Reveling

Little Man has always taken intense likings to specific words or sounds.  He repeats them over and over, in high squeaky tones or low booming ones, whisper quiet or ear piercingly loud.  He's never shown much interest in the meaning or context of the current favorite.  This week however, has seen a new development. I found him yesterday spinning in circles and mumbling something I could not quite catch under his breath.  What'cha doing buddy?  I asked,

I'm REVELING he sang out, still spinning.  And sure enough revel, revel, revel was what he was repeating.  Do you know what revel means? I asked him and he stopped cold not even swaying - when I would be staggering from the constant spin.

"Sure" he says, "I'm liking it a super lot"  and off he went spinning and reveling away.

After spending time on some of the negative stats surrounding FASD again, I needed to write this.  He reminds me of my friends RJ and Savanna and their word salad just now.  I really need to get them to explain it some time as they understand it.  From the out side it looks like just tossing certain words back and forth to each other - ones that satisfy their ears and mouths I assume.

But I watch how happy it makes them and it makes me smile to see.  I see the healthy, happy, wonderful people they are and I see the reflections of them in my Little Man,

And I am reveling in Little Man's revels.

Image is children playing on metal playground merry go round

34

There has been some stir lately over another blog post discussing the average life expectancy of a person affected by FASD.  The statistics currently published state average life expectancy for someone affected by an FASD to be 34 years of age. 

34

Let that sink in a moment.

Now an average life expectancy is just that - an average.   So by definition some people will live longer, even much longer, but some will live shorter, even much shorter.  The thing about the number 34 that makes an impact on me in a logical sense is that the average life expectancy for the general population in the US is 78 years, in the UK 81 years, Canada also 81years, but the average expectancy for persons with FASD is 34. Will some people live longer than 78- 81 years in the US, UK and Canada - sure. Will some live shorter - absolutely.  But the difference in average life expectancy is MORE than 50%!!!

To put it in an even wider perspective – people affected by FASD have a lower average life expectancy than  the average person in countries with the lowest overall life expectancies in the world (per the World Health Organization’s most recent statistics).  Sierra Leone, the Central African Republic, the Democratic Republic of the Congo, Guinea Bissau, Lesotho, Somalia, Swaziland, Angola, Chad, Mali, Burundi, Cameroon, and Mozambique all have average life expectancies that fall between 48 and 60 years.  It’s no accident that these are also listed as the poorest countries in the world. 

It is absolutely unacceptable that the average life expectancy of someone with a neurocognitive disability be less than half of that of the general population of the same country.  That the difference in average life expectancy for persons living in a first world country to compare so unfavorably to the poorest of the poor boggles my mind. Especially because those with FASD do NOT have to have such reduced life expectancy. If our countries were putting more time and effort into studying the real health challenges associated with FASD and supporting the neurocognitive differences associated with it that average could absolutely be improved.

To look at the number yet another way – Autistic persons have an average life expectancy of 54 years – lower than the general population in 1^st world countries but significantly higher than 34.  The average life expectancy for Autistic persons has also been increasing – at a slower rate than that of the general population but with a noticeable trend.  The statistic for those with FASD has not. 

34

I never would have believed that one number could loom so large.  

34

My Little Man just turned 10.  

34

If we both live out the average life expectancy for the population we fall within, my son will die 2 years before I do.  

Impossible

No


Just, NO

I cannot and will not accept 

34

8 out of 10

There are a lot of people touting an 80% divorce rate for parents of special needs children.  The statistic gets so widely hyped that although there is NO research to back it up its almost universally believed.  There are some limited studies showing less shocking increases in the rate of marriages failing for special needs families but honestly my heart is not in the search for an objective truth at the moment.  Because you see my marriage is going to become a part of those statistics.  That is a hard, dreary, depressing thing to type.  Knowing you have failed at something so important is, well, it's not an exaggeration to say it shakes me all the way to my core.  My very identity feels shaky.

I'm not going to talk about fault or who has done what to whom here for a lot of reasons.  I've never been comfortable with the extent to which people seem to live all of life out in the public eye these days.  And although I can see many of the mistakes or missteps that happened in our relationship along the way (on both sides) I can't quite grasp how we went from having the usual stresses and dissatisfactions that occur in any relationship to where we are now.  Finally, as one of the two people in the relationship ending - I could never be an objective reporter and airing only one side of a disagreement strikes me as fundamentally unfair.  

I will say this, our children - both of them, are not to blame for this.  No matter their issues or the stresses those issues may cause - they are children and not in any way at fault.  Fault, if blame must be laid, rests on my husband and I.  We are the adults that made promises to each other and we are the ones choosing to lay those promises aside.  I know I have not handled this well up to this point.  I've let anger and grief and fear have the upper hand.  That can't continue.  

And so I'm taking some time, to put myself back together, to find a new vision of what my future looks like, and a make a new plan for how to get there.  I'll try not to take too long.  I promise to be back.  

The Golden Ticket

There are too many things crowding my brain these days all competing for attention at the same time like a bunch of unruly toddlers constantly interrupting each other and shoving one another out of my lap before I have even registered fully which is there.  I can’t seem to impose any order there inside my head so I’m spewing them out here in hopes that on paper they will be more manageable.  That I’ll be able to order them into some understandable pattern I can then address.  I have to stay as I get started I’m not very optimistic.

Little Man told me a story this morning.  Or more accurately I coaxed one out of him based on a random comment he made to me.  As we were driving back from the grocery store he told me

“Mom I wish I could dive in the pond and swim with a fish.” 

I could have just let it go with a “Mm Hmm that’s nice honey”  (I’m ashamed to admit that many days I probably would have – I let myself get to busy with things that don’t really matter)  But instead I turned down the radio and asked him, “What would you do with the fish?”

“We would play tag” 

“What kind of fish would this be?” 

“Big….and friendly …. And white with black fins and tail.”  (This, of course, is the color of the gold fish that swims the little tank in his room) 

“And what would you do after you finished playing tag?” I asked. 

“We would eat peanut butter sandwiches and laugh and laugh and laugh.“

My brain is trying to weave all those many things that have been jumping about in my head into that short interchange; Little Man’s communication struggles and what to do about them, his trouble making friends at school. The behavior issues we’ve been seeing at school (and home),  the wider issues with public schooling in general, the need to make the world more inclusive and accommodating.

How easy it is to miss what is really important in an interlude like this if we don’t stay in tune with what is going on in each moment!  Little Man’s inner life and imagination are so rich.  Yes of course it must be frustrating for him to struggle so to share it.  There will always be time to worry that his imaginary friends dominate his life because he has so few real ones.  And time to be sad that the world is so rushed all the time they can’t slow down enough to know him.  But the real wonder here is that he stays so sweet so funny and so interested in the world that rushes by him. 

I have no idea where I am going with this post.  Trying to spill my thoughts out on paper is not making them any more manageable.  I am sad that I can’t seem to find a way to make the world work better for my beautiful boy but I’m also so overwhelmingly happy that I have him, that when I remember to slow down and really try, I can peek into his world.  It is a world of magic and whimsy.  It is such an unimaginably lovely place, one where little boys and silvery white fishies slump together in tired contentment munching on peanut butter sandwiches after a long golden afternoon’s play.

I stumbled across an artist James Browne recently – one that draws fairies and elves and magical pictures that he inserts his own little boy’s image into.  I wish I had that kind of talent.  I wish I could illustrate my Little Man’s dreams but sadly I struggle to make stick figures look presentable.  I suppose that instead of bringing his world out for all to see what I really need to do is spend more time entering into it with him and just enjoying the fact that I am welcome there.   I am one of the few, after all, that has been granted an entry ticket.

Little Moments

Watching my son write  "I love you" in the frost on my car window makes up for all the rough starts we have had or ever will have.  

The Hardest Part

I was asked recently, “What is the hardest part of parenting a child affected by FASD ?”  I was rather stumped by how to answer the question.  Should I say – it’s all hard?  Because it is.   That makes it sound like it is only hard and nothing could be further from the truth.  I find great joy in parenting Little Man but there are certainly hard parts.   Besides it feels like a brush off and really it does nothing to help people understand.  So then, what do I say?  What is the hardest part?

I could talk about the sleep issues.  It’s been 7 years since I’ve been able to count on stringing two decent night’s sleep in a row.    It is better now than it has been in the past.  I can remember a time when I was lucky to get 2 hours sleep a night.  You don’t really “function” on that little sleep – in fact I can’t say you even really survive – more just exist.  It was brutal.  Even though it is better than that now it can still be very hard.  But is it the hardest?

Or is the hardest part feeling like you have to be on your toes with an eagle eye out for every possible thing that may happen next – so you have a plan for addressing it – for smoothing the way- the unrelenting  vigilance you need to maintain that feels almost like being in combat zone? 

Is it the million and one appointments, details, schedule adjustments, medications, therapies, preferences, and accommodation strategies, you need to carry in your head?

Is it the judgment you come across in the teachers, administrators,’ doctors, therapists, family, friends and even random strangers in public places?  How dare she let him get away with that kind of behavior?  What is wrong with parents these days?  I would sort that out in a weeks’ time let me tell you.   

Is it that there is no “expert” to turn to in the field that knows just how to resolve your child’s issues?  That in addition to no experts there are rarely even people more than passingly familiar.  That every place you go you have to be the one to educate.  And that in many places even though the person you are dealing with is totally uninformed your knowledge, experience,  and input will be immediately discounted because YOU are not considered an expert – you are “just a mom.”  So you have to act as if you are completely certain – so that people will listen, and even consider just a little what you are advocating, all the while you are desperately uncertain and wishing there was some certainty, somewhere you could find to answer your own questions.  Is this really what is best for him?  How do I help him the most in the long run? 

Is it the endless debate you hold with yourself and the world about to medicate or not?  There are worlds of words I could write on that alone. 

Is it the outbursts of violent behavior that happen?  Is it worst when they are nearly constant rages or when they are sudden and unpredictable storms that come out of nowhere?

Is it the medical emergencies,  the constant noise,  the  co morbid psychiatric issues, the stress, the depression, the tension on other relationships?

I think the answer is that the hardest part is the part you are struggling in right now whatever part that may be.  The hardest part changes from person to person and for any one person from day to day struggle to struggle.    We had a rough morning Little Man and I.  I was overtired and I did not cope well.  I left him at school feeling wretched.  Like I’d started both our days off on a horrible note.

Today for me, the hardest part is feeling like I’ve failed him and not for the first or last time.  The hardest part is knowing that at its very worst for me – all of this is still easier than it is for him; that while I have one small person to deal with whose mind and reactions and impulses are not intuitive to me, the whole world is foreign to him.  I deal with one small fraction of what he copes with all day, every day.  For him the entire world is too fast, too loud, too abstract, too arbitrary and too rigid.  The hardest thing is listening to him cry because “Nobody doesn’t like me.  I must just be bad all the time.”  The confusion and alienation and pain he suffers.  For me, for today - That’ I’d say is the hardest part.

So Much to Say there are Just No Words

There has been a lot of chatter on line these days about this new PSA

Go watch - see what you think.  I'd be interested to hear.

I've listened to parents say how good it is to see an ad that shows the truth about how hard FASD is.  I've listened to other parents talk about how hard this is to watch and how much it hurts them to think about their own children in these terms.  I've listened to adults on the fetal alcohol spectrum and to outsiders who have no personal connection to our community.  I find myself in bits and pieces of all of their comments and still somehow struggling for my own words.  I've asked permission to share some of theirs and where I have received it I will but I feel like continuing to wrestle with it myself is important.  For me this video cuts to the heart of the dilemma I struggle so hard to express over and over here.

 If we know how to prevent a difference should we be doing so?  Does that make the difference automatically “BAD”?  There are so many differences we have learned to accept – imperfectly true – but in this wholly imperfect world we have made at least some space.  Those that are blind or deaf or paralyzed or of different skin tones or different religions or different sexuality are not automatically shunned or separated.  To be sure racism, sexism, homophobia, religious persecution, ableism all still exist but they are no longer universally accepted.  There are people who will stand up and say “NO – this is not acceptable!”  And they are not only the people who ARE different fighting and pushing back on that hate.

What if though, what if we knew how to “prevent” homosexuality?  Or blindness?  Or a particular belief system?  Would it be ok to run public service ads promoting prevention?  Especially ads that focused entirely on fear – on the worst possible outcome for their lives?  Would it be ok to film a PSA that showed a young deaf boy – never taught to sign or lip read- punished for not hearing until he became depressed, violent, abused alcohol or drugs to escape his pain and confusion, ran away and living on the streets – to encourage women to – I don’t know - what ever prevented deafness in this hypothetical construct.  Having had many deaf friends in college (I attended a school with a specific program for deaf students) I feel pretty safe venturing the guess that the deaf community would be up in arms and they would not be alone.  How about an ad that showed a young homosexual being bullied and shamed into depression and possible suicide attempts then being killed by thugs like Matthew Shepard?  So that women would avoid what ever "caused" homosexuality?

I’m not saying that the information about the cause of FASD should not be out there – should not be widely distributed to the public, that we should not try to minimize the number of children born exposed.  But I AM tired of the relentless negative portrayal of those affected.  I’m tired of seeing their struggles and pain shown as inevitable when huge parts of those very struggles are preventable.  Let's work on prevention - lets work on prevention of their pain with understanding and support.  Being born deaf, or blind or homosexual or to a certain set of religious beliefs or of a certain race does NOT doom one to a life of misery and destruction and neither does being born alcohol exposed.  

Still Cogitating

Sorry guys.  I haven’t moved on from yesterday yet.  I am still obsessing over the teachers comment about how wwell Little Man "blends in"  and why it’s so important for a person to "fit in" versus "stand out".

I think of my father as I type this as much as I do my son.  My dad was a man that learned with his hands.  He scraped through his high school education, not because he wasn't smart enough to excel at learning, but because he could not stand to sit confined to a desk while he did.  My dad built his own computer back when computers were not yet commercially available,  set up a local area network in our home in the late 1970’s around the time LANs were first popping up in industry, and taught himself how to do both by working actively with his hands.  He learned to program in multiple computer languages simply by sitting down and trying to do it.  At one point my Dad maintained global time synchronization in several wireless networks via satellite for a large multinational bank.   He had a dedicated phone line in our house that was for the computer in his bedroom.  He was on call 24/7 if there was an issue.   I know that the technology I am talking about is very “old school” for today but it was quite advanced for the time.  This is a man that never went to college, he barely graduated high school in fact.  Today he couldn’t even get an interview at most companies that do the kind of work he did.  His education pattern didn’t fit the standard mold.   Sometimes it feels as if we have completely lost sight of the words of Antoine de Saint-Expery   “He who is different from me does not impoverish me - he enriches me.”

It feels to me our culture is getting more and more narrow minded.  We have set up systems of education, of employment, of everything really, to favor one set of characteristics over all others.  We all lose something under this system, even those who have the “favored” characteristics.  We lose the richness that comes from diverse thought and different life experiences.  We straight jacket what it means to be “successful” and then we steadily restrict what paths one can take to that goal.   Everyone has to fit into their pre-slotted box.   I wonder how in a country founded on the idea of freedom we have so completely forgotten that “The smart way to keep people passive and obedient is to strictly limit the spectrum of acceptable opinion, but allow very lively debate within that spectrum....” Noam Chomsky  

Instead of working to cultivate diversity of thought and experience our culture works actively to whittle down any parts of a person that don’t fit; most often with threats of physical, emotional, social or mental harm, but sometimes with actual harm inflicted. 

Last Friday a teacher heard some commotion in the boys’ restroom at Little Man’s school and when she went in she found another student choking Little Man.  The school is reacting appropriately.  I am by no means trying to slam them by sharing this.  (People who read here will know from past posts I am more than happy to call them out if need be.)  In this case, the new administration at the school is all over it but it takes time to change a culture.  Not just the school culture but our overall culture.  “Culture will not change just because we desire to change it. Culture only changes when the structures supporting it are  transformed – the culture reflects the realities of people living and working side by side every day.”  - (with apologies to Frances Hesselbein)   And this is why I am still fussing over that one little phrase.  Because in the end it is not little.  It is everything.  

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?"

Keeping It Real

First I want to say I meant every word I said yesterday with all my heart.  But no matter how passionately I believe that Little Man is a glorious gift – not in spite of his FASD – but just exactly as he is, some days I fail.  I fail to see his gifts.  I fail to live in the moment with him.  I fail him. 

We had one of those last night.  Little Man has to endure a fairly unpleasant clean out process every so often because of the damage to the nerve cells in his digestive system.  This is not an optional thing.  It’s not vitamins or some therapy that I hope will be helpful to him.  It’s required to prevent some nasty, even potentially fatal, complications from his digestion issues.  (I’m trying to avoid a lot of overt poop talk here but if you want to understand more read about it here.) 

I hate doing it. He hates having it.  He insists he won’t.  I insist he must.   Last night we both insisted down to the bitter end which resulted in him having the treatment and me having the crap kicked out of me.  Sometimes things go more smoothly.  Mostly they don’t though.  It’s bad enough he has to endure the treatment.  He shouldn’t have to manage my losing my temper over it too.  But I’m human.  Getting kicked and scratched until there’s blood drawn hurts.  I raised my voice.  A lot.  I told him “You hurt me.”  “Yes, I am mad at you.”  And he cried.

It wasn’t long before he was back to his sunny self. I told him I was sorry for yelling.  He told me he was sorry for hurting me.  We kissed and snuggled for story time before bed.  We talked about it again this morning; about how important it is he have his clean out so he doesn’t get sick, about how it would go easier for him too if he didn’t fight with me during it, about how even if it goes very badly and I am angry I still love him forever and always.  He seems fine about it now but how much did I add to his fear and stress about it next time? 

I can’t know the answer to that.  And no matter how I try I can’t be perfect.  So I draw comfort from things like the advice from Mary Anne Radmacher “Speak quietly to yourself & promise there will be better days. Whisper gently to yourself and provide assurance that you really are extending your best effort. Console your bruised and tender spirit with reminders of many other successes. Offer comfort in practical and tangible ways - as if you were encouraging your dearest friend. Recognize that on certain days the greatest grace is that the day is over and you get to close your eyes. Tomorrow comes more brightly...” 

The Heart in You is the Heart in Me

image by Olivia House Photography - found on Pinterest

I talk most about the impact of prenatal alcohol exposure (PAE) to the brain because that is what impacts my son’s daily life the most.  But alcohol exposure in utero can adversely impact any part of a developing fetus.  The impact is, as always, dose dependent, meaning the more alcohol the larger the potential impact.  What feels that impact, i.e. what part of the developing child is affected, depends in a large part on the timing of consumption and what is developing at that time.  Many people focus on the first trimester as the most critical time because the development of the fetus is most dramatic then but the truth is parts of a baby are developing the whole 9 months and while the most severe damage (including fetal death / miscarriage) is most likely in the first 3 months – some pretty rotten stuff can happen from alcohol exposure at any time during the pregnancy. 

One of the potential issues people seem unaware of is how PAE can affect the heart.  People with prenatal exposure are at risk for defects to the tricuspid and mitral valves leaving them either malformed, missing, or dangerously thinned (which then allows blood to flow backward into the atria); ventricular septal defects, commonly known as a “hole in the heart” between the left and right ventricles; and enlargement of the left ventricle, the primary pumping chamber in the heart.  Any of these issues, when serious enough, could cause the need for surgical correction.  All of them if present, even in a milder form, make the heart work harder and age faster than normal, leading to the increased risk of heart disease in general in the future.  the first sign of these sort of problems is usually a heart murmur found during an infant exam.

Development of the heart begins during the third week of pregnancy when most women are not even aware that they are pregnant.  Alcohol interferes with the migration and specialization of the cells forming the structure of the heart.  It’s worth noting that one study by Case Western University showed that a single binge drinking episode timed at the beginning point of the heart’s development was sufficient to produce dangerous impacts to the heart. Genetic background is of course an important factor in moderating alcohol's effects on the developing fetus. 

It is common for babies exposed in the womb to have a heart murmur that fades away by one year of age. Unfortunately because PAE has been found to reduce the ability of the heart to contract at the tissue level the risk of developing heart problems does not fade even if the murmur does.  Most parents, upon hearing that a heart murmur has “resolved” would consider that any danger of cardiac issues had past.  Little Man had such a murmur.  Its long since gone.  While I don’t talk about it often it is something that stays in my mind.  Because of his prenatal alcohol exposure his cardiac function is something we will have to worry over – and perhaps monitor - his whole life. 

I've been thinking about this more recently because I have been having some concerns about my own heart health.  Which, of course as any personal health issue does, leads me into worry about who will take care of my son someday (hopefully a long, long time from now) when I am not here to.  Today, I refuse to travel down that rabbit hole of fear though.  Instead, I'm going to remember what Little Man said to me the other day about hearts and family and love.  

"Love is when you feel warm and safe because you have your family in your heart." 

Yes baby.  Yes it is.  

Reactionary

So I saw this quote circulating today “If you focus on MANAGING someone living with Fetal Alcohol rather than trying to CHANGE them, you'll get better results. “ and almost clicked back into ranting angry mama mode.  (As you may recall I’m trying to be more positive here because I believe it’s best for me, for my son and brother, for all the folks affected by FASD and well just for the world really, right?)

 I find the statement that we should be managing folks with FASD just as wrong-headed as the idea we should be changing them.   (or focused only on preventing them from existing)

How is “being in control of”, “directing” or “commanding” (all synonyms for “manage”) really all that much better than changing a person as a goal? 

What I try to do for my son and for my brother is to love them and to really know them.  I appreciate their strengths, and I accommodate their needs.   I work to manage their environment, the expectations placed on them and my own reactions to them.  What our society ought to be focusing on for all people affected by FASD is essentially the same.

We do not seek to “manage” other persons with physical differences.  We don’t “manage/ control/ command” those who are not mobile.  We understand their needs then provide accommodations like wheelchairs, or scooters or other equipment as appropriate to their general and specific situation.    We do not expect that they walk up stairs.  We make ramps or curb cutouts or elevators available.  We uphold their basic human rights and offer reasonable accommodations.

Persons with FASD should be treated no differently.  It’s just that simple.  Isn't it?

Happy, Happy, Happy

Little Man is just making progress all over the place at the moment.  I used to be the person always looking to the next challenge instead of enjoying the now.  My son has taught me to savor the moments like this week when I heard him self advocate for the very first time.  He has said something cute about wanting to go to Disney world and both Nana and Daddy started asking him to repeat it and to recall all kinds of moments from the trip we took there 2 years ago.  I could tell they were overwhelming him but before I could step in and try to slow them down Little Man threw up a hand in the classic "stop" pose and said, "I don't want you to talk more right now.  Its too hard to think."

Wow!!  Just wow.  We talk to Little Man about how all brains are different, about how his need more time sometimes and mommy's needs more quiet than his does and daddy's brain doesn't work good early in the morning.  We talk about asking for what we need.  "Hey buddy mommy needs a little quiet time ok?"  "How about you and I go for breakfast and give daddy some more sleeping time?" But I've never been sure how much of that he understood or was taking in.

How totally awesome to see him reflect it back and make it work for himself!!  I'm doing a fist pumping boogie over here.  This is even bigger than the shoes!!

Image is from the baby fist meme all over the internet

Taking the Bad with the Good

That's what life is made of isn't it, the light and the dark and all the shades between? We've had developments at both ends of that continuum this past week. I don't know about you but I like finishing on a high note so let's just get the low point out of the way first shall we?

Those that know us will recall that Little Man has ongoing issues with being able to pass his stools. To short cut for those that don't, Remember those old "Buns of Steel" exercise commercials?  I don't know off the top of my head what metal is stronger than steel but all of Little Man's lower digestive tract is made of whatever it is.  Without an enema he will never give a shit. Seriously. Never.  (Sorry for the rude language but really how could I let that one go by?)  we've been to all kinds of specialists and tried more therapies than you can imagine. Where we are at is what we've finally come to as the best of the bad choices we have.

In spite of being the best of the worst, the weekly dosing needed to cause a bowel movement is still a truly miserable time for all of us.  He lets loose both ear and heart shattering screams during the administration process.  After that he wants me to kneel by the throne and hug him while the medication does its thing. Aside from the unpleasant location and the unbelievable stench that comes with passing a weeks’ worth of waste, there's the extra helping of guilt that layers on when he wants me to comfort him from the misery I just inflicted. 

 And now, just as of last week, to make the whole business more painful (literally) he has officially become too strong for me to manage on my own. I hobbled away from our last encounter with 3 bruises, each more than 2 inches in diameter, that blossomed into a gruesome black green yellow combo and a fairly impressive knot on my head. Thankfully, I was able to complete the procedure without inflicting any return damage but I'm pretty dang sure that this has just become a two man job from here on out.  Trying to find the silver lining in this my darling husband pointed out that all the physical therapy Little Man has been doing is really starting to show results in improved strength and gross motor control.  I let him live.  I'll need him for next week's unpleasantries after all.

Moving on to the more pleasant developments, Little Man has started TYING.HIS.OWN.SHOES!!!  This is huge for us, like beyond just my faux all caps shout.  It needs to be in letters 50 feet tall covered in glitter.  Most folks faced with serious fine motor control issues and problems with motor planning would just go for the Velcro or slip ons but that is not an option for us.  Little man has some real problems with his feet and he has to wear custom orthotics (you don’t even want to know what those suckers cost) and lace up shoes to insure his foot problems do not get worse.  We’ve been working on shoe tying for, well forever really, but seriously with his OT at school and in private sessions and at home for a year and a half now.  And suddenly one day he just did it.  I am so proud of him!  Not just for the new skill but for the patience and perseverance to keep at it for so long.  He just rocks!

Speaking with a Different Voice

The letter below is one my brother John wrote to his mother while he was in drug boot camp following his parole violation I wrote about here.  So many people, including me,  parenting children with FASD struggle with our feelings toward birth mom's that drank while pregnant.  We tend to be the louder voices more often than the people directly affected.  This weekend I took John to visit his mother's grave.  I wanted to share his thoughts and feelings in his own words.  With his permission of course.

Dear Mom,  

                                                                                                                                               

There are many things I never had the chance to tell you for closure.  I know we talk every night when I pray but my thoughts are always very scattered and I wanted to write it down so you can see it in some type of order.  First I would like to say I love you and miss your presence very much.  You always knew how to brighten up a room in every room you walk in.  That to me was an amazing gift.

No matter how many times you left me that hope you would come back to make everything bright always remained. Every night I prayed for you to get better and every day I waited for you to win your struggles with addiction right up until you finally left this earth.  Never was I mad at you, Mom.  But when alcohol and drugs finally took you my hope was crushed.  That hope was the thing that held me together.  Not once was I mad at you.  Even though your addictions caused us a lot of hardships.  In my heart I know you did your best and you did everything you could to make us happy.   So never in the world would I have changed any of you.  You were so beautiful and such a free spirit.  I could tell that even when I didn’t see you from those photos of you with that crazy hair style. 

I know I may not always have been the best child or easy.  It was so hard to trust you whenever you came back but I always would in the end but it never would work out. And I have my own struggles now, Mom.  Most of the reason I am writing you is I can no longer hold your baggage and my own both.  That same weight that kept me together before, I fear it is tearing me apart now.  Today, I feel strong enough to heal and be happy.  I can work on my problems with addiction.  I can accept my disabilities from your addictions.  Being strong has allowed me to remember the good times with you. 

I will never know how you knew your time was up but I am so glad you came to me and I thank you for those last moments with you.  Those are moments I would like to remember so I could share them with my younger siblings and hopefully my own kids sometime in the future.  I feel stronger now because I can accept the bad and the good.   I can let it be past and make a plan for my future.   I am ready to forgive you and keep you in my heart with me forever.  I love you, John.

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? 

Inconsistency Thy Name Is - Me

You know sometimes I think anyone reading this blog would have to come to the conclusion that I am the most inconsistent, changeable  (hell fickle) person in the world.  In one post I'm talking about my son's irreversible brain damage and then not one month later railing at anyone considering him damaged.

I'm still a work in progress there is no doubt.  Part of me still sees FASD as the enemy, as something horrible that desperately needs to be eradicated.  That part is ruled by fear - it not only hates to see how much my son and my brother struggle, how hard they have to work for every small gain, but it constantly extrapolates into the future what terrible things may befall them.   When I step out of that fear, that gut level visceral reaction, I can see that is the very view making the world so hard for them.

And that is a horrifying thought I need to just sit with for awhile...

I, no matter how much I love them, am part of the problem.

That thought alone is enough to be rather crazy making.  But I believe it.  If I am busy hating something unchangeable about them then I am hurting their sense of self worth.  I am rejecting at least a part of their very identity.  And I am supporting a world view that says:

Your existence is wrong.
Your way of thinking, of being, of experiencing the world is wrong.
You need to be changed, corrected, fixed and prevented.

What a horrible horrible way to treat someone you love.  What a horrible way to treat anyone.

So I keep fighting that view of FASD personally as well as publicly.  I keep reminding myself - even as I tell others - variation is natural.  There are scientists who speak very eloquently on the importance and value of biodiversity.  Unfortunately I'm not one of them and so I struggle not only to communicate it but sometimes even to understand it.  Even through that struggle though, I do believe it.

So please, bear with me here.  I'll get better.  And all of us together will reshape the world to a place that really understands and values the strength that difference can bring us.