Deficits and Attention or Lack Thereof

Written on 7-11-09 with an update at the end written on 11-18-09:

I just had a life changing event in terms of Nathan and his struggles, an epiphany, a revelation, an inspiring set of miraculous events!! Okay, well it was to me, but to you It will seem anticlimactic now....

The Problem:
Nathan has had some real struggles lately, grades were BAD, attitude BAD, and our outlook was SAD. I was irritated like crazy at him and worried about him all at the same time. I've been struggling with how much I should help him and how much I should back away; especially lately. He seems to want my help all the time, but should I keep giving it? He's got to figure his stuff out and learn to handle reality and new responsibilities, right?

Here's the scoop, Nathan has many "issues" as we’ll put it, and I assume they are all separate, individual issues, yes he has ADD, and he has Depression and Anxiety symptoms all of which we manage okay with meds and other techniques. Those are labels I had a hard time with at first, but we've accepted them, managed them as anyone does with most things. However, in addition; Nathan seems to have what I think of as "processing delay" (It takes him 5-7 seconds to respond to some stimuli -or reply to a question posed to him -and THAT is a patience tester right there),

This creates problems in school when so much is coming at him at once, instructions, distractions, expectations are not processed as quickly for him as with normal kids. Then, the kid has no sense of the passing of time - he can't tell 5 minutes from 40. He has zero organization ability with his thoughts or with his stuff, no matter how many lists I have posted around the house....he forgets to look at the lists! He has a crazy case of forgetfulness...80% of the time any request we make must be repeated, sometimes SEVERAL times till I get frustrated and yell at him or I hold his hand through the task. He makes the most impulsive choices with no thought of consequence. Then....he doesn't LEARN from mistakes, he repeats them often, and over and over, so punishment never works, and neither does reward. He can't sleep at night, but he definitely can't ever get up in the morning. His emotions are raw: (he wears these on his sleeve, and that's hard for a ninth grader!) Then there's school; I'll briefly touch on this.....the fact that he rarely turns in more than 50% of the homework he needed my help with for 3 hours the night before….he loses it or forgets he had to turn it in till it’s too late, then it’s lost anyway days later by the time I find out it was a missing assignment because papers don’t get graded by teachers anymore but by TA’s and in their own sweet time. So I can’t tell if he’s actually turned in something he thinks he has until days or a week later! He has an absence of listening comprehension skills....never remembering due dates, or assignment descriptions, or that there WAS an assignment. Then he has to re-do the assignments he does turn in because they're illegible. His 504 or IEP or learning plan can only make 3 major accommodations for him. (Due to our large schools and staff shortages) One is sitting close to the board, getting to take tests in a different room than everyone else to avoid distractions to give him the best chance possible, and the third is allowing me to “scribe” for him. But this isn’t enough.

At parent teacher conferences they tell me he’s a GREAT kid, he’s involved and knows the answers to most questions and is kind and respectful, as we all know, but then there’s the “But….” Here comes the part where they say, he doesn’t turn assignments in, they can't read his stuff, he's distracted and can't finish any work in class, he doesn't seem to listen blah, blah, blah.....And the teachers continue on with “We know he's capable of more, because he’s so smart etc….which I appreciate of course but I know that already what I DON’T know is how to help him. If he can’t turn in stuff, he can’t get good grades. If it’s too much for classroom interactions and too distracting for him to focus, and too frustrating at home to do ALL the school work there PLUS the homework every night that doesn’t even make it back to the teacher.
They cant read any written material he works HOURS on and they must ask him to re-do it, but then even HE can’t read it and he gets frustrated and gives up on the assignment altogether. ….What do we do?
Yes. That WAS a brief description.

As most of you know, Nathan has a heart of gold and a strong desire to do everything right. He is kind, gentle, sweet and caring for others. He has strong desire to please others too; and this is frustrating when his intentions are so good and his actions seem to be the opposite. It's hard to know when to sympathize, and when to encourage, and when to be assertive and when to punish. And to be honest all of this is down right ANNOYING most of the time.
While my instincts tell me to be compassionate, my personal frustration at his lack of ability to focus grows and grows.
Kevin has a hard time with helping Nathan because he see's way to much of himself there, and is frustrated that Nathan struggles like he did and much more to be honest. You hope your kids are perfect, when you find out they're not, you avoid the reality. When you're too close to something that you wish would just go away it's sometimes too much, too many bad memories. Trying to help your own child "change" by just explaining how they should do things and expecting change right away is unrealistic. Explaining consequence and personal experience paired with current circumstance brings too much pain. So for Kevin, the end result is frustration, guilt, and avoidance. I totally understand. Though I cannot sympathize because I did not have any of these problems like Kevin can; I do feel this frustration and pain deeply.

I'm losing the ability to think positively when I very rarely look forward to spending my nights of searching for missing papers, books, assignments, pencils, quizzing about homework that's due and not getting anywhere with my questions because he honestly doesn’t remember. Then there's the actual home WORK. Many nights end in tears and giving up on Nathan's part (mine too!) We've tried everything.....Home notes don’t help; he NEVER remembers to have the teacher sign one. (Two in one year completely filled out regardless of what punshment or reward was at home waiting for him) He'd forget the signed ones in his locker, or forget to bring a blank one to school or to class. He always forgets his lunch, his books, his coat, his money, his cell phone. Argh! Getting email communications from teachers didn't help because most were not consistent and I feel like I’m tracking them down and nagging them in addition to dealing with Nathan and his things. These teachers have SO much on their plate, they are not the problem here, it's not their fault either so I couldn't find it in my heart to complain.

I was at the end of my rope with him, almost about to give up, and really, just ready to step back, let him figure it out, suffer the consequences, fail. He HAD to change or he would drown! I was hoping against hope that he'll be okay, knowing I couldn't help him any more than I already had without DOING EVERYTHING for him.
I knew that he'd have to figure it out, or fail and learn from failure I guess. How else do kids learn when they don't listen to or follow advice? Consequences? But the other problem like I said before is that Nathan doesn't seem to learn from punishment or consequence. He just beats himself up for being "stupid" and becomes depressed or anxious that he’ll be “stupid” again. And the truth is, he will, he will repeat the same mistake again days later. So when punishment doesn't work. What do you do? The kid can't be grounded 24/7, he's a GOOD kid, but it's impossible, expecially when he doesn't remember what he was grounded for.

But really it's Nathan with the struggles not me. It's not fair to him when all these issues are paired with his intense desire to do everything right. He gets frustrated too, anxious, and nervous, he worries, he panics. Nathan punishes himself for all he forgets to do. So really do I have the right to be frustrated with my daily struggles with him? It's Nathan who has all the real struggles. It's he who has to figure this out and deal with this for the rest of his life.. I feel helpless, like I can only just stand by, and watch, or do it all for him so he doesn’t “fail” but he doesn’t like that either and doesn’t want me to do things for him. And I know I shouldn’t. So now what?

Hope?:
The above is where we were back in February of this year. I wasn't ready to post this because it was well, heartbreaking. But since then, I have learned much. I knew I needed help. Nathan was full of anxiety, rage, hopelessness, frustration, and I couldn't fix it. He didn't know why SO many things were wrong with him. When I keep telling him he can do anything he wants in life if he tries hard. He couldn't even stay at a task long enough to complete it like emptying the dishwasher. He was feeling like a huge disappointment to himself, and me.

Well bless Davis County, they had a seminar about ADD/ADHD a few months ago that I decided to attend just to see if they had anything new for me, I figured I'd learned it all when we diagnosed Nathan in Kindergarten..... because I'd done my research. I'd kept him off meds till 4th grade with diet, lots of exercise and sleep as our cure until it was obvious meds were needed so he could focus on school work. And back then Kevin was learning his way through ADD, and I'd done a LOT of research for him too.....
But six months ago; with all of Nathan’s struggles since sixth grade, I was feeling depressed, hopeless, wondering if I'm just a bad parent because I couldn't seem to help Nathan like I wanted....so I thought going to this seminar might help. Maybe I could find some people who shared my struggles so I could feel normal for a bit at this seminar.....

Let me tell you what I learned is more than I expected and way more than I could have hoped for!
Turns out that these problems listed above that my sweet Nathan struggles with are all-encompassing with the ADD diagnosis. ALL of it. The not sleeping, the processing delay, the disorganization, the emotions, the learning comprehension stuff, the inability to tell time, the inability to get started or remember what is next…. They all come together wrapped in one big diagnosis. They've found so much more about it now, it's so unlike me not to research this stuff too! I found out we only knew about 5% of what they know now.... You may know what ADD/ADHD is or THINK you know what this is, but when I'm done here you'll probably know more than you wanted to, or maybe this will help you too.

The conference was given by Chris Zeigler-Dendy: http://www.chrisdendy.com/author.htm. She's a mom of two boys with ADD, she's an educator, school psychologist and mental health counselor, she was there to share her story of how she researched and found out all there is to know to help her kids. She's written several books and I recommend ALL of them. "Birds Eye View" is the best.

What I learned:

I furiously took notes and bought her book, Nathan and I stayed up VERY late that night talking about all the amazing things we learned and reading her book.

And to think I almost didn't go because I thought I had all the info there was!

There are two distinct types of Attention Disorders – here they are and some symptoms….

AD/HD predominately Hyperactive-Impulsive
Hyperactivity
• Fidgets or squirms in seat
• Cant stay seated
• Runs or climbs a lot, - teenagers are restless
• Difficulty playing quietly
• “on the go” acts as if being driven by a motor
• Talks a lot
Impulsivity
• Blurts out answers
• Cant wait for turn
• Interrupts, butts into conversations or games
• Acts without thinking or doesn’t understand consequences of actions

AD/HD predominately Inattentive – ADD
Inattentive
• Doesn’t pay attention to details, makes careless errors
• Difficulty maintaining attention on tasks
• Doesn’t seem to listen
• Doesn’t follow through on or finish chores or schoolwork
• Disorganized
• Avoids School work and homework
• Loses things
• Easily distracted
• Forgetful

So Nathan has ALL of the ADD Symptoms….

Other things I learned:

This runs in families and is inherited – 54% of the time – 40% of siblings have it, 50% chance to pass on to children

Medication works 90% of the time!

It poses life long challenges – you do not “outgrow” ADHD

5-12% of people have ADHD in the population, 2% of every classroom
30% have a developmental delay of 4-6 years, so an 18 year old may behave like a 12-14 year old in certain areas of their lives – which explains the homework/responsibility issue
69% of these have coexisting conditions like depression or anxiety.

ADHD is NOT over diagnosed like some people may assume:
Only 32-56% of the 5-12% who have it are treated for it the %’s vary depending on the community they live in – low income vs high etc…
Only 7% of those are prescribed medications from 5 years to 14 years of age and only 1.2 % of those are taking medication from 15-19 years old. So we’re in the minority!
12% of Children in the military are diagnosed, which is ironic since our military will not allow diagnosed recruits on medication

There are distinct Structural Differences in the Brain
The Cerebellum, caudate nucleus, corpus callosium are slightly smaller,
In PET scans of the brain you can see that an ADHD child has a LOT less white matter (connective tissue) and also less blood vessels so blood flow to the brain is reduced as well.
The Grey matter is the same so intelligence itself is not affected. The brain itself if FINE, it learns everything, but it’s not connecting or communicating correctly/effectively.
Neurochemical differences show that the Neurotransmitters are inadequate (smaller, than normal).
Let me explain:
The ADHD brain has 1.7X more neurotransmitters- (dopamine)- the chemical that “carries” the message across the gap between each neuron and returns to the first neuron to await the next message to take again. With too much dopamine; it means there is too much trying to return to the previous neuron to pick up the next possible message, and it often doesn’t get the previous message all the way across to the next neuron’s receptor site. It’s like there’s WAY too many things going on between the neurons, chaos. And sometimes the dopamine does not do its job because it’s too crowded. Medication (dopamine inhibitors) slow down the “recycling” of dopamine so there is less in the way so dopamine can do it’s job easier, carry the message across without interference.
This would explain why my ADD kid forgets what he was doing all the time. He’ll start out at the top of the stairs with great intentions but by the time he’s half way down, he’s “lost” the message, and can’t remember what he was doing there or what he was going to do next, he has to wait for a reminder or for the message to get all the way across. (Processing delay)
(We’ve all experienced that once in awhile, but try to deal with it ALL the time, with almost EVERYTHING you do!)

This affects;
Paying Attention
Following directions
Finishing work
Remembering to do things
Emotions
Being on time
Being able to plan ahead

In addition:
The Norepinepherine receptors are also physically different.
The receptors - or the door to the next neuron - are visually and physically smaller and different, the difference could be compared to an open funnel (normal) vs a thin straw (ADHD).

Seratonin another brain chemical; those levels and those transmitters/receptors are not normal either and also don’t work correctly, this affects emotions, measuring time, falling asleep, waking up, and learning from mistakes, accepting punishment and rewards.

With Slower Brain Maturation:
There is also slower Brain Maturation in ADHD kids. The cerebral cortex reaches peak thickness at age 10 instead of at age 7 with normal children. This is interesting: The cortex thickening peaks during childhood then starts to thin after puberty as unused neural connections are “pruned” down
Contributes to deficits in Executive Function and has a significant impact on academic performance.
There is a 30% Developmental Delay – these kids mature 30% slower in these areas; which definitely explains the lack of immaturity level seen in most Hyperactive ADHD kids (I used to teach elementary school, so know this first hand)
This delay is located in the prefrontal cortex which is responsible for
Higher order Executive Control functions:
• Thinking
• Paying Attention
• Planning
• Suppressing inappropriate actions and thoughts
• Remembering things from moment to moment
• Working for reward
• Controlling movement

Learning challenges
• Slow processing speed, and retrieval of information
• Poor organization
• Slow decision making; difficulty getting started on tasks
• Reduced production with written work

This means parents and teachers must give developmentally appropriate supervision, meaning we must give more support and supervision than for other students at that same age. “An 18 year old is more like a 12 year old; if this student is to be successful you must put the supports in place that you would for a 12 year old.” – Dr Russell Barkley
This explains Nathan’s need for me to help him SO often, now I don’t worry about it, and just help! It’s frustrating when you assume your child should be able to handle certain things by now, because other kids his age do. This helped HIM feel a LOT better and this helped me understand him A LOT more. Now I’m okay with helping him; because this is not his fault, he’s not trying to get out of it, he’s not lazy, he just needs assistance.

Coexisting conditions stats:
2/3 of ADHD have coexisting diagnosis
Percentages are Children with community support vs. not

• Learning Disabilities – 25-50%
• Anxiety – 37%
• Depression -28 %
• Bipolar -12%
• ODD (oppositional defiant disorder) 15-30%
• Conduct disorder -14-43%
• Substance Abuse – 5-40%
• OCD -12-20%


Explaining Executive Function Deficits – Nathan has this too…..
“The Brain’s CEO”
“The conductor of the Orchestra” This is where the brain pulls from all it’s resources and utilizes social rules, memory, experience…..
“This is the control center, really an array of executive functions, orchestrates resources like memory, language, attention to achieve a goal, be a fraction of a second or five years from now”
Deficits or Delays in:
• Working memory and recall
• Alertness
• Activation and Effort
• Reconstitution – Analyzing problem solving, organizing, planning for the future
• Internalizing language (self-talk)
• Controlling emotions
The impact of this deficit on ADHD person, trouble with:
• Getting Started and finishing work
• Remember chores and assignments
• Memorizing multiplication tables
• Writing essays – writing rules, sentence structure, essay rules
• Reading comprehension – remembering what they read
• Controlling Emotions
• Analyzing and problem solving
• Planning for the future
• Multi-tasking – Cognitive memory space is limited, remembering math rules, essay rules etc is difficult while trying to complete an assignment. It’s too much at once.

It’s critical to reduce demands on limited working memory capacity.
For decision making from where should we go to dinner to where do you want to go to college?
Give the person only three choices and eliminate one at a time through deductive reasoning.
Because giving them a whole world to choose from makes it impossible for an ADHD brain to make decisions, it’s too overloaded with it’s own memory trying to grasp all it knows and not getting that self-talk message across. Ahh!

Good news is that these executive function skills, for ADHD brains, continue to improve as their brains mature into their 30’s and 40’s.

More Good News
Medication works!
90% of the time Medication is the answer because it is a physical illness, physical difference in Brain composition, you can’t beat that on your own. Like eyesight, or a broken leg, you need help to get them working right.

Medication benefits?
Increased
• Attention
• Concentration
• Compliance
• Effort on Tasks
• Amount and Accuracy of school work
• Working memory, self talk
• Verbal fluency
• Emotional control

Decreased
• Activity levels
• Impulsitivity
• Negative behaviors
• Physical and verbal hostility


In Summary :
Just knowing ALL of this is part of Nathan's diagnosis, and knowing the resources available to me now has made a HUGE difference in how I view our struggles. He's not a kid who's “out to get me”, or a kid who won’t succeed, or a kid who'll never "get there". He is a kid with ADD. And ADD is very treatable. We increased his meds, got him counseling to learn some coping skills, got even MORE organized. This is something I understand now and can help him with. Something I can “laugh” at when it gets out of control, and then have a WAY better attitude about it all.
As Nathan matures, like Kevin, he will get better at everything, like we ALL do, he may take a few years longer but he’ll get there and hopefully I will always be there to help.
I know now that I should spend the time helping him with homework, that I did when he was 4 years younger, because he requires that support, not because he is just "not maturing" or "not caring about school" none of this is his fault! The never waking up? Not his fault. The disorganization, NOT HIS FAULT! Wow! My whole world just changed, my WHOLE outlook. AMAZING!
I now have resources available to help me with ideas and coping and more importantly, teaching him new skills and teaching him that this is something he has yes, not his "fault" yes, but it is his hurdle to overcome. We all have hurdles. This is his. Overcoming them and being the best we can be is our job.

A BIG change:
So the newest news is that we’ve investigated some different schools because the current local public education system is not conducive to his learning style or needs and I’m not sure a private school would change anything for him. The same problems exist.
We’ve decided to place him in the Open High School of Utah. A state affiliated Charter School that is done online. Each class has a teacher he can call or email or video chat with anytime. His lessons and project are community learning based and learning by doing is the best way to learn! His whole school is located on his laptop, and organized for him in one dashboard of assignments and calendars. Each class is broken up into days of “to do’s” so he always knows what needs to be done that day, and will not miss or forget anything that way. I can manage this with him, we BOTH know exactly what needs to be completed. They are affiliated with BYU’s Education program so he can take any elective classes online with them as well for free. They’re also affiliated with DATC! Free classes to high schoolers there too. So he could begin any career program there of his choice anytime. This also allows us to have school at anytime, evenings, weekends, out of town.... anywhere there is a internet connection. Flexability is what Nathan needs!
This eliminates a lot of stress for him……No books, no papers, limited handwriting, no backpack, no school lunch, no early morning stress, no locker, no home notes, no distractions. His classes are completely flexable and will work with him on an individual basis and tailor the learning experience to his needs as he goes along. He LOVES to work with his hands and is motivated to do any project you can think of. He spent his mornings, days and afternoons in wood shop as OFTEN as he could; we will find more things like this for him to do with this new school.

He’ll take Seminary on his Jr. High campus down the street; and I spoke to the principal of the local Jr High who has agreed to let Nathan in on any school activities he wants or classes there if he chooses to do one or two as well, (band, choir, PE, whatever)

The school provides a free laptop to him as long as he’s in school and if he graduates it’s his to keep. The principal there is great too, and has talked with me on numerous occasions already.

We’re really excited for this opportunity that has presented itself.
Nathan is relaxed and excited about school now instead of just the opposite.
Nathan just wishes he could start NOW! That is something I didn't expect.
Here's something you didn't expect: You just read a 9 page article (Word, Single spaced, Times New Roman 12type font)


Update as of 11/18/09 -

Nathan is THRIVING in his school at Open High. I didn't take more than a day to get used to this new way of learning; He's getting A's! He is motivated and LOVES the work he's given daily. He completes his assignments on his own;he finds answers to his questions; and looks forward to school! The flexablity this school offers is priceless for Nathan. He can do school daily when HE's ready and for as long a period of time as he feels he can; he can take as many breaks as he needs ,and and at the same time he is motivated to do his best at all times.

The curriculum is really neat; I'm enjoying learning right along with him. Their approach is a refreshing blend of very interesting topics, thoughtful discussions, "out of the box" learning approaches, zero busywork, challenging and memorable/useful assignments to complete daily and low stress "exams" with a very flexible timeline. The teachers are interactive and complementary; they give it a personal touch and they truly care about these kids. I've gotten many phone calls from teachers checking up on Nathan and myself.

The technology Nathan gets to utilize every day is so above and beyond what he'd get in a traditional school. He's becoming so comfortable with the internet, the computer itself, and the technical tools the teachers are using. Some of the daily assignments include discussion boards, voicethreads, Youtube video clips, Google maps, docs, and email, interactive applications, video chat, and much more; group projects even!

Nathan has GREAT friends that he chats with online almost daily. They've had an activity at Lagoon so they all got to meet too.

These kids are very cute, creative, and thoughtful. There are kind words, "netiquette", and polite encouragement of each other with assignments and social interactions as well.

It's like all the previous stigmas of Jr High are over for all them. These kids are very sweet to each other; and with this equal playing ground environment there's no room for "cliques" or judging others for anything but what they think, what they know, and they all have equal opportunity to express ideas. And like the amazing teachers; the kids are SO resourceful and out of the box thinkers themselves.

Nathan has confidence. He is doing very well. He has Spanish and Seminary at the Jr. High every other day in the mornings. The afternoons are for Open High and Geometry and Health (BYU online classes) And two evenings a week Nathan is at the DATC working towards a technical certificate. He's currently taking "Computer Tech" there which is part of his High School requirement.

He has lots of variety and daily interactive opportunities. This school has helped reduce distractions and chaos for Nathan; his anxiety and depression rarely surface anymore. His ADD will always be there; but these tools are here to help him succeed and stay organized. A kid that can't keep track of his basic daily tasks; really has way to much to deal with when traditional school includes strict deadlines; low flexibility; no one to help you stay focused because everyone and everything is distracting! When you add homework and only verbal instructions for 8 classes for a kid with poor memory, books, papers, backpacks, lunch, pencils, paper, other school supplies to keep track of it gets overwhelming for my ADD kid.

With the online high we've eliminated all of this and it's all contained in one laptop! All due dates; assignments, curriculum, assignments, study guides; all of it.
And believe me it's hard to lose that laptop when I have it strapped to his desk. :)

We're very happy that he is doing so well; evenings are much less stressful for all of us. But most importantly; Nathan is happy with this choice and he is thriving!