we-love-a-child-with-fasd-3By @FASD_Mum

Special.  This one word has been swimming in my mind lately – in and out of focus, but always there.  Sometimes when it surfaces, my heart jumps with optimism.  Other times it makes me stop in fear. “Special” can mean different things in different contexts.

Our guy is suffering in mainstream secondary school this year.  No, he is not having the horrible kind of exclusion and belittling, uncaring experiences too many kids with FASD have at schools that don’t cooperate or engage with kids who have complex profiles.  On the contrary, our son has very able and willing teams of people trying their best to integrate him into mainstream education.  This is after all the law.

And yet, his chances of success have been crushed by massive far-reaching radical changes in national policy.  Here in the UK changes to national standardized tests – called GCSEs – are making it impossible for wide swathes of kids to succeed in school.  Now all students whether they are going to Oxford or seeking a manual vocation will have to take the same tests (previously there were other tests for those kids who struggle more).  Revamped content makes these GCSEs even more difficult and the policies now require that if a child fails the math or English GCSEs, he or she will have to re-sit the test time and again until they pass.

In US terms, this is kind of like requiring all kids to take the SATs, whether they are going to university or not, and forcing them to take it again and again until they get a certain score. We were told that in our son’s school there is deep, deep concern that he and others like him will not be able to pass these tests.  So, we are looking at years and years of dragging him off to school to sit in classrooms where none of his teachers really expect him to pass tests that are the focal point of all that is being taught – years and years of setting him up to fail.  Seriously?

He is already drowning on stress.  We are well aware of the statistics that show how kids with FASD brain injury are very susceptible to secondary disabilities – mental health issues, addictions, high rates of suicide, risky behaviors, incarceration, etc.  There is no way we want to put too much pressure on him in these years.  We can’t envision deliberately setting him up for failure.  What kind of sick system does that to vulnerable kids?

At the very time he needs more creative teaching to engage him, classroom teachers are becoming increasingly limited in what they can do.  One leading specialist asked us, “Your son may have a t-shirt that says on the front, ‘I was included’ – but will it say on the back ‘I was educated’?”  He said kids with FASD can learn, but the education has to wrap around them.  He said too often kids with FASD sit at the back of the room and watch others get educated.

That conversation struck home.  It went straight to my momma bear heart.  It rang too true.  We don’t want that for our guy.  The major complaint we hear from our son about school is that it is “boring.”  The way the classes are running, he is not able to access the information and it is getting worse as the teachers are feeling more pressures to teach to this changed regime.  Despite lots of suggestions from the professionals that have been engaged to advise the school on how to meet our son’s needs, on any given day in any given class it is too hit-or-miss as to whether or not all the strategies are being used by harried teachers to support his learning – teachers who themselves have had only limited education on how to teach kids with learning disabilities.

So – we have decided.  He will go to a special needs school.  We are still digesting the word “special.”  Still coming to terms with the missed opportunities and dreams that won’t pan out in a mainstream setting.  We are having to re-jig the way we view our son’s next steps.  We are, if I am honest, mourning a little.  We are mourning for loss of our dreams – the dream of inclusiveness, the dream that if we try hard enough we can carve out a space for him among his peers, the belief that society really does want to be inclusive.

Despite heaps of goodwill from the leaders of the school he is in, and despite every effort on our part, we have decided in this new educational environment our son does not stand a chance in mainstream school.  He is one of those kids in the gray area.  Some students need a different environment to be able to access education at any level and it is good that appropriate separate provision is available.  Our son is in a kind of no-man’s land.  Supported, his test scores are probably too high for a special needs school.  Unsupported, he fits.

Growing up in the USA, with its imperfections but lofty principles, every ounce of my being is conditioned against segregation.   But here we are.  Because of his disability we have started the process of segregating our son.

People react badly when I use that word – segregation.  But it is what we are talking about. We have spent a decade in our hometown working hard in many ways, on many levels, to carve a space for our son into this town.  We have been motivated by the conviction that “it takes a village” to raise a child.  It has been a consciously forward-looking strategy.  We know our son will always need those around him to understand and support him.  Someday we won’t be here, and we want those others in the town to know him and understand him.  We give to our community in hopes our community will give back to our family too.  That’s how a caring society functions.

Not one teacher, not one administrator, not one politician, not one educational or medical professional can ever have tried harder than my son to make this work.  Most of them have never come close to trying to understand his dreams and his hopes, to see just how truly special he is – in the proper sense of the word.  This boy is amazing.  I am an in awe of all that he is and all that he accomplishes despite having a brain with scrambled neural connections that make every single day of his life a struggle.

We need more compassion in this world.  We need more reassurance.  We need more people willing to take time out to just see the others in the room with them.  I hate the idea that because some bureaucrats in Whitehall have issued their decrees about standardized tests that in reality means our son now has to go behind a wall.  That he has to be segregated in order to have a chance at a happy adolescence, a chance to be able to have some ‘wins’ along the way.  I cannot believe the choices come down to this – planned failure or segregation.

It is not the kind of society I want.  But our son is not going to be a casualty in this nastier and harsher school environment.  He has been the canary in the coal mine too long.  The System has nearly sucked all the oxygen out of his fragile self-confidence.  We can’t let his spirit suffocate.

So, we will take him away from all that he knows, all those children he has grown up with for the past decade, his brother, his cousins.  We will entrust his creativity and his desire to learn and grow to another set of educators, with different skills, in a more flexible environment.

After days of pacing, wrestling with knots in our stomachs, feeling a deep, deep sadness, we toured local special needs schools.  There is one that looks amazing – should he get in we would be quite happy to do all we can do to help him flourish there.  But we know that even there our son may encounter a new set of challenges as he tries to interact with kids who have deeper communication difficulties than he does.  There is no guarantee moving him from mainstream school will be a success, and we are well aware there will be no going back.

However, this other school may allow him to be a leader.  For the first time ever, he may be a kid who is more capable than most of his peers.  It might be fantastic for him to be able to relax more and to explore his strengths in a more tailored setting, to learn the way he learns best, through music, dance, tactile experience, rather than drowning in a barrage of words in large classes in an overstimulating setting.  Maybe this other school can help set him up better for the next steps he will make.  We have started to allow ourselves to feel hopeful.  Maybe, just maybe this might be exactly what he needs.  That said, we are wary.  Time will tell if this is the right decision or not.

So, yes, we are moving our son to another setting.  Your kids won’t have to see him day to day.  You won’t have to explain to them why he is a bit different.  You won’t have to imagine your kids sitting at a table with him and wonder if that is helping or hurting your kids’ education or skewing the school’s ranking based on test scores.  You won’t have to tell me how your kid finds my son “irritating.”

But dear society, believe me, just because you are pushing him away, you have not seen the last of him.  He will continue to show you just how truly special he is.  Watch this space.  He is of this village and always will be.  We will find ways, create ways if need be, to keep him integrated.  We know there are many good and close friends in this community who will make extra efforts to stay a part of his life.

Shame on us all that it has come to this.  And for what?  Some misguided belief that reverting to the exam system of half a century ago is the answer to today’s challenges?

Yes, you bet I am sad.  But, don’t worry, I will rally.  We will be positive when the time comes for the switch to a new school.  We won’t look back.  One thing we have learned about FASD is that it is always possible to hit the ‘re-set’ button.  Our lovely, talented son has taught us about the great and inspiring power of fresh, new days.