Tripping Over My Words

My son’s IEP meeting was a couple of weeks ago and of all the things to zoom in on a single phrase from the Student's Strengths section is still dogging me.  For the most part our IEP meeting went very well.  I feel like we have appropriate expectations set in his goals.  There is good documentation of the accommodations and assistive technology he needs.  (We could use more specific interim objectives in place but we are getting there with that as well)  I followed my usual cookies and combat boots philosophy and only needed the cookies.  So all in all I should be ready to call it a win and move on but my mind keeps coming back to those six words. 

“Little Man blends in pretty well”

This is what Mr. X put in for my son’s strength in the present level of performance section.  He blends in pretty well.  It seems like such an innocuous phrase but in truth it is the only truly toxic thing in the whole 34 pages.  It's probably the most toxic thing he will run up against in his whole life.  Mr. X would be astonished to read that I am sure.  Maybe some of you are as well.  Mr. X, all my son’s teachers, like him.  One of Little Man’s strengths is that he is pretty darn charming and as long as you are respectful of his few quirks, a very laid back, “easy” child as well.  I can almost SEE Mr. X’s baffled expression were I to tell him how that single comment has been gnawing away at my brain and my heart for weeks.  And that is the only reason I have not said something about it.  Yet.  I just don’t know if I can find a way to say what is bothering me so that he (and the rest of the team) will see how corrosive it is versus just seeing me as a total whack job.

Those six words are the embodiment of a whole mindset that is perilously dangerous for my son.  They list as his strength the ability to “pass” for normal, to suppress what and who he is and seem, at a superficial level, like a standard issue individual.    This is corrosive to his well-being, to his soul, in so many ways that it’s almost impossible as I get deeper into this post to even write what I mean in a reasonable coherent fashion.  I can’t imagine trying to speak my way through it without coming across as a wildly emotional irrational mom, someone easily dismissed and unheeded.  But in many ways – this single issue is the foundation of my son’s well-being for all of his life.

Some folks would understand better why it upset me if the school had set “blending in” or “passing” as a specific goal.  Any one in a minority or marginalized group would instantly get what I am saying.  Setting the goal to seem “not disabled” would more clearly lay out the subtle message “being different / disabled is not ok - only being the same as everyone else is.”    One of the first things I ever read about how dangerous this is for folks like my son is still one of the best.  I wrote about it here.

But sadly even as a stated rather than implied goal would still leave a lot of people wondering what in the world I am going on and on about.  And I just can’t seem to find the words to explain.    I can't let it go either.  I just can't so I just keep chewing on it, on how to explain so people can hear.

Half a Box of Tissues and Many Swear Words Later

This was not the post I had intended next.  I thought maybe something light and cheery was in order.  You know balance the challenges and the gifts but while life usually tips far, far into the range of things to be grateful for it doesn’t always.

Have I ever mentioned the little clutch of fear I get whenever my phone rings and it is the school’s number?  Usually it is unfounded but not today.  Today it is the school guidance counselor. Little Man is being bullied at school.  I start crying again the minute I type those words so I guess I am not as sniveled out as I thought.  I have always known he would face unkindness someday.  But knowing a thing and living the thing are, well, two separate things entirely.  I am both heartbroken and ragingly angry for him.  A part of me cannot understand WHY?  He is such a sweet and loving kid.  He has differences yes but he is unfailingly kind to others.  WHY must someone hurt him, emotionally and now physically?  What purpose does that serve?  To the person or to the grand scheme of things at large?

The news is full of people who hurt those who are different.  There is this horrifying story and this, and – well I could go on – and on - and on - except really, I can’t.  I just can’t.  I can’t read any more.  I can’t face any more of it. Thank God Little Man has not faced anything that traumatic.  Yet.  And there's the worst part.  He could.  Someday he may.  Because I cannot stop it.  that's what I have to face right now in this moment.  No matter how I try I cannot always be there to protect him.  And if you know me, you know that I will have to DO something in response to this incident even though I know that reality.  The only real question for me is what to do beyond cry and curse?  Punching out a second grader is not really a viable option (and the tiny shred of rational me available in this moment knows in the long run it would not help.) 

I talk about being the change you want to see in the world, and this is one of those places where the rubber meets the road.  To lash out and cause more pain and anger and maybe shame would be easy to do but it would not move us toward what I really and passionately believe is the only answer; understanding, empathy, and celebration of what makes us each unique. 

I call the school back. I know – and really believe – that all the members of his team really truly care about Little Man and his emotional as well as physical well-being.   I know they have their procedures and that the “offending party” will be “subject to appropriate discipline.”  But could we look at something else too?  Please?  Can we look at the diversity programs they already implement and add on to them?  They focus on things we can see; skin color, family differences, mobility impairment.  Can we go deeper still?  All of us have differences – and many, many of them are invisible, like Little Man’s neurological differences.   There are children throughout the school with invisible differences.  ADD/ADHD. Diabetes.  Autism. Mental Health issues.   Some in special programs and some not.  Can we address everyone about the importance and value in ALL differences, even those you cannot see on the outside?  Does a program like that even exist?  If it does, I’ll pay for it.  If it doesn’t I’ll help create it. 

Because, Because, well that’s obvious right?  I know this is not a problem I can fix but I have to do SOMETHING!  I am trying to live up to the words of a very wise friend - who is also affected by FASD.  "The question, he says, "is always what would LOVE do?"

Must See TV (ok videos really but it sounded good!)

Check out this video - hear people affected by FASD telling their own experience:

Living with FASD

Or this one with Alan Mountford and Diane Malbin talking about children with FASD and School

You Never Know Who has an Invisible Disability

Both are awesome.

A Route of Many Roads ...

Photo is an abandoned school bus overgrown by weeds and trees

I found this image on picc.it where it was uploaded by rchan

...Leading from nowhere to nothing.  It took 3 hours for the school to deliver my son home after summer school yesterday.  I live 1.3 miles from the school.

My son did not get on the wrong bus.  He did not forget to get off at his stop.  He was on the assigned bus which traveled the planned route and got off at the correct stop.  The school district transportation department informs me that "they use less buses to cover the county during the summer session".

  1.3 miles.  3 hours.  For a special needs 2nd grader.  That's it. I have nothing else to say today.

Expectations

Image is man holding poster that says "Expectations are premeditated resentments"
image was created by me using a meme generator

That about sums up how I feel about expectations related to Little Man.  If I expect his permanently altered brain to develop on schedule or expect that a brain that is neurologically different to function exactly the same as one that is neurotypical then I am setting myself up to be disappointed, frustrated and yes, even resentful, when it does not happen.  Worse yet I am setting him up to be discouraged, frustrated and resentful as well.  I would argue that these are not emotional states associated with learning achievement.

To quote one of the smartest men ever*,  "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”   So you can imagine how I felt when I heard Arne Duncan say, "We know that when students with disabilities are held to high expectations and have access to a robust curriculum, they excel.”  Really Mr. Duncan?  How kind of you to correct me.  I assume you have years of experience caring for and teaching special needs students that inform this knowledge.  That or you have read widely and deeply into the literature and studies that show this.  I somehow have been grossly negligent in my observations of my own special needs child and sibling because I missed this entirely.  In fact, as I mentioned above, I’ve been misled somehow into drawing an almost opposite conclusion!

Therefore, I must go forth and research right now to find the error in my ways.  Imagine my surprise when I find that Arne has no classroom time in his employment history, not even with neurotypical children no less special needs.  He did not study education as an undergraduate or a graduate.  His entire connection with education seems to be on the basis of having good friends that appoint him to plum positions.  Arne also has no direct experience with special needs children personally – not through his own children or his extended family that I could find. 

Somewhat disappointed I fall back on my second thought – surely there are studies showing the truth of this.  Now here we get into some more meat!!  Yes there are studies showing that “high expectations” lead to greater success – for all children**.

What’s missing from Arne’s rhetoric however is an acknowledgement that high expectations for a special needs child with neurological differences are not the SAME expectations as those for a neurotypical child.   I understand,  I mean I really really get, how hard it is to recognize limits without limiting potential.  But it is a task anyone involved with a special needs person has to be willing to take on.  Because the mental and emotional damage done when you drive someone constantly past their limits ends up decreasing their potential in the long run.  As a mom I struggle with this every single day.  Am I accommodating or enabling?  Am I protecting Little Man’s psyche or limiting his achievements? 

I know I do not make the right call every time.  No parent of any kid anywhere manages this perfectly.  But I would hope the man charged with guiding our nations entire educational system would have a less simplistic view ***.

*The quote is from Albert Einstein.  Of course there are all sorts of arguments as to who actually was the smartest but good old Al is always mentioned up there with Tesla, Hawking, Tao etc.

**High quality studies specifically on children with neurocognitive differences are a bit on the thin side but there are some if you dig.  It’s interesting to note however that they are usually measuring “high expectations” in relation to the disability and usually in response to a specific intervention or accommodation to measure the effectiveness of that intervention – not a standardized test measuring the child.

***Not to mention some actual experience.

Once More Into the Breach My Friends

Little Man starts summer school tomorrow.  I have no idea who his teacher will be and neither does he.  I have told them and told them that transitions are hard for him and he needs to be introduced to new people before they expect him to just show up and learn.  Sigh.  So I expect tomorrow will be a tough day for him.

I am taking the morning off work yet again so I can drive him to school and do the introduction rather than put him on a bus (with a summer driver he doesn't know either and a new route that takes twice as long) in hopes that will help.  I ran into his former teacher in the local store tonight and he is teaching one of the summer school classes as well, just not Little Man's.  He promised to look in on Little Man and help out if he was having any trouble.

I know the schools cannot do everything a parent might wish for every child.  They are woefully underfunded - all the time in our county it seems.  But really, telling us the teachers name and arranging for Little Man to meet him or her once before class starts doesn't seem like it should be too hard. for them to manage.

Summer session is only 5 weeks long.  It usually takes Little Man at least 2 weeks to settle into a new routine.  I'm not very hopeful we are going to get anything out of Summer School.  I think I need to start making alternate plans for next year NOW, since it is always such a struggle to find the right setting for him. Not just for us but for all Special Needs kids.  It shouldn't be, by ADA law any public accommodation, (camps, day cares, etc are all included in that unless they are affiliated with a religious organization, by the way) but you would not believe the number of places that turn us away. Even the before and after school care program at the school refused us for several years.  He does attend there now but I flex my work hours to insure it is only 20 min before school and 20 after that he is there.  Could I push the issue with each place as we run into them?   Sure, but if they don't want him there what kind of experience do you think he is going to have if I force them to accept him?

If I had unlimited time and were made of money I'd pursue legal action against each and every one - just so people would get the point - you cannot legally discriminate against the disabled in this country.  But I'm not and so I don't but I sure wish I could.

Exercises in Futility

I really disagree with the amount of weight being put on standardized tests in schools these days in general but the new move to push that same focus into special education seems like a whole new level of crazy.  I do not believe testing as we are doing it now is helping school or teacher accountability in any way.  Nor is it improving education.  Standardized testing has become an industry in and of itself.  Like any industry it exists for one reason - to make money.  It is less about improving the education of our children than it is about selling the creation and scoring of exams and its driving teaching to be less about educating young people than about creating successful test takers.  I don’t know about you but I have not taken a single bubble test since I left school.  So how was 5 days of “test taking strategies” a productive use of time for my daughter?  That’s what her school spent on it, 5 whole days, and that does not include the 10 days of actual test taking and the lost time where she sat and watched movies because her teachers were helping to proctor other tests.  When I add it all up, about 20% of her education time this year was spent on testing. 

For my special needs son testing this past year was even worse.  Because the US Department of Education is starting to evaluate Special Ed Programs on test results the school was insistent he had to finish the exam no matter how long it took.  For my child that turned into 8 weeks’ worth of testing!!   My child needs more contact time with just about any learning subject to learn it.  Trying to keep up with the general education “pacing guide” which moves through topics way too fast as it is and subtracting 8 weeks’ worth of actual education time to accommodate testing on top of that is one sure way to guarantee my son will FAIL.  How is this meeting the objective of improving his education? 

The next step the government plans to add is a measure of graduation rates for Special Education students.  Graduation is an excellent goal.  I am certainly all for high school graduation for my child (and everyone else’s for that matter) but the measurement is going to be “ON-TIME” graduation.  So, push someone who learns more slowly than average to keep at the average pace, take out more time than average for non-educational activity (testing doesn't “teach”) and punish the school if the system you designed to fail produces failure.  Great! Wonderful! Let's do more of this!

How is anyone seeing this as a good idea?  Really?  Can someone please explain this to me?

How do we reverse this trend?  I really want to know.  There has to be a way to inject some logic into these decisions.  I’m just not seeing it.  And it’s not just beating up on my kids’ teachers or even the administrators at their schools.  I've looked at the “opt out” movement .  We may be taking that path, for my son at least.  In his case the testing is not just “doing no good” at improving education it is doing actual harm.  But is that really going to move the dial overall?  With all the talk about “response to intervention” why are we not measuring the testing intervention as well to see if it is having the desired effect?  How do we start that conversation?!?  Some schools are already reducing the role of testing.  So how do we make the sanity spread?  Does it even make sense to ask these questions when I don't have a +5 BILLION industry behind me? 

What would you do?

When I entered Little Man's school yesterday a teacher's voice stopped me in my tracks. She wasn't quite shouting but her voice was raised. Raised in unmistakable anger.  

"You look at me. Look me in the eyes, say you are sorry and mean it. I said look at my eyes when you say it."

Her voice hurt me. Let's leave the words aside for a minute, just the tone of her voice knotted my stomach. My jaw clenched and my whole body braced for a blow. I've heard that tone voice before as a child myself and all these long years later it still hits me as hard as any physical slap. She was not talking to my Little Man and years of being judged and second guessed as the mom of a special needs child makes me reluctant to step into any adult child interaction I don't know the background and context of but here it is hours later and I can't get that interaction out of my head. 

Perhaps it is because as much as I hate to admit it, I've heard that same tone come from my own mouth. It leaves me floundering in an ocean of shame when it happens and thankfully it is rare. But it should be never because that tone never taught me anything true or of value. It has no place in a child's life. It's the voice of hate. I do not mean to say that teacher, or I, hate any child. That voice comes out in me when I am so beyond tired, or frustrated, or afraid, that I hate the situation I am in, the way that I feel, sometimes even myself in that moment. 

But a child doesn't know that. They only know what they hear and feel. That voice takes up residence in their heart and mind just waiting for its chance to leak out through their self-control and contaminate the next generation. I don't know how you purge that poison. I do know slowing down, taking my time, being more intentional and less reactive with my kids is what helps me keep it under control. But there are still those moments when stress has ground my nerves as raw as hamburger and I feel it bubbling up my throat. I've gotten better about giving myself a time out before it erupts but I think that will always be a struggle.  I assume for the teacher I heard, she had reached that same place where her control and restraint simply wore too thin. Right now I'm wondering, was there some way I could have helped in that moment at school. Was there a way to helpfully intervene or was letting it pass really the only way to not make a bad moment worse. 

If the emotion had not already been so high, I would have said something about her words at least. Not every child CAN " look you in the eye." And under emotional stress, a flat affect or even a smirking mask may be the best any child can produce. I don't know if the little boy involved in this incident has any neuro cognitive or developmental issues. He may very well not but I do know that exact scenario plays out for children who do have those issues all the time. 

I think that is why it's still troubling me. It had nothing to do with Little Man today, but some day it will. Did I wimp out on an opportunity to educate? Can someone that worked up be reached in the heat of the moment? What should I have done? Is there something I should do now after the fact? I still don't know. 

What would you do? 

World Enough & Time

I had something I intended to post but then I saw a mother write this:

“As a parent, an IEP is a sobering read.” 

And then this:

“It's tough when you've seen your beautiful kid grow and see so much positive but reading the IEP reminds you that they are flawed. “

And so now I am writing this instead.

Dear friend - remember that the IEP is part of a system that says you must do x by the time you are 18 to be “successful.”  Hopefully all the people in that IEP meeting with you today really care about your boy.  I believe all except a very few do care, passionately sometimes, about our children.  (No one goes into teaching for the money!) It’s not their fault that the system they work within defines success so narrowly.

You do not have to put him in that box though.  You don't have to SEE him from inside that box.  Your son is not “flawed.”   He is not blemished, damaged, defective, or unsound.   (And neither is mine.)

I don’t know why we are all so fast to judge one another as if we were finished products instead of seeing each other as works in progress, but we do.  He is only 13.  There is so much more living, growing, and changing ahead of him.

Keep looking at the beautiful, and the growth, and the possibilities. School may be done with him at 18 but you will still have plenty of room and time for him.  All of us parenting children that are outside the box will keep working on the world so it has room and time for him too.  

Fuming again

We’ve hit a bit of a snag in the charity concert we are organizing for FAFASD (Families Affected by Fetal Alcohol Spectrum Disorders) and I am royally pissed off about it.  FAFASD is the brilliant brain child of a virtual friend Adrienne.  She envisions a group that would provide training and support to families helping them help their FASD affected child (or adult) succeed.  It’s long been known that the number one success factor for people with FASD is a family, caregiver, or support system that is knowledgeable about the condition and their needs.  Great cause, right?  Who could object?

Back to my snag.  We’ve had some trouble with the school district about using the high school performing arts center as a venue.  As far as snags go it’s not catastrophic.  We will still do the event, we may be delayed and certainly are inconvenienced but it’s not like losing the main act or something.  So it’s not the fact that we have a snag that pisses me off.  I mean who could organize a large event and not expect a few of them.   (Granted I am kind of a control freak and fairly anal about making and sticking to a plan but even I know this kind of thing comes up.  That’s why you have contingency plans.  So you can just regroup, adjust to plan B and move on.  Which is what we will do.)

What pisses me off is WHY we are having trouble with using the school’s venue.  I know, I know, me having an issue with my local school district, hard to believe isn’t it?  We had a date, agreed to by the school, and had confirmed with our performers and then out of nowhere we were told that we could not have the performing arts center without paying a ridiculous fee.  Ridiculous enough that it might make the whole event unable to bring in any proceeds for the charity and one we know is not charged to others who have done the same sort of event.  (I know this without doubt because I was part of organizing those events too – it’s where I got the idea from.)  When asked why the sudden change we were told – and oh this REALLY frosts my cookies- “Well your son is not the only child in this area with problems, there are lots of others with needs.”    What the hell!?!

First of all, MY SON won’t benefit from this in any particular way.  The idea is to raise funds to train parents who don’t know how to cope with FASD.  I’ve done a mighty fine job seeking that info out for myself already, thank you very much.  At some point if we are able to organize a camp for kids with FASD I expect my son will attend at the same cost as any other child and might get some peripheral benefit that way, but for the moment all he is getting out of it is a somewhat distracted and busy mom.

More importantly, no kidding there are other kids than mine with needs, DUH that is what this is all about.  I know I’ve gone over statistics before but forgive me for going there again.  By the most conservative CDC estimates there are 40,000 children with FASD born A YEAR.  So let’s define children as anyone under 18.  That says there are almost three quarters of a million children with FASD in our country.   And if you want to look at adults suffering (and FASD is not curable – it NEVER goes away).  There’s another 2 million people.  There are more children right here in this school district  with FASD whether they want to acknowledge it or not.  FASD affects more people than, Downs Syndrome, Spina Bifida and Autism COMBINED.  I didn’t see the school having any issues with the program for national Autism week. 

I firmly believe this is discrimination.  I don’t know that it is intentional but I do know people don’t want to talk about FASD.  They don’t want to think about it and they certainly don’t want to address it.  No one wants to think about how their wife, sister, daughter may have done permanent brain damage to their child, grandchild, niece or nephew.    That doesn’t happen to nice normal middle class people.  Only degenerates, alcoholics, and druggies hurt their children that way.  Guess what people, one drink could be too much for some women.  How much is too much depends on too many other factors to ever give a safe threshold.  If your tolerance is low, if you have a cold or infection temporarily impacting your liver’s ability to filter the alcohol, if you are genetically predisposed to alcohol sensitivity, if you have not eaten well on the day you drink, ALL can impact how much of the alcohol passes through to your child.

And let’s be clear on this one too - there is NO safe time frame either.  Long before most women even know they are pregnant critical parts of a baby’s brain have started to form.  What if a theoretical nice normal middle class woman, who has no idea she is pregnant, goes out to a bachelorette party for her best friend.   Would anyone blame her for having a margarita (or even three too many)?  As long as she didn’t drive herself home no one would even blink.  Or the women told by well-meaning but misinformed friends, relatives and even doctors that a few drinks here or there won’t cause any harm.  When their children are born looking and behaving perfect in every way months later would anyone even stop to wonder about if they drank, how much, or when?  No.  Not with that healthy happy baby right there.  Unfortunately, the more subtle forms of damage from FASD won’t be seen in those children until they are elementary or even middle school age.  Then, when they have troublesome “behaviors” no one will think, “Hey this may be a symptom of brain damage caused by fetal alcohol exposure.”  Oh no.  They will think “Oh my, that child has ADHD” and put them on medication designed for that specific issue.  Sorry, FASD cannot be solved with Ritalin.  Or they will say – “That child has bad parents.  Nothing wrong with them that some discipline won’t cure.”  Except discipline can’t make a blind child see, or a deaf child hear, and it can’t heal brain damage.  

My son is going to be fine.  He has, I guess you could say, mid-range impairment on the spectrum.  It is enough to notice, enough to get attention and help, AND he has parents knowledgeable about his disability.  Children at the mid to low functioning range of the Fetal Alcohol Spectrum actually tend to do better than children on the higher end in the long run.   It’s the children of our theoretical nice middle class women, who did nothing intentionally wrong, that will never get a diagnosis or the help they need.  Their parents will be clueless as to why everything they try just doesn’t work, especially if it works with their other children.  Those children will grow up in a word that is too fast, too loud, and too damn ignorant to ever get them the help they need.  Looking at the statistics, they will end up frustrated and depressed.  43% will not finish school.  About 50% of them will think about or try to commit suicide.  70% will be institutionalized in their life for alcohol and drug problems, mental health reasons, or crimes committed due to their impulsivity and vulnerability.  80% will not be able keep a job unless they are provided with appropriate supports, increasing their risk for homelessness, depression, substance abuse, etc. It becomes a vicious circle and it doesn’t have to be that way.  With support most people with FASD can learn and they can be gainfully employed.  Except, who’s going to identify what they need?  Who’s going to help them get it? 

And that is what pisses me off most about this snag, those children (who are not my son) with special needs that are not and will not be helped because no one wants to talk about FASD.

Satisfaction

From reading just this blog you may have the impression that I like conflict.  I sure write about plenty of it with Little Man's school.  The truth is I really hate it.  I get a stomach ache even thinking about confrontations.  I just won’t let that make me back down.  I’ll white knuckle my way through it when I think it’s important.   Getting mad helps me sometimes (and sometimes hurts) but even when my temper cools, I slog through it with a kind of grim determination. 

Tonight was our PTO board meeting at Little Man's school and grim determination is how I’d describe myself headed into that. I spent at least half the day dreading it since I knew that the letters I sent had been delivered yesterday and I would have to sit across the table from the principal  who flat out lied to me and who I had publically called out on it.  I was a little curious how he would handle it but mostly I was determined to stare him down - stomach cramps and nausea be damned.  If I let him walk on me now this school system will walk on me and worse fail Little Man for the next 12 years. 

He did not raise the issue during the meeting.  This is good because I’d have handed him his head for discussing things related to my son specifically with people who have no business being involved.  After the meeting though he asked to speak with me a moment.  To my surprise I received personal apology AND the written one I had requested.  To my further amazement he admitted in both that he was “less than forthright”.  I didn’t expect he would ever say he lied.  (OK, technically he didn’t but there aren’t too many ways to interpret “less than forthright”).  I expected he would tell me that he had sent the memo but some secretary forgot to get it the teachers’ boxes and I misunderstood him.  Or some other shift the blame strategy.   It definitely was not what I expected.  So – is it enough?

Well, it doesn’t get someone on the staff trained but honestly I think that is more important at the middle school and high school levels than it is now.   My request that there be such a person and the fact that I offered to pay for the training which they declined is officially on record.  Those I think are important points for the future.  I also feel like I made an important point, not just to the principle but to the school board and special ed department, overall.  I won’t be walked on, brushed off,  or ignored.  I will call them on bullsh** when that is what they are shoveling.   

I know I’ve mentioned my tendency toward the cynical before so you know I’ve had my thoughts about how sincere his apology was and how much was a show.   However, even if it was for show, we’ve both learned from the fact that he felt compelled to put one on that I can make him “perform”.   I accepted his apology.   We’ll see how it goes from here.

Second Warning Shot

So - here is the general text of the letter I am sending to the principal of Little Man's school.  I'm copying the Director of Special Education in the district and the Superintendent of the School Board.  Let me know if you have any thoughts - it probably won't get mailed until Monday evening.

Dear Mr. Principal,

As you are aware my husband and I offered to pay for attendance by one staff member from your school to a seminar regarding FASD and learning.  The offer was made the week before school began.  After about a week you informed me verbally that no one from the staff was interested in attending, indicating that they were too busy with other activities.  In our tri annual review meeting with the staff that work most closely with our son, my husband asked why no one had been interested in the opportunity.  All members present at the time were surprised to hear that we had made the offer.  Not one was even aware that the opportunity had been presented to the school.  We voiced rather extreme surprise at this and several staff members offered to go back and review their e-mail and other memos to be sure information about our offer had not been sent and overlooked.  At the IEP review meeting all members confirmed that they had checked and found no record of our offer being communicated to them.

We are very distressed and frankly confused.  We are well aware, as is all of the county, about how tight the school budgets are and cannot understand why an offer for continued teacher development would be ignored when it is offered free of charge to the school.  The seminar we proposed to pay for was offered outside of school hours so it would pose no interference with the staffs normal duties.  I provided you with ample information regarding the presenter, Diane Malbin, and even a cursory google check of her name would have confirmed that she is a nationally recognized expert in her field.    (see http://www.nofas.org/fasd-hall-of-fame/diane-malbin/)

Children affected by alcohol in utero are NOT a rare occasion. Each year in the United States, by the most conservative estimates,  40,000 babies are born with FASD.  (Centers for Disease Control and Prevention, 2010).  Recent in-school studies suggest that cases of FASD among live births in the U.S., previously reported as approximately 9 per 1,000 (Sampson et al., 1997) could, in reality, be closer to 50 per 1,000 (May, 2009). In addition, recent retrospective analyses of hospital admissions data indicate that under-reporting of alcohol misuse or harm by women may further disguise true prevalence rates (Morleo et al., 2011). 

We know that the people working with our son are devoted to the education of children, that they do the work they do because they care.  We believe that had they known about the opportunity we were offering there would have been at least one willing to attend the training offered.  We would like an explanation, please, for why the offer we made was not relayed to the staff.  I personally would also like an explanation for why I was told the offer had been relayed and was declined when clearly that was not the case.  We would appreciate the courtesy of a written response on these two questions.

Sincerely,
Little Man's Parents

Baby Steps

The meeting yesterday went pretty well.  Long - about 2.5 hours but in the end I got most of what I wanted in the official IEP and the entire document is in the official notes.  I have heard from some others that they have been in IEP meetings that have gone 4 hours or longer over several days.  I'm grateful it did not have to go that long.  I was pleased that after the initial stunned stares at my "manifesto" the team actually read through it and made suggestions I had not even thought of. 

The one issue that has not been answered is why the training we offered to pay for was never offered to the actual teachers and why we were told it had been and they were not interested.  I'm not letting that go.  I'm working on a letter to ask those questions.  I intend to send it registered mail to the Principal, the director of special education for the district and the school board.  I will be asking for a written response.  Both of which will be going in my record book.

I'll post a copy of that once it goes out. 

Right now I'm putting the communication journal they have agreed to use together to go into Little Man's school bag.  I am most pleased about that I think.  It was such a huge help in his preschool days that I really wanted that going on. 

After that I'm trying to do a little self care.  I am dog sick and going to bed early!

Change that to Fire Breathing Dragon

The school sent home a proposed IEP in Little Man's back pack last night before the meeting today. 

I am SO MAD!  First of all I thought I was entitled to that two days in advance. Second - they have stripped down my son's supports to two days a week half hour group speech therapy and half hour a day resource teacher in the room. His only iep goals are that he will follow class room directions independently with only two prompts and increase his use of pragmatic language by the end of the year. 

No interm goals listed and no evaluation method listed.  No accomodations listed.

It made me mad enough to rewrite the entire damn thing.  My version is below - should be a hell of a meeting.

Present levels of Academic and Functional Performance

Student Strengths

Little Man loves to please people.  He enjoys helping others and particularly likes when he can be the “knowledgeable” party in an exchange.   He thrives with one on one attention.  He is very good at rote memorization and can often appear to know more than he comprehends by virtue of having memorized specific information in specific contexts.

Extensive use of social stories over the summer has allowed Little Man to interact more with peers in situations that specifically apply the language and skills practiced by rote. 

Little Man is highly imaginative in his play – however this trait is emphasized to the degree that he is often lost in his own world.

Little Man loves music and finds music and rhythm a strong aid to memory.

Students Area of Need

Little Man has issues with slow auditory processing and short term memory deficits.  This impacts his ability to work independently.   He needs slower than average delivery of auditory input, visual demonstration of directions as well as auditory input, and requires reminders (visual or auditory) to remember the next stages of a task.  Repetition and routine help with this issue.

Little Man required private speech and language therapy outside of the school both during the school year and over the summer in order to make improvements in his articulation abilities over the past year.  However he continues to present with errors which combined with his low speaking volume, lack of eye contact and inability to read social cues for when to speak impede his ability to communicate functionally.  Little Man does not use grammatically correct sentences and may have difficulty grasping the past and present as concepts which may hinder his use of the grammatical forms.  He is unable to use language to describe events in his day, stories he has heard, answer WH questions or to interact with his peers socially.

Little Man has been evaluated by both the XX Children’s center and Dr. BLAH BLAH and is estimated at about 3.5 years of age developmentally.  This dysmaturity along with sensory issues can create issues with self-regulation for Little Man.

Effects of Disability on School

Little Man is meeting grade level expectations after a full years prior exposure to the curriculum and extensive outside interventions but requires special education services to help him learn coping techniques for his sensory and neurodevelopmental deficits. 

Little Man’s continued speech difficulties, dysmaturity, and difficulty understanding social cues negatively impact his ability to interact with peers and adults throughout the school day and to access the general education curriculum without accommodation and supports.

Academic Performance

Little Man can recognize all 26 letters and their sounds in the specific school context.  He has trouble accessing that information in new or novel settings even after a year’s exposure to the information.  (For example – inability to name any letters on the eye chart at the physician’s office with corrective lenses on, inability to identify letter sounds in church school games, difficulty recognizing 3D representation of letters at gym)

Little Man has memorized a great deal of beginning reading material from his first year in Kindergarten and “reads” it fluently due to repetition at home and in school.  When presented with the same words in a completely new context he often struggles with them. 

Little Man’s grasp of numbers is spotty.  He can count up to 100 with assistance and a focusing task (racing cars along a table).  Without a focusing task that captures his interest, he varies from 40 to 60 in independent counting.  He performs much more strongly with any numeric task when physical concrete objects are involved. 

He has not been able to grasp the idea of pennies, nickels, dimes, quarters and their values for him one unit remains one unit even after extensive practice. 

Functional Performance

Little Man is currently not ready for toilet training for bowel movements.  He has poor muscle ability and low sensation reception.  He requires the use of pull ups during the day and may need to be changed if a bowel movement occurs.   His current goal in this area is to accurately identify the sensation of needing to go and notify an adult.  He should not be pressured to use the toilet if he does so. 

Little Man has improved his core muscle strength somewhat but still presents with low tone and still exhibits poor fine muscle control impacting his ability to write and draw.  He has difficulty accurately forming figures particularly those with diagonal components and also has difficulty exerting enough pressure for his writing to be visable.

IEP Annual Goals

Social Skill Area Goals

1. Little Man will increase social-emotional skills as measured by the benchmarks listed

below.

a. Little Man will identify various emotional states in others 4/5 opportunities to do so.

b. Little Man will state why a person might be feeling a particular emotion 4/5 opportunities to do so.

c. Little Man will identify various simple emotional states in self 4/5 opportunities to do so.

d. Little Man will state why he/she might be feeling a particular emotion 4/5 opportunities to do so.

e. Little Man will state what would be an appropriate response to a particular emotional state 4/5 opportunities to do so.

Speech and Language Goals

1. Little Man will increase social communication skills as measured by the benchmarks listed

below.

a. Little Man will initiate appropriate communicative interactions with others 4/5 opportunities to do so including establishment of eye contact and use of appropriate vocal volume.

b. Little Man will initiate varied appropriate topics with others 4/5 opportunities to do so.

c. Little Man will initiate communicative interactions with others by asking questions 4/5

opportunities to do so.

d. Little Man will engage in conversational turn-taking with others across 3-4 conversational turns, 4/5 opportunities to do so (topics initiated by self /others).

e. Little Man will call attention to communicative partner prior to communicating 4/5 opportunities to do so.

f. Little Man will ask questions of others regarding topics initiated by self or others to sustain

conversation for conversational turn-taking 4/5 opportunities to do so.

g. Little Man will identify and understand various non-verbal social communication behaviors (ie. Tone of voice, personal space, vocal volume, body orientation, facial expressions) by stating their implied meaning 4/5 opportunities to do so.

h. Little Man will spontaneously seek assistance/ ask for help/ seek additional information given visual prompts 4/5 opportunities to do so.

i. Little Man will spontaneously use a verbal or non-verbal message to indicate to the speaker that he needs additional “wait” time to process information editorially 4/5 opportunities to do so.

j. Little Man will identify breakdowns in communication and make appropriate adjustments 4/5

opportunities to do so.

2. Little Man will increase narrative discourse skills to objective criteria as measured by the

benchmarks listed below.

a. Little Man will state the main idea of the story, video or situation 4/5 opportunities to do so.

b. Little Man will relate information (ie. Past events, stories, situations, etc…) sequentially 4/5

opportunities to do so.

c. Little Man will identify what happened first, in the middle, and last regarding a previous read

story, past event, or situation.

Academic Behavior

1. Little Man will increase their ability to function appropriately within the school environment as measured by the benchmarks listed below.

a. Given both visual and verbal prompts, Little Man will participate in tasks/ activities to completion by exhibiting appropriate behaviors, 85% of the time.

b. Little Man will transition appropriately from tasks and activities and school environments 90% of the time given advance visual and verbal prompts.

c. Little Man will accept changes in routine/schedule by exhibiting appropriate behaviors given

visual and verbal cues 75 % of the time.

d. Little Man will follow classroom rules and directives given visual and verbal prompts 90% of the time.

e. Little Man will independently ask to “take a break” when experiencing self regulation issues given visual and verbal prompts 70% of the time.

Academic Skill Area Goals

1.       Little Man will answer who, what, where, why and when questions to 70% accuracy for both written materials or description of activites going on around him.

2.       Little Man will increase his/her functional math skills in the areas of time and money by demonstrating understanding of future and past independently with 80% accuracy and demonstrating understanding of pennies, nickels, dimes and quarters.

Accomodations

1.       Communication with Little Man by teachers will include:

Concrete and Specific Language
Avoid using vague terms like later, maybe, "why did you do that?”
Slower pace
If necessary for understanding, break tasks down into smaller steps
Use of gestures, modeling, and demonstrations with verbalization
Specifically engage attention visually, verbally, or physically

 

2.       Social Supports for Little Man will include:

Protect the child from bullying and teasing particularly around toileting
Create cooperative learning situations where Little Man can share his/her proficiencies
Practice on specific skills through natural activities with one peer
Practice on specific skills through natural activities with a few peers
Structured activities with set interaction patterns and roles
Focus on social process rather than end product
Specific teaching, rehearsal, practicing, and modeling in natural settings of the following skills:

turn-taking

complimenting

negotiating

responding

inviting

waiting
greeting

joining others

accepting answers of others
accepting success of others

taking the lead

following ideas of others
appropriate joking and teasing
 

3.       Environment and Routine

Provide a predictable environment
Minimize transitions
Offer consistent daily routine
Avoid surprises, prepare Little Man thoroughly and in advance for special activities, altered schedules, or other changes, regardless of how minimal
Talk Little Man through stressful situations or remove him/her from the stressful situation
Provide personal space in resource or other room for recovery from overstimulation
Reduce distractions and sensory overloads due to noise, vision
 

4.       Presentation of Material

Presented visually, kinesthetically, as well as auditory
Use established routines
Divide instruction into small, sequential steps provide visual reminders
Provide repeated opportunities to practice
Provide needed prompts and cues
 

5.      Self Management/Behavior
Provide reinforcement that is individualized, immediate, and concrete
Incorporate strengths and interests into daily plan
Avoid punitive measures that lower self esteem, increase anxiety, and are not understood like taking away set routines, free time, or exercise
Avoid disciplinary actions for behaviors that are part of his disability, i.e.:

avoidance of eye contact
talking to self
slow response time
repeating words or sounds
upset in crowds or with noise
anxious
perseverating on topic of interest
upset by change

6.       Communication with Parents

The school will use a communication journal provided by Little Man's parents to provide the following info at minimum 2x a week:

Date

Who is writing
The topics covered for the week
Children Little Man played / interacted with
Names of books read, copies of poems, sayings that he should be memorizing

Description of any behavioral issues including: trigger, behavior, consequence

A copy of Little Man's intervention schedule – days / times he has Speech, Resource, in class support  - will be provided to his parents

The school will allow Little Man's parents to attend at a minimum 2 of Little Man's interventions during the school year so that they may observe methods and incorporate them at home.  This should be scheduled at the mutual convenience of the parents and the school.

3.       Knowledgeable mentor / resource for Little Man

The school will provide at minimum one person with training in alcohol related neurodevelopmental disorders to work with Little Man.  Training for that resource will be provided at the schools expense since training offered by the parents at their expense was declined.

 

Yet Another F

We had Little Man's Triennial Review yesterday.   I took an advocate and my husband with me and since Little Man's occupational therapist, physical therapist, and the principal did not show we were only out numberd 5 to 3 instead of the usual 8 to 1 match up. 

They spent the first 15 minutes or so detailing how marvelously well Little Man has done in the first week and a half of school.  I replied with all of the hours of private academic and speech therapy we had provided him over the summer to support his ability to do well this year.  His general ed teacher did let slip that this miraculous performance of his has been during their "settling in" period and they have not begun any academic work yet.  Oh how I wish I had brought the voice recorder.  I am sure that comment will be left out of the written notes.  They also mentioned how much more mature he seems this year – not crying all the time.  Really?  I thought you told me last year he was doing fine during the day – no crying or upset like I reported at home?  Yeah that recorder is going to be a staple at all meetings from now on.

They informed us Little Man had aged out of the "developmentally delayed" category and had to be reclassified if he were to continue to receive services.  I countered with the fact that developmentally delayed covers children until they are seven and Little Man has just turned six yesterday.  At which point they had to admit that he "could" remain classed as is, but threatened dire circumstances if his reviews were not able to be completed on time next year.  I allowed that - if - they wanted to do the testing now and recategorize now - so long as that did not eliminate him from any services we would be willing but we needed to see what testing would be done and what results came back before we would allow recategorization.

So they told me they would be doing an IQ test.  That's it.  Well, being the anal over prepared person I am I just happened to have a two page handout based on Teresa Kellerman's work showing which evaluations are best suited to uncovering the particular domains effected for a child with FASD to give them.  I recommended they consider something like that because if they did not I'd be asking for an independent evaluation .  (Which is my right and which they have to pay for and which I will get done regardless.)

They then handed me the signature page for the notes from the meeting and for the consent to test.  That’s it – just the signature page.  As if!  I insisted on reading the entire document first.  And that the fact that they had declined to attend the training we offered to pay for be added to the notes.  Oh my, the hullaballoo that caused!!  “What training – they had not heard of any training. Who knew about this – why wasn’t I told, blah, blah, blah. “  That’s when I lost it. 

So the principle didn’t even offer it to the teachers involved?  Or they were throwing him under the bus because he wasn’t there and I insisted on documentation?  You know what I don’t even care what the real answer is.  I was just pissed beyond belief.   Which made me cry.  Which made me even more mad to be crying in front of them.

And I get to do this again next week.  Because we have to do his IEP review.  Although why we are doing that before we determine if he is “still eligible for services”  is something they could not explain.