Maintaining one's spirit

I hate how the daily grind of living with hidden disabilities makes me feel. I hate that I feel powerless. I hate that I have to keep my paperwork perfect and watch every word I say or write, but that the others can be as incompetent as the days are long with no consequence. I hate that I have no say. I hate that I have to take their careless remarks at face-value, but that I cannot make similar remarks to counter theirs. I hate that no matter what actions I take, how sympathetic I am, and how reasonable, balanced, and objective my observations and statements are, I am not listened to.

I am the enemy and nothing I say is true and it is all geared to take advantage of the system. I would weep if I had the energy. I would scream if it would do any good.

All I can do is plod on, day after day. This is the definition of insanity. Doing the same thing and expecting a different result. It's the end of the school year, and I've convinced one person of the truth of my words. One. She's promised to explain everything to the teachers next year (if she is still around - that's ominous). Well, I did that this school year, to no avail. Perhaps because she is one of them, she will have a different result from mine. After all, what do I, the parent, know?

I could go into my bona fides:

1. Profession: Solutions Architect in an approximately 14,000 person company for the Training and Simulation Service Line, employing about 1,000 people, where I design and develop solutions, methods and approaches that apply technology as required to training, education, simulation, and analysis problems for the government and other customers.
2. Professional Experience: Applied all stages of the ADDIE model (Analysis, Design, Develop, Implement, and Evaluation) for training and professional education courseware development. 
• Determination of course requirements, learning objectives, desired mastery level in terms of Bloom's taxonomy, identification of essential skill requirements for government professional development and training
• Design of courses  for government professional development and training
• Development of courses for government professional development and training. undergraduate math, graduate engineering management, and continuing education courses
• Teaching at the college level and for professional development courses. 
• Individual tutoring of students at various skill levels, including students with LD.
• Development of course evaluation criteria and student rubrics and evaluation instruments
• Implementation of course evaluation surveys and student testing
• Development, design, and application of analytic studies and methods to include the development analytic instruments (qualitative and quantitative) for various objectives to include education.
3. Professional Skills: Articulate professional with experience speaking to and briefing corporate executives, general officers, Congressman, and others in formal and informal settings. 
• Approximately two dozen peer reviewed publications, including three journal articles, one of which I was the primary author.
• One of six nominees for best paper in the largest international conference dedicated to training and education.
4. Professional Education: Advanced degrees in math and math related disciplines that include an emphasis on instrumentation, statistics, data analysis, and data analysis methods.
5. Personal Experience: Diagnosed with ADHD as an adult, having a significant repertoire of tools, techniques and coping mechanisms that have led to significant scholastic and professional successes. Work with my son daily to develop similar skills.
6. Informal Education: significant reading about ADHD, LD, executive function, special education processes, etc.

This would do little good and only antagonize them more.

Nope, it's clear that I know nothing, and my word cannot be taken. How do they manage to make me feel so small, insignificant, irrelevant, and incompetent? How do they make me feel like nothing I do, nothing I can do, matters?

I hate the way this process, dealing with these hidden disabilities, makes me feel.

Trying to understand

I am some one who tries to understand where someone else is coming from.  Developing this understanding for teachers is no less of interest and more important to me because I have to work with them everyday. The heart of negotiation is understanding the other person.  Being a woman who went to college and joined a sorority, I have many, many connections to teachers, a good number of whom are special educators. This allows more, or perhaps forces me, to more outside my narrow field of view with my son and our struggles.  

Still, I've struggled to understand some of the venom I see regarding pay, working hours, the job requirements, and time off from the teachers and the modern day memes that float around.  Teachers have never been paid well. Recognizing that no one gets paid the average and that the data sources are undisclosed, and possibly skewed (Does it include supervisors, administrators, and teachers aides or only qualified teachers in the classroom? Your elementary school math teacher should be able to explain why it matters.), the average teacher salary is higher than the median income for a family of four. I have three sharp memories from eleventh grade English. One of them was of my teacher complaining every single day that she didn't get paid enough to do her job. Teachers having low pay is nothing new. To get paid well, one goes into a STEM.field.  

Then there are the days off. Well, facts are facts, teachers get many, many more days out of their "office" than the rest of us who work.  Better yet, when their children are out of school, they have many few days they have to make childcare arrangements for them.  This can run thousands of dollars in the summer alone and comes off the top of the non-teacher's salary. I am not talking about the choice to find something and somewhere for the children to do and go in the summer; I am talking about necessity. Don't get me wrong, I am not complaining.  That's the choice the non-teacher parent made. However, to compare apples to apples you need to prorate time off against total salary and lop off the top childcare expenses to get effective salary.  I know this isn't a logical argument, though doing this little exercise in math is enlightening.  It doesn't take the teacher to STEM salaries, but that's the nature of the beast.

Work hours. It's hard to know where to start on this one.  No one I know working in a professional occupation works a forty hour workweek.  No one. Having teachers complain about a fundamental work requirement (not one that was hidden either) that we all also endure is insulting. I'd be willing to take it out of the prorated math against salary above if those other salary situations being compared had the same consideration. Again, the arguments aren't logical.

The last complaint of work conditions has merit. It's why I never even considered being a teacher. I don't know how it escaped the attention of our teachers of today, but the thought of dealing with administrators and parents at the expense of actually teaching was more than I could bear. However, I've always felt that this argument isn't, or rather shouldn't be, about the number of hours preparing for class or grading papers and the low salaries that attend it. No, it should be about the teaching itself. Everything should flow from that single source. Now, instead of projecting themselves as whiners who just want more, they are experts who care about our children's future.  It is the truth, too.  

I made a lot of counter-arguments. What did I learn?

I don't think that any of those reactionary postings, editorial, and blogs are about the logical issues I already discussed.  I don't expect my teacher friends to agree with my arguments, but neither are those arguments the point. Sitting at my desk this morning, preparing to work on a "snow day," I came to the realization this morning that the complaints are in reaction to the snide way in which people devalue our teachers' contribution by remarking about how "lucky they are that ..." Often for people, who not only never set foot in a classroom, but likely, don't spend much time helping with homework or sharing traumatic situations at home that could affect learning and behavior or any number of similar things.  It's the superiority and disdain that makes the reaction an immediately defensive one. 

I still believe the teachers and teachers unions would do much better ignoring everything except what should be done in the classrooms and homes to improve learning. Ignore pay and work hours.  It's a losing argument and wins no sympathies.  Also, the burden of testing needs to be ignored, or rather reframed.  Stop focusing on "not do" and start focusing on "do." Why is there testing? Why are there common core standards? Neither are evil, and both have their roots in well established principles of instruction.  These are not the enemy.  However, everyone is so focused on what they don't want and ridding the system of what is wrong, no seems to have a cogent opinion of how to meet the identified needs with what should be done.  Throw out the bath water and the baby.

I think that I do understand now.  It's a question of emotion and value.  Until those needs are addressed, no progress with be made.  

Tired ...

I've been feeling tired and overwhelmed lately, but mostly tired.  There are all sorts of stresses lately, which I'll keep to myself.  No doubt, these aren't helping the situation.  Still, my son's ADHD and LD needs wipe out any energy reserves I may have.  I probably spend 20 hours a week reading, writing, responding to emails; helping and following up on assignments: homework and classwork; and generally ensuring that my son stays on task.  It's hard enough keeping up with my own tasks; keeping up with his is more than I can bear, anymore.  Rather, it's the follow-through for those tasks that causes the most difficulty.

I got two emails home today.  One was in follow-up to a concern I had.  The other was a teachers' concern.  Taking the second first, my son has apparently been engaging in self-stimulation behavior that not only prevents him from doing his schoolwork but also is affecting his classmates.  The teachers want me to address this with him.  I sent an email to his Occupational Therapist.  Really, I am not in the classroom.  Just what exactly do they expect me to do to deal with this neurologically based need?! It makes me want to scream.  The teachers clearly are not qualified nor have the training to deal with ADHD in the classroom.

The first email asked me why I spent 30 minutes looking for answers in the textbook that the teacher had given me in an email.  I hardly even know how to respond to that one.  ... Hmm, because I wanted him to understand how to find the information and read it for himself rather than just giving it to him. ... I guess that such an idea is novel to these teachers.  I don't get it.

How in the world can I educate my son's teachers about ADHD when they (1) don't want to learn about it, (2) take offense when told about it from me, a "non-expert", and (3) refuse to take the actions shown to be helpful, in the first place.  No win, and the mom's to blame. 

I wonder, what do I do?  Do I let him fail?  What are my recourses when the actions taken in the school are so minimalist?

I no longer know how to help him. Waiting on a psych referral so we can adjust his meds and get him into so behavior training, which will be another drain on my time, energy, and pocketbook.

It's not that I find it boring ...

I think that I am getting tired of hearing ADHD described as "have trouble doing tasks that you find boring."  That just isn't right.  It misses somehow. 

Boring: causing boredom
Boredom: the state of being weary and restless through lack of interest

Don't get me wrong.  I hate being bored.  It's just that this description feels like it almost is mixing up cause and effect.  A better description that isn't as nice of a sound bite goes like this:

Tasks that are insufficiently rewarding or that have delayed rewards are incredibly difficult to start, stay focused on, and complete. 

Rewarding: giving you a good feeling that you have done something valuable, important, etc.

See the difference?  It's not that the tasks are boring; it's that they are not rewarding.  Our brains are wired to receive rewards through interest; but it's the lack of rewards that is the problem.  Or maybe, it's because "lack of interest" has the connotation of "doesn't care" when it truly is lack of interest.  Is anyone really interested in folding laundry or filling out forms?

Interest:  5a :  a feeling that accompanies or causes special attention to an object or class of objects :  concern  b :  something that arouses such attention  c :  a quality in a thing arousing interest

I don't know.  I don't find forms "boring." I find them fantastically and exceedingly difficult to the point that I have trouble reading and making sense of them.  And while, doing the laundry is boring, that isn't why that task is difficult to finish per se.  Truth is, I will start it and stop in the middle for no discernible  reason and never even notice that I did so.  And putting something in the mail ... well, I contend that this is a near impossible task and am amazed that anyone at all is able to do so with regularity.  My sister tells me that this task is easy, but I am pretty sure that she is having a joke at my expense.  I mean, really!?  No one could possibly find that task easy.

Well, I've got to go.  I am well-overbooked today.  Wish I had time to clean up the format of this thing, but I don't.  Maybe another day.  Just so you know, it's driving me crazy!

I am ADHD ....

I am ADHD.  Sometimes, I think that I will develop my very own 12-step program around this statement.  Between that and the Serenity Prayer, it may be enough.  School has started again, and with it, so has all of the IEP madness.  That's Individualized Educational Plan.  It seems that education is designed to be cookie cutter unless you have a special plan to make it otherwise, and there are all sorts of hoops you have to jump through and magic phrases you have to say to make it so.  Even then, the plan isn't actually a plan, nor is it really even followed.  At times, I am not sure it is even looked at.  All the evidence of my experience suggests that it isn't understood.  Not really.  Not even by the special education specialists that I've had to deal with.  Now don't get me wrong.  I personally know three special education specialists.  I went to college with them, and they are fine women.  Every interaction that I've had with them since entering this special education minefield convinces me that they care and truly understand their field.  Perhaps, that is what makes this path so difficult.  I can't help but project the same competence and caring to my son's teachers, and yet the results are so drastically below my lowest and most minimal expectations.  Perhaps, it is because he is thrice gifted.

Thrice-gifted is what I call it.  He has multiple learning disabilities in reading, writing, and spelling.  You could call it dyslexia, but that term is more obscuring than it is enlightening.  Folks generally jump to, "Oh, you mix up letters."  Then, they think of all the mixed up message-memes they've seen on Facebook and think it is no big deal.  Well, first, dyslexia is much more than jumbled letters in the word nor does it always present so.  Second, the troubles presented by it can affect every aspect of the use of written language.  With my son's teachers, it is all made worse by the fact that they see him as a good reader since he has very good comprehension.  Again, those things aren't necessarily related and actually reflect good compensation skills more than anything else.  The trick in the assessment is in the details.

Of course, he is also ADHD ... the name of the blog, you know.  He presents as the combined type: day-dreamy (i.e., inattentive) and hyperactive.  He has planning and organization difficulties (i.e., executive function deficits) as well as working memory problems and processing delays.  The former affects every aspect of learning from solving a math problem to writing an essay, which is only made worse by the learning disability.  Problems with turning in assignments and homework, keeping a notebook, and the like should be obvious, but aren't.  The latter affects sequential and step-wise problem solving, following directions, recall, and recognizing and following cues.   Impulsivity, hyperactivity, and attention issues don't help any of these things either.  Not obvious from all of the labels I just shot out is the problem of interpretation.  My boy is concrete and literal.  Not sure if it is related to the LD or the ADHD or just to the brain-development stage, which is on-average three years delayed in children with ADHD, but he needs things explicitly and clearly explained, preferably with a modeled example, followed by a lead example.  Of course, this is also best practices for teaching in general and for teaching ADHD children in particular.  From what I can tell, such is never done.  If it is, it isn't done in a way that cues my son to pay attention to it.

Lastly, my son is gifted.  He's in Honors classes this year.  I am hoping it will spark more of his interest with just enough adrenaline to keep him moving.  The adrenaline spark is an important one to keep those of us with ADHD moving.  Apparently, it has to do with too few dopamine and some other receptors I can't recall the name of now as well as fewer pathways, or some such neurological science.  At any rate, it requires more to arouse the ADHD brain and the reward pathways don't work as well.  Adrenaline helps, this much I know.  There's nothing like a looming deadline or a challenge to spark interest.

Of course, all this makes my son present as the poster-child for the gifted ADHD male student.  He's well behaved, well spoken, and smart.  He doesn't turn in any of his work and, therefore, must be lazy.  "If only he would try harder."  He's trying harder.  We are all trying harder.  Now, could you please just help me and help him know what his assignments are, when the are due, and what the instructions are to complete it?  I'll make sure he gets it done and it gets to school.  If you could also help him to remember to turn it in, I'd appreciate it.  I cannot divine the information.  I've tried and my divination powers are all tapped out.

Sigh ... He's turned in no work for his Social Studies class, yet, and no answer to the note I sent to school.  So much for "faded support to help him with organization."  Hah!  Do they not cover any of this in teaching school?

Wish me luck.  I may need it.

Kids and their math ...

So after a bit of home testing, I am dismayed at the gaps in math both my boys have, primarily in word problems, fractions, and percentages.  The bad habits instilled by doing thousands of worksheets have also come home to roost. <sigh> Fortunately, while time to cover the gap-material will be a problem, both boys should pick up on the missing concepts pretty quickly. 

I've also discovered that on his meds, my son has about a 20 minute attention span, give or take 10 minutes.  Off his meds, ... he can't stay focused for five minutes without interrupting himself ... seriously.  Soon, I will start timing it and taking data - maybe, build some graphs and pie charts. ...

On the plus side, my son does much better when allowed (read made) to verbalize his thinking process.  It is a short step from there to model and guide HOW to write down his work.  Oy vey, Mrs. Lonce, my fourth grade math teacher, would spin to see what my kids have been allowed to get away with in showing their work.  Ms. Reilly (?) my 7th/8th grade math teacher, wouldn't bother to give them credit.

Captured my imagination ... and all of my attention

So much to cover and my brain is bouncing around something fierce.  Hmmm ...

First, the Adderall didn't work.  Not only didn't it work, I had more side effects than I was even really aware.  While, I've been logging most everything because I've been tracking my allergies, some of the side effects were there but not "worth" logging.  Here they go: 

• Common side effects: Upper Abdominal Pain (like the later stages of labor), Chronic Trouble Sleeping, Loss of Appetite, Feel Like Throwing Up, Nervous. Infrequent side effects: Feeling Restless, Hives, Rash, Trouble Breathing, Anxious, Dry Mouth, Drowsiness, Dizzy, Low Energy, Head Pain, Fast Heartbeat, Heart Throbbing or Pounding, Altered Interest in Having Sexual Intercourse. 
• Rare side effects: High Blood Pressure – not high but definitely higher, Feeling Faint, Chest Pain – not exactly, more like a tight chest, Disturbance in the Ability of the Eye to Focus – more like a delay, Feeling Unhappy or Unwell – if you felt like crap, you would too. 
• Not on the list unless I missed it: Throat tightness.

Second, I am captivated by the idea of starting my own advocacy business and translating that into a larger platform.  Can't really share more right now, but it occupies most of my waking and sleeping thoughts in one way or another.

I guess I wanted to talk about the second, but then decided not to ... for now.