A long and winding road – with light up ahead

[Anonymous]

Greetings to all!

I am excited to see the website and look forward to great things to come, especially in sharing the information on the site with others. It’s such an overwhelming relief to finally KNOW what you’re dealing with and that you KNOW you’re not crazy!

I know that this site is aimed mainly towards adults with ADD, but as a parent, I am hoping to gain insight and information towards the next few years as my teenaged son evolves to adulthood. I will apologize in advance for the length of this post – this has been a long time coming for us, so your patience is appreciated.

We went through several years of frustration as we challenged teachers, administrators, and board staff, and all the way along, most of our extended family members had no idea of what we were going through, either, or of they did, no idea of how they could help. We spent so much time mired in red tape, and not really having many (useful) resources to turn to; we often sighed and commented that NO ONE should have to advocate this hard for their child, but at the end of the day, we knew that if we didn’t, no one else would. We are his parents, so to us, it’s part of the job description. (Sadly, we also recognize that not all parents feel this way.)

Our youngest son was showing symptoms of poor concentration, etc. in kindergarten, and as parents who had worked with other people’s children for 10 years, we started looking for answers for our own. Interestingly, one of the first things we identified was sleep apnea, which is often one of the last things to be ruled out on the list. As it was explained to us, sleep apnea doesn’t allow a person to get the deep REM sleep we all need; instead, you sort of “skip” across the surface of sleep because you keep waking up, not able to breathe. At the sleep study, we were asked if J. woke up sweaty (he did); seems that his body was working harder at night to breathe than most people would if they were running track.

A follow up showed that J.’s tonsils were very large, and his nasal passages, etc. were quite small, and the tonsils were cutting off his air, so the tonsils were removed and the apnea was resolved – but not the issues with concentration. In Grade 2, we left our December parent-teacher interview and went directly to the principal’s office to request testing, both for giftedness and for a learning disability. We were told that the board’s waiting list was several months long; we said we’d wait. As it happened, we moved to a new school at the end of that year, and as I introduced myself to the new principal in June, I told her that we wanted to speak with her in September to arrange for testing. She asked what we would be testing for, and I told her what I had said before. She looked at me directly and asked if I understood that they were two separate tests; I said yes, but that it didn’t mean that they couldn’t both be present at the same time. Finally, we had found someone who understood! (I found out much later that her early teaching background was special needs – huzzah!)

Because we kept advocating for him, testing was done in Grade 3 which confirmed ADD-inattentive type, but there were still issues. Not long after the testing was completed, our ally was reassigned to a different school, and while we were disappointed, we were still grateful that the ball was now rolling. Following the initial evaluation, strategies were to be set up, and accommodations put into place, but because we had no IEP (Individual Education Plan), we learned that individual teachers were not aware of any of these.

Each year, we would get calls from various teachers about homework not completed, and each year, we pointed out that these strategies were in his file, available at any time. One of the strategies we found worked was to have written instructions available so that J. could refer to them any time, plus he could bring them home and we could review together. Understand that we would never do his homework for him, but had no problem in trying to talk him through it from a different perspective than what was presented in class.

Teachers would call and report that they had given him “more time”; we explained over and over that “more time” was not what he needed, because if he didn’t understand what was required in the first place, he could sit there for days and still not get anything accomplished.

A particularly low point came at one interview; as J. was very active in Scouting (often a great group for ADD’ers, BTW), we brought his Cub sash and handbook with us to illustrate what he was capable of when he KNEW what the expectations were. We were stung by the next comment: “But you’re both Scout leaders”, as if that explained it all. We replied, “But we’re not HIS leaders”, knowing full well that each badge was a record of his own accomplishments, with little or no modification required. Once again, we had the conversation about the strategies, etc. that were in his school file and asked why we could not just get an IEP in place. We were gently informed that we would need to have an evaluation done; we gently pointed out that one had been done a couple of years before. We were then gently asked if the school could perhaps have a copy, to which we not-so-gently replied that since the board had done the evaluation, it had been in his file all this time. Were we actually being told that this child wasn’t getting the help he needed because no one had looked in the file??

Based on this exchange, we approached the board and asked for another evaluation, since we were still not seeing any real improvement. We were told that his results would be reviewed; after only a day, we were brusquely informed that no further action was warranted.

The total picture became that much clearer last spring when a new (privately-funded) evaluation pointed to a communication disability as well as a severe short-term memory dysfunction (think of the film “50 First Dates”), on top of the ADD-inattentive type that we already knew about. In addition, we learned that while J. is not quite in the “gifted” range, his Grade 8 brain is operating several grade levels ahead. Vindication! While we would have never wished this journey on anyone, we were so relieved to finally know what we were dealing with! We did mourn a little for all of the lost and wasted time, but tried to stay positive and focus on what lay ahead of us, not what was behind. It was like a light bulb had suddenly come on; we understood that it wasn’t J.’s behaviour, but how his brain is wired. This young man can recite so many facts from Guinness, or recall a quote from a movie we saw six years ago, but we still have to tell him every day to brush his teeth! (Still trying to figure out how that works!)

Once we had the report, we gave a copy to the principal so that we could hit the ground running in September. We were finally able to get an IEP into place at school, which includes different strategies than before, and the introduction of assistive technology. Over the summer, we started him on a “training” program – we called it physiotherapy for his brain – using the Brain Age and math skills DS games. (Never thought I would have to tell my son to go play his games – and never happier to do it!)

We have seen such an improvement in J.’s self-confidence over the past several months, and are so proud of what he has achieved so far this year. Our December parent-teacher interview was one of the most pleasant we’ve ever had, because we were all on the same page right from the start. We are still fine-tuning this as much as we can before he begins high school in the fall, but it is so exciting to finally have a more positive spin on the whole situation! From a kid who once told me “sometimes I just feel so stupid”, he has begun to see the humour in his diagnosis, especially since we have explained that we are still unlocking the unique combination of how his brain works. (He was very tickled to see the AD/HD T-shirts – they are exactly his brand of humour!)

Several years ago, we received a brochure that outlined 12 different ways that people learn: visually, musically, by writing or repetition. All of us have some degree of each of them, and this concept has made our grasp of learning so much more vivid. Too bad this information wasn’t around when we were in school, because I know that this would have made a huge difference in the way that information was presented, as well as retained. We have also always been strong advocates of structure and routine, and this, too seems to help, because it creates boundaries which will become more flexible as he grows older and increasingly responsible for himself.

We know that this next chapter of J.’s experience is going to be an important one, but we are looking forward to meeting it head-on. We will still have days where we feel like we’re stuck in the mud, but when we see how far we’ve already come, we take a deep breath, and then take our next step.

REPORT ABUSE

[Rick Green – Founder of TotallyADD]

Great stuff! Love the part about how we learn. ADHD is so individual. Which is kind of what makes it fun when you have the diagnosis, cause you can go figure out your own flavour–where you fly and where you flounder.

R

REPORT ABUSE

[veronica]

hi lisa!!

wow! this is so interesting to read about everything that you’ve gone through to make sure that your son feels like his “dis”ability is a gift.

couple questions….

you wrote:

The total picture became that much clearer last spring when a new (privately-funded) evaluation pointed to a communication disability as well as a severe short-term memory dysfunction (think of the film “50 First Dates”), on top of the ADD-inattentive type that we already knew about.

can you please provide more information on this? i blogged about it the other day…. fifty first dates. think it may be interesting to see if there is anything there that can assist me.

and also…

Several years ago, we received a brochure that outlined 12 different ways that people learn: visually, musically, by writing or repetition. All of us have some degree of each of them, and this concept has made our grasp of learning so much more vivid.

do you have any additional info on this? anything would be helpful.

thank you so much for sharing. i smiled when i finished reading your post. it feels good to know that there are still folks out there who fight the system to ensure their kids greatness is reached. my older girl has down syndrome and my aunt has fought tooth and nail to have her remain so high functioning.

good day to you!!

~v

REPORT ABUSE

[Patte Rosebank]

I’ve found that things are much easier to learn when you set them to music.

Ever since the “Schoolhouse Rock” PSAs aired on ABC TV on Saturday mornings in the ’70s, history teachers have reported hearing kids quietly singing the Schoolhouse Rock version of the Preamble to the U.S. Constitution, during history exams. And the “Multiplication Rock” segments are quietly sung by students writing Math exams.

Another example:

I came along after the New Math phase of education. I remember asking my mom about it—since she’d been a teacher during that time—and her explanation about using bases other than the standard base-10 made no sense to me whatsoever. I mean, why learn how to do math with bases that nobody used in the real world…well, nobody other than mathematicians and science geeks? And what was a “base” in the mathematical sense, anyway?

Then I heard Tom Lehrer’s “New Math” song. I loved (and still love) the chord progressions in the accompaniment. But, more importantly, I decided to take out a pencil and paper and try to follow along with the calculations Tom’s lyrics described. When I was done, I understood the whole concept and method of New Math—even the purpose of it. Namely, to make sure you were so clear on the method of doing the calculations that you could do them using any base.

And Tom’s talents weren’t just limited to teaching math. He contributed some classic songs like “Silent E” and “L-Y” to the original 1970s version of “The Electric Company”, which used songs and comedy to help millions of kids—even kids who were functionally illiterate—to learn reading and grammar. That was the REAL “Electric Company”, with Rita Moreno and Morgan Freeman in the ensemble cast. Don’t be fooled by the crappy show that PBS now calls “The Electric Company”. It just took the name and the “Hey, you guys!” catchphrase, and threw everything else out the window.

Tom Lehrer also helped science students, by setting the Periodic Table to the music of “The Major General’s Song”, from “Pirates of Penzance”. The elements aren’t in the order in which they appear in the Table, and several new elements have since been discovered, but it’s hugely helpful to be able to be able to rhyme off most of them. It’s also very weird to be sitting there, singing, “There’s antimony, arsenic, aluminum, selenium, and hydrogen and oxygen and nitrogen and rhenium…” And it makes a great warm-up for enunciation.

Music can also unlock very deep memories. Sometimes, when I’m singing in a nursing home, there’ll be a person with such severe Alzheimer’s that they can’t even speak. But when I sing a song they remember, they’ll join in, and remember every single word. And it’s not just the very ill who experience this. One of the first records I ever had was “Animal Songs by Anna Lenti”. I loved that record, and I played it so many times I wore it out, but could never bear to throw it out. I spent years trying to replace it. I finally got a replacement (in the form of a CD copy sent to me by the composer’s son, who’d seen my posting on a music forum), and the first time I played it, I started singing along with it, and remembered every note and every word…despite not having heard the songs in over 20 years.

REPORT ABUSE

[Anonymous]

[ … three, six, nine … twelve, fifteen, eighteen … twenty-one, twenty-four, twenty-seven – thirty. Three is a magic number … ]

Both my husband and I grew up in the ’70’s with the original Electric Company (woot!), Schoolhouse Rocks, and the original Sesame Street (we knew Cookie Monster before he became Veggie Monster … om, nom nom nom!). I would hazard to guess that many of us from that era had these “soundtracks” running through our heads as we worked on math problems, anatomy, etc. (and probably still do). And we were so excited when we purchased the DVD of ALL the Schoolhouse Rocks segments – we could now share them with our boys at will!

Regarding the short-term memory deficit and communication problem, the way that it was explained to us is that J.’s brain is operating at high-performance level and by the time he is able to communicate that verbally, a small portion of it is lost in the processing; by the time it gets to his hand to write it (even keyboard), much of it is gone forever. (Imagine a Porsche stuck behind a tractor-trailer, going up the highway at 30 km/hr – with its flashers on – and there is NO way for you to get around it … you’ve got all that power available, but no appropriate outlet.) This is where the assistive technology will be an asset; J. can dictate his thoughts (like essays) and have the words appear onscreen, to be reviewed and formatted at a later time.

So far, much of the information I have seen online regarding short-term memory deficit deals with aging and/or brain injury, neither of which applies to J.; he is only 13, and has not suffered any traumatic brain injury. Wish I could say the same; a moderate concussion a year ago made me acutely aware of how the brain works – or not. One “benefit” was that I suddenly had insight into J.’s world; I couldn’t remember why I had a spreadsheet open, or how to use a pen, and while I could tell you the birthdates of my children, it would take me a few minutes to do so. I knew that, with time, my own inability to communicate would resolve itself – but his would not. Lesson learned. (You don’t want to know my Brain Age scores during that time <shudder> …)

At least most people have heard of ADD/ADHD; it’s when we mention the short-term memory deficit that people’s expression changes to “what?”, so we have found the “50 first dates” correlation to be helpful. In the past, we have used checklists for the simplest things – brushing teeth, showering, and other daily routines. We have also found that we can’t make assumptions; if I say “clean the bathroom”, MY version of clean could be very different from someone else’s. Solution: prepare a step-by-step list of what a “clean” bathroom is, then keep it in a binder (or index card) for reference as needed. Just like we all use cookbooks, and I would venture to say that there are many recipes that, after we’ve made them X number of times, one day the recipe isn’t needed. So now we need to translate these strategies to schoolwork … still working on that one. And if I find anything really useful, I will be happy to share it!

Through our school board, we received a brochure entitled “Nurture Your Child’s Intelligence” which listed eight ways (intelligences) in which we all learn. [“For each child, the question is not “how smart is this child?”, but “how is this child smart?”] Music is one of them, for all the reasons Larynxa has listed above (we are very familiar with Mr. Lehrer in our house!) The others include word smart (verbal linguistic), number smart (logical-mathematical), picture smart (spatial), body smart (bodily-kinesthetic), people smart (interpersonal), self smart (intrapersonal), and nature smart (naturalist). Others that have been proposed include spirituality, humour, and creativity. The brochure lists examples of each intelligence, plus resources and activities designed to nurture your child’s intelligence. (Finally: a curriculum for parents!)

This link may help to explain (and includes a test so you can see how you learn): http://www.bgfl.org/bgfl/custom/resources_ftp/client_ftp/ks3/ict/multiple_int/what.cfm.

The way that I explained this concept to J. is that we all have varying degrees of each “intelligence”, so we needed to find out how best to “unlock” his processing. I know that I am a very visual person, so I seldom go anywhere without a pen in hand; even by jotting something on a scrap of paper helps me to retain it later. I also respond well to colour, so colour coding subjects in school (history is the red binder, math is the green,) may be helpful for some. We know that J. is affected by music; one image I have that we were never able to capture on film is him sitting on the couch at 3 years old, with his brother’s mini keyboard in hand and the headphones on, rocking out to his own tunes. Within a couple of hours, he had worked out the alphabet song, all on his own, and by ear (he wasn’t reading music yet). How cool is that?! At 13, he is a budding chef, often reading recipes like novels; at one time, we had more varieties of mustard in our fridge than I knew existed because he wanted to try them out. (Not to mention his nom nom nomming his way from one end to the other of the Great Food Festival – good thing that kid doesn’t have any food allergies!) He is learning to be creative, while developing necessary math and other skills (2 x 1/4 cup = 1/2 cup) without realizing it.

I was fortunate in my youth to have a Girl Guide leader who was, in her professional life, a special education teacher. In addition to our “regular” Company, she operated an in-school program for the girls in her class, a couple of hours each week. There was a wide range of issues to deal with, including developmental delays and Down Syndrome; the girls that were able to joined us for hikes, camps and other activities. The program was modified/tailored to individual needs, but often, was still taken directly from the book, with little change from the original. To us, they weren’t “special” – it was the way they were, the same way that some of us wore glasses or had braces. Instead of looking for ways that we were different, we found ways that we were all the same. This is what I knew growing up, and we are instilling the same outlook (I hope) in our boys. We (my husband and I) have always believed that understanding comes with education, and that prejudices simply should not be tolerated. At the same time, standards should not be lowered; instead, raise your expectations, and watch how children stretch to meet them! My biggest turn-on is watching someone (any age) learn – that “AHA!” moment when understanding dawns is like no other feeling in the world!

(And thanks for your words of support; it really means a lot – more than you can know.)

REPORT ABUSE

[veronica]

awe… i’m so happy you joined the sight lisa!

thank you for all the information and the even more wonderful things about your son and your family. it is truly helpful and a happy reminder that we all bare gifts on this site… that we need to hone in on. i believe at times it’s a little difficult to stay on track.

i believe both of my children are the musical learning. my son hears a beat or a song and is so quick to start stomping and rocking his head (he’s 2). he LOVES music. the usual words to come out of his mouth when mommy finally gets in the driver’s seat are “mommy, song on, peas”.

my 6 yr-old can watch a movie or listen to a song and know a good majority of it after the first try. you should see her recite movie quotes… it’s quite entertaining. and if she stumbles, she stops and thinks and then wham! she gets it verbatim.

and my girl with downs… she is a musical child as well. she dances and sings to just about every song she hears.

i find myself singing (whatever i need them to stop doing), in lieu of yelling, when the kids are getting on my nerves. which makes them laugh. and in turn lightens up the mood and makes them stop annoying mommy. daddy is a music buff, too. self taught drummer.

i will look into all this information that you’ve supplied. i started nodding in agreement as you wrote “Regarding the short-term memory deficit and communication problem, the way that it was explained to us is that J.’s brain is operating at high-performance level and by the time he is able to communicate that verbally, a small portion of it is lost in the processing; by the time it gets to his hand to write it (even keyboard), much of it is gone forever. (Imagine a Porsche stuck behind a tractor-trailer, going up the highway at 30 km/hr – with its flashers on – and there is NO way for you to get around it … you’ve got all that power available, but no appropriate outlet.)” dude, this is so me. i have all this information running in my head. things i want to blog about, thoughts i know will be useful later, but the majority of the time i can’t get to it. and when i sit there later and try to think about the great idea i had… it’s gone. *sigh*

my hubby said i should write a book, but for the most part i don’t have time to sit and write. and when i do have time… i’m usually not inspired to do so. that’s the thing about writing… you have to have the flexibility to just stop what you are doing and write or “voice notes” your thoughts. being a working mom i have no time for that.

any hoots, thanks again! all of this is really helpful and insightful. i can’t wait to hear more about your journey with J.

(((hugs)))

~v

REPORT ABUSE

[Author]

Posts