Monday, June 30, 2014


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.

Sunday, June 29, 2014

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.

Tuesday, June 24, 2014

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? 

Saturday, June 21, 2014

Skirting the Edge of Self Pity

I’ve been having a bad few days*.  It’s tempting, oh so tempting to just give into to them – to just wallow and say it’s not fair.  It shouldn’t be so hard.  No one understands.  No one cares.  It’s even tempting to say I don’t understand why I feel so bad and I don’t know what to do about it.   It’s not any one thing.  It’s everything.  My life is so hard.  There’s nothing to be done.  Waa, waa, waa and down into the pity party I’d fall.  But that is not true.  I do know why.  I’m tired.  Not just a little tired but bone dead haven’t slept well in over a month tired.  If there was a color coding method for tired the way they do the terrorist threat alerts I’d be at red.* 

I even know the reasons why I am so tired.  It would be easy to say it’s because of Little Man but that would not be the full truth.  The real reasons are: One, I have not been taking proper care of my body.  I have skipped workouts, not been eating well consistently, and I have skipped my medication.  Two, I haven’t been keeping my environment healthy.  I’ve let the house, my office, and even my finances get out of control.  Disorder in any one of those always throws me out of whack.  Three, I’ve been neglecting my spirit.   I have not been taking time to reflect and journal and pray.  As much as I preach structure and schedule to everyone in my son’s life for him, I need to preach it to myself – for myself.  I need to keep those things happening on a regular basis.  A tired weepy mommy (or a cranky snappish mommy) is not good for any of us any more than an overtired disrgulated Little Man is.  For both of us these unpleasant moods tend to spiral. 

If Little Man gets overtired and disregulated not only does he have trouble with his speech, his coordination, and with his behavior, he fights sleep ever harder and harder.  And so each day gets a little worse than the one before.  When I let myself get over tired and slip into sad (or mad) then I let the things that normally keep me on track go even more.  Who has the energy to work out, or clean, or write?  But at some point my slide starts to affect him.  And if I miss those warning signs then we can spiral down at warp speed.  My being off kilter throws him off and then we just escalate each other down and around and down. 

Last night was a warning sign.**  Actually there have surely been some I’ve already missed because last night we had already hit the point where he and I start escalating each other.  Little man has not been sleeping well again for a while. ***   This in and of itself is not unusual.  Sleep problems and FASD go hand in hand it seems.  In fact, some of the writing I’ve been neglecting is ruminations on a couple of articles about sleep I ran across recently.  But I’m not ready to dive into them just yet.****  His sleep disruptions invariably become my sleep disruptions.  I know when he is having trouble that it is doubly important to keep myself on track so I can help him find it again but this time I failed at that.  Well perhaps not failed, stumbled.  I love the Albert Einstein quote “You have not failed until you quit trying.”  I have not quit.  But I was using ineffective methods. 

I started with just trying to put him back in his own bed over and over each night, exhausting myself and then letting things like getting up early to work out give in response.  Then when both lack of sleep and lack of exercise were wearing me down to the point I could not wake up each time he did I started pulling him into bed with my husband and I.  I’m not against the “family bed” idea in and of itself but OUR family bed is way too small for our family to get any restful sleep.  Further worn down I started trying to steal naps during my quiet time and writing time and skipping housework I usually do after Little Man goes down.  The naps didn’t help because I was always tossing and fretful about what I was supposed to be doing or the increasing disaster zone of my house and thus accomplishing neither rest or selfcare.

Only when I was ridiculously far down my own rabbit hole did I think to ask Little Man why he could not sleep.  When he said it was because his bed was too cold I went out and invested in new fleece sheets, a fuzzy blanket and heated mattress pad.   These are not bad strategies, not the asking  him directly or the material environment modifications.  But I went badly wrong by waiting until I was exhausted before trying something different.  Last night was the debut of the new bed AND … of course it did not fix the problem, last night. *****

No surprise that today I was even more a mess – but peeling myself away from the situation for long enough to sit and write – I can see it more clearly.  This is not a problem of one night’s making and unlikely to be fixed in one night.  Sensory issues may have started him off but he’s in a pattern now.  Little Man can perseverate on a pattern like no one’s business.   It’s my job to make sure the ones he settles in are healthy and productive.  I dropped the ball a good while back when I stopped taking care of me.  Last night I was stressed out, exhausted, did not follow our routine for bed and was way too invested in a magic bullet solution to our sleep problem.  I was overtired all day and let him do activities that wind him up rather than insist on the soothing ones before bed.   So of course we did not have a good night’s sleep.  The best environment in the world was not going to overcome his being overtired, overstimulated, and stressed out by a cranky worn out mom.

Which brings us to today where I ramble on as I try to unravel the threads of this knot.  I needed some time for me.  Nana is taking Little Man on an adventure he will enjoy.******   I wanted to sit and stew and fret and yes waa, waa, waa with the time she is giving me.  But I am the one that neglected the maintenance that made last night’s train wreck possible.  So it’s my job to get us back on the tracks.   I could have tried to force myself to dive into a work out, or a nap, or chores but I know that I needed this first.  To sit, sip coffee and write, to see the big picture and make a plan.  I have a bad, bad tendency to let myself go, to try and do more, be more for everyone else.   It’s my own little perseverative pattern.  I have to go back and tell myself again and again – it doesn’t work like that.  You have to take care of yourself if you are going to be able to take care of them.     I also have to see clearly that I can’t fix what has crept up on both of us over several weeks’ time in one night.  I need to do a little today and then a little more tomorrow, first just to slow the downward momentum but then finally to turn that spiral down into an upward spin.

I’m ready I think.  I’m going to close down the lap top.  Get a coffee refill to go and head home to make dinner.  And cupcakes.  Little man will enjoy that.  And it should keep us quietly occupied until time to start bed time routines.  I will do the dishes after he falls asleep and then I will go to bed.  We won’t sleep through the night.  I’m not even going to think about that.  I’m looking for peaceful, snuggly, reassuring awakenings and one step in the right direction.  In the morning I will stretch.  I’ll do just one of my work out exercises and take one more step.

*Or defcon 5 or whatever it is.
** More like an air horn shot directly in the ear.
***It’s a bad sign that I cannot pinpoint exactly how long right?  Yeah I suck.
****Although unsurprisingly, just sitting down here and writing is helping my mood and I feel more interest in diving into that than I have since I first found them.
*****I did not handle last night well – let’s leave it at that shall we?
******Bless you Nana!!Thankyouthankyouthankyouthankyou!

Sunday, June 8, 2014

You Took Your Special Needs Kids Where? Part one

So for spring break this year my husband and I took our special needs kids to Peru.  Yes you read that right.  We took a 13 year old with ADHD and Anxiety problems and a 7 year old with FASD to a third world country for 10 days.  Are we crazy? (Um we’re parents – isn't that kind of a given?)  Actually we put a lot of time, planning, and preparation into making this trip as special needs friendly a trip as we could. 

We chose Peru because we happen to have friends that live there.  And they own a hotel.  My kids both know these people and are comfortable with them.  They know my kids and their quirks.  So although they will be dealing with a lot of unfamiliar things  - they will have some familiar too.  Our friends sent us photos of the hotel and our room in advance for us to use to prepare both kids.

Also we brought along plenty of back up.   Nana, two of their Aunts and an Uncle traveled with us and their other Nana, another Uncle and a family friend met us there.  (No we didn't pay for all of this – we are crazy not rich!!  It was along the lines of a family vacation with everyone who could make it.)  So we had lots of extra eyes, arms, and legs on hand.  I mean the adults outnumbered the  kids 9 to 2 so I figured if you throw in our friends in Peru as well  we should at least be able keep up with them.

Was it a very ambitious undertaking?  Sure, but like I've said before we want our kids to live full lives.  They are smart, interesting and active kids.  So, we went.  And with all the prep work and built in accommodations what could go wrong? 

Here’s a little overview of just the highlights. (of the trip - not just what could go wrong.  Although of course a few things had to right?)

3/22/14 D (for departure day) minus 6.   I begin packing.  Really doesn’t everyone start packing almost a week before they depart and keep a spreadsheet of items to pack and which goes in which bag and in what order?  Seriously, the key to surviving travel with my kids is having the right clothes, meds, comfort items, snacks and distractions on hand and easily accessible when needed. 

3/27/14 D Minus 1 -  If it’s not packed it’s not going.  
I’m in Little Man’s room checking over his carry on one last time when it occurs to me I have not seen the hamster stir in the cage in , hmm, how long HAS it been?  Oh crap, dead hamster!  Um, honey can you call your dad and ask him to come over after we leave and get rid of the dead hamster?  And maybe pick up a new one that looks kinda like this one please?  What?!? No I’m not telling the kids.  Do you really want to spend the next 18 hours traveling with the kids obsessing over the dead hamster? Husband makes the call.

We tell the kids the Hamster is just asleep.
3/28/14  D Day – we get everything loaded and on our way with no mishap – it’s an omen!

8 AM in the car on the way to the airport I realize sitting next to my children when they are over excited is like being in a cage with two Rhesus monkeys on crack. 

10:00 AM Arrival at airport and check in.  Flight delayed.  Feeling confident we can deal with this.

12:00 Flight still delayed.  Kids actually holding up well.  Initial over excitement past – cranky not here yet. We can cope.  Time to break into packed distractors. 

2:42 PM   Rebooking new flights since original cancelled.  Kids are getting crabby. Distractors not so distracting any more.  Taking lots of walks around the terminal.  

6:53 PM Finally boarding a plane.  Why did we think this was a good idea again?

10:49 PM  The airline personnel at JFK thought they were not going to issue us tickets for the connecting flight.  Ha – aimed the over tired children at them and we sailed through to the gate tickets in hand.

3/29/14 12:01 AM  Flight delayed again. Children rioting through empty airport doing drugged rhesus monkey impersonation again.

2:00 AM Its time to board.  Of course it is, because this happened like 2 seconds ago!
Image is a photo of my kids sleeping on the airport floor.

6:32 PM – We are here.  The rest of the travel was a blur – I can’t remember any of it.  No really.  The brain protects itself from traumatic events like that.  The hotel is lovely.  The weather is wonderful.  The kids are sleeping.  My enthusiasm for this vacation is returning.  The PISCO may be somewhat responsible for that..

image is the lovely courtyard garden at Casa de Avila

Thursday, June 5, 2014

Seeing Through Different Eyes

A guest post from an adult with FASD, Leighann Ford.  I saw the piece below she had written and it moved me so that I had to get her permission to share it.  I am so grateful to the affected adults I have met.  They are incredibly generous sharing their thoughts and experiences.  They make me a better mom and advocate for my Little Man.


I think the saying that should be emphasized with FASD is one we''re all familiar with; "don't judge a book by its cover."
Sure, I look capable now... 

And for a short while I may be... 
But I cannot guarantee that long term I'm gonna be the woman for the job.

Don't judge me based off of the articulated roll of my tongue or the calibrated written word I put forth.

I will likely fall short of this as time drags forth.

And the thing I don't think people realize is how hard my self esteem is battered when I don't meet the milestones or the standard set forth by peers, teachers, parents, colleagues or spouses.

It breaks down my confidence and self esteem and I disappoint you, the person I so want to please more than anything.

I wish you knew how painful it is.

It can make or break me.

In both your eyes and my own.

I am hard on myself because I know my limitations.

I strive for MY best NOT yours.

Too bad they are both so different for if u could only see it through my eyes you'd really be amazed.


I thought Leighann's words expressed perfectly what I have been trying to explain to Little Man's school.  (And what I seem to always have to remind myself of!)  The fact that Little Man knows things some times or can do a task sometimes does not mean he can do it all the time.  There gaps in his ability to retrieve information.  He's not being stubborn, or willful, or lazy.  He wants to do it.  He WANTS to please.  That is his nature.  Sometimes he just cannot.

Unintentionally we punish people affected with FASD for their successes by not seeing that it may not  be a sustainable state (or consistently achievable task) for them.  The variation may perhaps be caused by memory issues or perhaps because the tremendous effort it takes to produce that result is just not sustainable for long periods.  Either way its damaging to set them up for failure that way.

I am using Leighann's words to remind me (and my son's team)  to do two things:

First, compare my son's achievements only to himself.

And second, remember that he is not going to produce the same results consistently.  

And really, who does?  We are, all of us, humans not machines.  Neurotypical people may have smaller variation between their "on" and "off" days - but we all have "off" days.  Compassion and help really ought to be our default setting.