school. I spoke with the A-man's resource teacher - and also found out she is his Learning Strategies teacher. She is going to talk to the science teacher about providing notes rather than having him take the notes. She asked for some patience and said they are just in the midst of preparing IEP's for the kids that require one - I guess there is usually a two week transition time.

Happily, she did comment that the A-man appears to be much calmer this week. She also told me that she thought she would discuss in class when/where doing homework was appropriate. There are 17 in his Learning Strategies course - all of which have special educational needs, so I'm sure the majority of them try the same sorts of avoidance issues. The A-man will not need to know I made this call, and I'll get to hear his version of how his conversation went with the science teacher. (My phone call would have been made just as his science class was coming to an end - he should have already completed the task.)

I asked her about the chances of him having a psycho-educational assesement done. She didn't think the chances were very good (CRAP) but she said she would inquire about it. I am going to fight for this more, if I need to. He had a snapshot of his abiltities done, and he scored in the 91st and 99th percentile for visual abilities, but in the learning end of things, his spelling was in the 14th percentile. Gee, ya think there could be some type of learning disability there? He needs one done, and if we need to, we will pay for another one, but I would rather not have to lose all that time at work - never mind the two thousand $$. What's money if ya can't even spend what you don't have??

The story of S continues...Grade 4.

Okay, so this one is either going to send me spiralling in to a vast pit of despair, or help buoy me up so that I can face the challenges that are sure to come with the new school year. Guess I should just get started, and see where it takes me.

The summer between Grades 3 and 4 didn't see a large decline in the number of visits we made to the Family Services Agency. In fact, things started to worsen on the homefront, and we started to see a big decline in S's interactions with both myself and hubby. He would threaten to run away from home - which would involve running down the driveway, or across the field, or maybe to the neighbour's drive way. He started to get more aggessive when he was angry, as well. He was starting to throw things when he was angry, and on more than one occassion, hubby had to physically hold him to keep him from harming himself or others. Gotta love that "cross the arms in front of the body and just hold the wrists" trick. (But, a warning about that hold - they can flail the head back - turn your face to the left or right when maintaining this hold. Trust me - I learned the hard way.)

I started working in September of this year. It was my first full time job since the kids were born, and it took a bit of adjusting - for both myself and the boys. I had a hard time with the days that they became "latchkey kids" for about an hour, too. But, they would call upon getting home, etc.

As the visits to our councillor increased, so did her concern over S's (and the entire family's) well-being. She suggested alternate respite weekends. What a relief those weekends were. Starting in September, every other Saturday, we would drop S off at the Family Service house. He would remain there with about 5 other children roughly the same age as him, and we would come and get him again on Sunday afternoon. It was just, well, so NICE to not have that stressor in the house for even just 30 hours. And it was a lot of fun for him, as well. They did all kinds of things - like swimming at the public pool, visiting the fair, etc. And we got a chance to spend some one on one time with the A-man. He had chores he had to do while at the house, and things that he would REFUSE to do at home, were not a problem at the house. That just didn't seem right to me, but I guess that is just the way it goes.

After the first 'session' of eight weeks - and, yes, a brand NEW parenting course - it was decided that we would all benefit from an additional eight weeks. And, being the caring and kind parent that I am, I thought that was a great idea. I was told that I didn't need to re-take the parenting course, however. So, another 16 weeks of alternate weekends. As much as I loved him, I am not sad to admit how much I looked forward to those weekends.

On the school front, things progressed pretty much status quo. S was still having difficulty with doing his homework, and just couldn't seem to remember to bring home what he needed. His group of friends seemed to dwindle a bit that year, but he still talked about a number of kids, so I wasn't too worried about that. He would still have his problems on the bus, etc., but nothing really jumps out at me right now. His grades were not very good.

Family Service Agency thought we may benefit from additional help, so a worker started to come in to our home once a week. I guess the primary reason for this was to see how we interact with the boys within our home, to offer suggestions on how to remedy 'real life' situations as they occur, that sort of thing. The aggression continued to rise. I even got to demonstrate the "wrist hold" thingy one night while the worker was here. I was beside myself that something like that would happen when she was there, but she assured me that it was GOOD that she was able to witness it, and see first hand how I dealt with the situation. She was also at the house for the A-man, but to be honest, at least 85% of her time was focused on S.

Sometime in the spring, our two workers met with me to express some concern over what they were seeing with S, and recommended that we see the psychiatrist that worked with their agency. S saw her some time in March, I would say. Her initial findings showed some cause for concern, and she felt further testing should be pursured. I asked at the school about the pycho-educational assessment he was on the waiting list for (had been 2 years) but it looked like there was no end in sight for that waiting list. We discussed options, and decided he had been waiting too long, and bit the bullet and have him tested privately. Over $2,000 dollars for that private testing. I would have been LIVID if the school had not accepted the new psychiatrists finding.

After the very extensive testing - done in Toronto, three sessions, each two hours long - hubby and I received some very shocking news. S was formally diagnosed with multiple learning disorders (including - but not limited to - graphomotor, comprehension issues, and short working memory), plus severe ADHD and a generalized anxiety disorder. Yeah, no wonder he wasn't doing well at school. On the plus side, he has a high-average IQ. So he's not 'dumb' - he just can't learn in the traditional ways. On the negative side, he knows that he should 'get' it, but can't figure out why he doesn't. Oh, and he scored on the high-average level for verbal skills.

I took these finds back to the school and was advised that we needed to have him formally identified, and then implement an individualized education plan that would accomodate his learnging disabilities. But, of course, it was now the end of April, and nothing new (or effective)would be able to be implemented for the current school year. Of course.

So, we went through the formal IPRC process, and the 'committee' accepted the doctors findings, and S was formally identifed as learning disabled. I asked about the anxiety part - shouldn't that be listed under the behavioural aspect of the IPRC? but was told that I didn't want that to be his formal idenification. Hey, I was new to the whole process. What did I know? So, I agreed that we would just stick with one 'label' for the upcoming school year.

Wow - Grade 4 background took a while to share. Part of me blamed myself for being at work during some of this time. Of course the mother guilt has to come out somewhere. I was just gratefull that I was working so that we could 'swing' the cost of testing, etc. That would have been very hard to do otherwise.

I think I will end it here, and see if I can condense the Grade 5 crap, but, then again, there was a LOT of crap...