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.  

Going For It

I've been wrangling a post around and around in my head practically since I (re)started blogging.  I have not been able to get it quite right and so I keep churning and not blogging.  It finally came to me (yes I am slow sometimes) that it is more important to be talking about this than it is to have the single perfect post on it.  (if such a thing were even possible) So here are my current thoughts – miss mashed as they are – to get started.  I expect I’ll revisit it a lot.

We as a society appear really, even monumentally, bad at respecting neuro cognitive diversity to me.  (I’m not even going to get into diversity in general – my brain totally spins out of control if I try to tackle something that large).  This is not a holier-than-thou rant.  I include myself in that assessment completely.  I've already called myself out on it publicly here once but I catch myself in it constantly.

One of the examples I am mulling most recently is The Arc campaign “A Life Like Yours.”  I need to say first that I applaud their intent to make the public aware of the lack of basic rights for those that are "different" and I totally support the campaign for additional SS waivers and more services / supports to make non institutional living more accessible.  What troubles me is subtle.  Both the assumption that all people want "A Life Like Yours" and the suggestion that to be equal the lives of those who are different need to be the same as everyone else's assume the superiority of the "normal".    i.e. the slogan for the campaign both separates us into two groups "us" and "them" and posits that “their” life both should look like “ours”.   I'm left wondering but what if they do not want "A Life Like Yours"?

Beyond the catch phrase the Arc does say “This is a human rights issue that unites us as one. It far surpasses color, race, religion or even social status. "  I love that part.  When I asked the adult FASD community what we should "call them"  I met with ... crickets.  (As I should have) And then one kind soul responded saying "I call us people."  I was humbled.  He was right.  what we may see as their differences ARE NORMAL for them.  So I love that this is being addressed as a human rights issue - not a "disability issue."  But I wish there were away to discuss this and promote the need for equality of opportunity, and the equal value of all persons, without the implied or outright stated message that everyone’s life must look the same to be of equal value/validity.  

I believe all people matter.  I passionately believe that this is a fundamental issue for our country. (and the world but hell who am I to be trying to take on the world)   “We hold these truths to be self-evident, that all men are created equal…”  Our very foundations as a nation are based on just this issue and yes civil rights groups are actively pursuing the rights of the neuro cognitively diverse.  However, we all continue to define people who are different as people who are dis-abled.  Disabled fundamentally means “limited in movements, senses, or activities in some manner” and this definition does not include limited by WHAT.  Looking at that – aren't we all disabled at some time for various reasons?  Disabled does not have to imply deficient or not having / being enough.  And yet, if you were to apply the word “disabled” to someone who does not consider themselves to be, they would protest, probably quite strenuously.  Disabled does not have to imply deficient or not having / being enough but in practice it almost always does. 

This is important to me personally  because my child and my brother are going to face discrimination due to their FASD all their lives.  With where they fall on the spectrum they will be judged both "not normal"  and sadly also "not disabled enough."  With an estimated 15% of the population of the US having some sort of disability the chances are good that most people know or love someone with some kind of "disability".  Even those that do know or love some one affected personally should care.  As Martin Niemoller said:

When the Nazis came for the communists,
I remained silent;
I was not a communist.

When they locked up the social democrats,
I remained silent;
I was not a social democrat.

When they came for the trade unionists,
I did not speak out;
I was not a trade unionist.

When they came for the Jews,
I remained silent;
I wasn't a Jew.

When they came for me,
there was no one left to speak out.

Equal rights for all matters.  I will be honest - I don’t know how we change the subtle (and not so subtle)  pervasive denigration of neuro cognitive difference.  I wish I had a solution I could trumpet from on high. (I do so love the moral high ground - its a failing of mine.)  I still wrestle daily with my own personal bias, trying to see the world from my son's  and brother's view and then struggling to accept that as every bit as valid as mine.  Some times I succeed sometimes I fail.  One thing I am sure of  if we are not talking about this topic, examining it, working on it,  then there’s no way we will change it.  

I wish

I wish I could say something profound or important today but I'm too tired.  It started out a good day but it went down hill fast.  We had an emergency at my day job - you know the not being a mom part of my day.  They wanted me on a plane to" middle of nowhere, god forsaken cold, oh my god your kidding right" today.  And they weren't kidding.  So after a 2 hour briefing (and what about that was brief - not much) I got to run around like a chicken with my head cut off making travel arrangements, cancelling therapy  appointments, arranging child care coverage, writing out the million and one things I take care of like meds and packed lunches etc that my husband would not know and breaking the news to Little Man.

Little Man does NOT do schedule changes.  At least not without a lot of advance notice.  So I also had the joy of peeling a weeping flailing child off myself and thrusting him into his Nana's arms at the airport while he screamed after me, "Don't leave me mommy. Take me with you." I cried my way through security so that I could wait.  And wait.  And wait some more.  At 8:30 they cancelled my 6:30 flight.

Now I can type to you all while I wait some more to see if there is any way to get on a flight tomorrow or if all the additional flights cancelled have made that mission impossible.

At least I'll be able to hug Little Man in the morning - perhaps right before I tell him I still have to go and deal with the melt down again but maybe they will decide to scrap this trip.  Hey - I can wish right?

Spring Ahead Fall Back

There are certain rhythms, regular cycles, that mark progress through the year.  The turn of the seasons, special holidays, the start and end of the school year are all repeating points that I look forward to each time they roll around.  They are a part of our family’s day to day lives I find comforting and we have little rituals that go with each.  There are certain rhythms to life with my Little Man too.  I know whenever he goes on eating sprees, gorging as if he will never be full again, it is inevitable that we will be shopping for new clothes and shoes soon.  I know that his need to be hoveringly close, almost attached to me at the hip will wax and wane though the year at (semi) predictable points.  Some of his rhythms are less comforting though.  For example, I know before every leap in knowledge or skill, before every new milestone we mark will come the regression. 

Ah, the regression – the one step (or more) back we seem to be required to take every single damn time before he can move forward.  It used to make me tearing my hair out crazy.  If I said I’ve totally made my peace with it I’d be a liar but I weather it better these days than I used to.  I have my theory on why it happens and that helps.  I think as Little Man struggles to embed some new learning into his memory in a way he can retrieve, that it takes so much effort he becomes almost “mind blind” to things he has already learned for a time.  I used to be terrified that the new learning was pushing out the old, as if there were limited storage space in Little Man’s mind and at 3, 4, 5 years old he had already reached his capacity.  I was terrified that the vanished learning would be gone completely and have to be painstakingly relearned only to erase something else.

 

We’ve been through the cycle often enough now that I have confidence that whatever is suppressed as he masters something new is still there.  I don’t believe he is anywhere near his capacity.  I think his brain is just not very efficient at storing information and each time it has something new to store it must reshuffle where everything fits and then become familiar with where to reach each item.    Kind of like if gremlins came into your home and rearranged your whole kitchen in the night without leaving any clue they had been there.  When you got up in the morning to make breakfast you would still have a frying pan but it’s going to take you some time to find it.  Once you do you’ll be able to locate it again more easily each time you reach for it.  Until of course, those sneaky gremlins come in and put something new where the blender was and move it to another undisclosed location. 

As my fear of his “fall backs” has lessened however, his has grown.   This pains me far worse than when I was afraid and he just oblivious.   I know that it is growth in his self-awareness making it possible for him to notice when he is not able to do something he was just a while ago.  It’s one of those paradoxical things that only a special needs parent would understand, celebrating our child’s pain even as we mourn that they must feel it.  Little Man has ventured deep into the place I have just recently exited – the terror that what is missing right at this moment is gone forever.  He’s not ready yet to understand there are cycles and rhythm to life and that this is just his way of learning.  That is far too abstract for him yet.  So we both suffer in his regressions but now we do it together.  He turns instinctively to me.  I reassure him.  “It is ok if you can’t today.  You will again.  I know you will.  I am right here and I will help.”  I pull him on my lap, all long legs and poking elbows, bundled up as best we can in his rocking chair.  “Mommy’s got you.  I know you are sad (or scared, or mad).  We will do it together, ok?  I love you.”  And we do his favorite script over and over.  Him “Did you know you are the best mommy ever?”  Me: “That’s because I have the best boy ever.”

I am in awe of my boy.  No matter how hard, how frightening, how tiring, frustrating, or infuriating it is to have things that he struggled so hard to learn slip away he keeps going.  He earns, not just learns, each new thing with sweat and tears and yes sometimes even a little blood.  Over and over we practice the new skill and the old.  Sometimes for so long I think we will both go crazy.  And then – suddenly - he has both.  One day – the old is just there along with the new skill too.  He is the best boy ever.  And I am the luckiest mom.  

Tested Already

I had a very different post in mind for what I put up next.  The world intervened though, and my resolve to be less angry, to focus on the positive is being put to the test.  I thought about just following that old advice – "If you don't have anything nice to say just say nothing at all" but I believe this issue is one that comes up all too often to just ignore it.  I know I've dealt with it more than once and I believe all special needs parents do.  So I spent some time thinking about it, chewing it over, and trying – really stretching myself - to see it in the best possible light and not just go off.

You see, someone suggested to me that my baby, my son, my heart would be better off in an institution.  Even the very thought of that hurts me on so many levels.  Of course my first impulse was to lash out, to rage at them and at the world for ever thinking that was an option.  As always under the anger is pain.  “Do you think I am such a bad mother?  How can you believe I would give up on my son at the age of 7?  Why can’t you see the growth and joy and possibility in him that I see?”  And yet further under the hurt was my old companion fear.  “Maybe I am not doing what is best for him.  Maybe someone else could do better.  What if I am hurting him, holding him back from being who he could be?”

Stepping back from all of that to look for the love, the positive, the hope is very hard and very unnatural to me, at least it is right now.  Perhaps in time it will become second nature but hard or not I am trying to see it differently, trying to start putting my intentions to be positive, to live from a place of love and joy, into practice.  So where do I even begin?  I start by assuming good intentions on the part of the person making the suggestion.  I need to assume they want the same happy, connected, full life for my Little Man that I do and that they want the same for me, for all of our family and that this suggestion which pains and angers me so may be their best idea for how to help make that happen. 

It feels so gut wrenchingly wrong to me, probably because I believe passionately in inclusion as the best option for the neuro cognitively diverse.   (I believe this as an overall principle for ALL people but I also recognize that each individual is just that – individual.)  Perhaps the person suggesting this to me sees as I do that the world does not yet even come close to accepting, no less valuing, neuro cognitive diversity.  The efforts being made at inclusion for this group are by and large still efforts at forcing the individual who is different to conform as closely as they are able to the main stream vs efforts at adapting the environment to suit their needs.  This plays out along the range of scenarios from the small scale in Little Man’s class room everyday, to the much  larger stage nationally with the ARC campaign for “A Life Like Yours.”  Please don’t misunderstand me.  I appreciate the efforts the ARC is making to improve inclusiveness and rights for those that are “different”.   I even think that perhaps “a life like yours” is a necessary step in the evolution of thought to “we have lives that are different.  Both are beautiful and valuable. Together we bring more to the world because of those differences than if our lives were exactly the same.”   But "a life like yours" is still defining those who are “different” in terms of those who are “normal” with "normal" as the clearly stated goal.

Clearly this lack of acceptance and support is something that troubles me.  How very far short of the ideal we fall doesn't just keep me up at night worrying – sometimes it grips me in an iron fist of terror for Little Man’s future.   It is entirely possible that this suggestion was made out of a loving desire to protect Little Man, not a wish to move him “out of the way” or to “throw him away.”  I too want to keep him safe – of course I do.  I just believe I can do that best by keeping him close and fighting the battles needed to make the world more welcoming to him on his terms. 

A gentle explanation of my belief is much more likely to move us just a little bit closer to where I want to go.  Damn it.  I’d really rather kick some ass.  

Oh My God – They are all LOOKING at me!!!

(Is that worse than no one looking?  I don’t know.  Pull your self together.  Head up.  Shoulders back.  Smile.)

Today I received an e-mail that made me laugh and cry at the same time.  I’ve been going through a rough patch and so when I received a draft of the post that  A Diary of a Mom  will be posting tomorrow I desperately needed the validation and spirit boost it offered.  We are currently staring into another round of surgeries for my son to correct physical birth defects caused by fetal alcohol exposure, adding to that stress is the crushing indifference both our latest FASD fundraiser and training class have been meeting with locally.  (We are doing better in other locations but to be so dismissed where I live is demoralizing)  Our family also continues to struggle with lack of understanding at school for Little Man’s sensory needs.  Oh, and just a few days ago, I experienced a computer crash that has wiped out 2 years’ worth of work, personal and professional.  Yeah, you might say my spirits have been “a bit” low so the incredible generosity from Jess, whom I both respect and admire, overwhelming me?  Not really a surprise. 

What was surprising was the rush of fear that followed that lift.  Diary has a huge audience.  Not only is the scope of the audience daunting but, well, Jess is an awesome writer.  She blows me away with just about every post she writes.  (I actually would like to be her when I grow up)  Anyone that came from her page would be comparing me to that.  OMG!! What have I done?!? Is the web page ready?  I don’t know.  Maybe.  The blog is not ready. I’m sure of that.  It’s not well edited enough. There are not enough posts.  It’s not persuasive enough.  There are no colors or visuals.  It doesn’t have enough factual information.  I’m not qualified enough for this.  I’m not eloquent enough. I’m not anything enough. (Danger! Danger! Whirling red lights.  Blaring sirens.  Panic attack in process.  Total system shut down imminent!)

As I slowly resurfaced from that that moment of sheer terror something crystalized into conviction for me.  Too much of my parenting, too much of my LIFE, from the moment I finally accepted Little Man’s FASD diagnosis and started researching it, has come from fear.  This is not a new thought for me.  I had already brushed up against that topic here. 

Anyone researching FASD runs into statistics that range from grim - about 40% of individuals affected by FASD will not finish school, to terrifying - 70% will be institutionalized in their life for alcohol and drug problems, mental health reasons, or crimes committed due to their impulsivity and vulnerability.  But it is time to think beyond those statistics.  It is not time to bury my head in the sand (been there done that) or even to just say “No way not for my son” (been there for a long time too) but time to find things to say YES to,  things for me as well as for him.   Fear is not where I am willing to live anymore.  If you get back from the world what you put into it I have to stop living from a place of fear, negativity, isolation, and anger because that is not what I want for my son, our family, or for myself. 

“Be the change you want to see in the world” Mahatma Gandhi says.  I want a joyous, positive, connected life for my son, and for all of my family.  So I have to start living from this place:  My son is enough.  He is more than enough he is a wondrous gift to me and the world.  I am enough.  I am, in his words, the best mommy in the whole world.  There is enough for us to make a change; enough love, compassion, connectedness and enough people willing to help.  Those horrible statistics are what has been true but they are not inevitably true for the future. 

And in the spirit of living in a world where there is enough and I am enough,  instead of rushing to change, update, correct, and otherwise scramble to be worthy of the generosity Jess has extended,  this blog – as it stands - is what I have for you in all its imperfection.  I hope you will consider taking action on the advocacy letter.  And I sincerely hope you will come back from time to time.