Defeat is the Enemy

my-heart-broke-for-the-thousandth-time-watching-him-rage-against-this-world-and-the-pressures-we-put-on-him-to-conform-2By @FASD_Mum

He was on the floor, screaming, his voice hoarse from crying.  He did not want to go to school. He tried to tell us this in every way he could.  It started as soon as he woke up, “Mum, my nose is still running. [It wasn’t.] I have a cold.  [He did, last week.]  I can’t go to school.”  Later on he changed his approach, said his tummy ached.  Then he switched tack and told us he doesn’t like school, it’s “boring.”  “I want to stay home with you.”  As his more peaceful entreaties failed to sway us, as we brought out the school uniform and steamrolled past his comments trying to get him dressed, his panic began to escalate and became palpable.  It stopped being words, started being actions.  Running up to his room, hiding under covers.  Going into his calm space, pulling the curtains, asking us to leave him alone.  We asked him how much time he needed, gave him a few more minutes as we have been advised – so that he had some say in how the morning should go.  But the clock was moving, and we had another child to get to school.  Work to do.  We really needed him to go to school.  He fed off our growing tension, things got worse. Five minutes later, when we went back, he was still not ready.  We ramped up even though we knew we shouldn’t.  He really didn’t want to go.  We really needed him to go.  Things started flying.  Chaos, again.  Fetal Alcohol Syndrome does not make for gentle mornings in our household these days.

Before this morning was done, he became fully dysregulated.  His brain was overwhelmed, locked in fight and flight mode.  We were beyond getting out of this calmly.  He was screaming, crying, kicking, pleading, begging, entreating me directly, “Mummy!”

My heart broke for the thousandth time watching him rage against this world and the pressures we put on him to conform, hating ourselves for trying to bend his will to a system that is not designed for someone like him.

And then, there it was.  The moment of defeat.  He had surrendered.  I could see it in his eyes.  He disappeared a little more inside himself.  He lost his battle, again.  He headed off to school reluctantly with my husband, shoulders drooped.  Shattered.

We all are shattered. This morning was like most mornings these days.

I ache inside for what he loses every time this happens.

I don’t think that his teachers understand what it costs him just to walk through the school doors, through the halls, to sit expectantly at the desk knowing they aren’t really talking to him, aren’t really expecting him to light up with the answers.  Every single time he goes into school is an act of courage.  Lately it also is increasingly an act of defeat.

We have finally understood the need for change.  We have heard him.  We do listen.  We are making moves to get him to a special needs school now – especially since it has been made clear to us that the changes in mainstream education leave no place for someone like him.  We see that he is being set up to fail.  But bureaucracies move slowly.  We are not at all certain we will be able to get him into the school we want him to attend.

We are in a no-man’s land.  We have told him we will look for a new school and that it will take time.  But he really is struggling, and he needs something to change now, today, this minute.  For someone with FASD “taking time” is a hard concept on a good day.  And these are not good days.

He has regressed – playing games, watching shows that he used to like several years ago. His little being is so tensed up with anxiety that he has no resilience, no give-and-take.  He is always 30 seconds away from exploding.  His senses are super heightened.  I ate a raspberry the other day, and he instantly asked “What’s that smell?” and pushed me away because it was unexpected.  These are days when we have to tiptoe gently since a meal can be rejected due to a wrong spoon, a slightly different type of sausage, fish fingers that are not Birds’ Eye batter-dipped, or if someone “breathed” on a spoonful of food.  These are days when tooth-brushing is like a physical attack, when the way a hair band grips can lead to a massive meltdown, when a bit of water on a paddle ball racket has people ducking for cover amid instant mayhem.

It is heart-wrenching.  And exhausting.  We are living on edge as this school situation sorts itself out.  We are not the only ones.  There are many, many people whose kids are being forced to fit into classrooms that are not bending enough for their needs, classrooms that are constricting creativity to be able to meet the demands of the new guidelines regarding GCSEs.  There are too many kids with FASD who go into schools that fail to recognize this as a disability and don’t make the necessary “reasonable adjustments” to allow that child a chance to succeed before he or she fails or acts out or crumbles under the pressure.

I dread the defeat I see more and more often in his eyes.

No, worse than that, I fear it.  That defeat is the enemy.

I want him always to rail against this world, to stand up for himself and his beliefs, to think that when he tells people what he needs in a moment they will listen to him.  I hate, hate, hate that despite the fact he has told us in a million ways that school is overwhelming to him, that he is not happy there, that he cannot access what is being taught in the way it is being taught, we still must force him out that door.  It makes me question my parenting.  It makes me feel selfish.  It makes me feel like I am not doing my Momma Bear job of protecting my cub in a mean and sharp-edged world.

So, we bend in other places.  I find another spoon, quietly put aside the fish fingers that are not batter-dipped, dig through the refrigerator for something else he might or might not eat.  Lately, nearly every day  after school he is so beside himself with pent-up anxiety he has a meltdown-that-comes-down-on-us-all-like-a-ton-of-bricks, even though we have come to expect it.  Afterwards, I sit with him for hours in the dark.  I just sit there next to him, hoping my presence calms him, proves to him that I am on his side. Together, we wait for that moment that always comes at the end of these long days, with a little sigh somewhere just before sleep, “Mummy, I love you.”  “I love you too pal.  I love you too.”  Sleep tight.  Sweet dreams.  You’re a good kid.

We know that secondary disabilities are a huge threat to the well-being of people with FASD – too many tender lives are shortened needlessly as a result of addictions, dangerous behaviours, suicides – by-products of the toxic frustration that builds in kids with limited coping mechanisms who feel misunderstood, outcast and who seek temporary fixes to feel better.  We hear that policy makers in London are concerned about our kids’ mental health.  The young royals try to raise these issues through charity work.  And yet, no one focuses on the significant proportion of the population with brain injury due to FASD, whose mental health is at stake and worsening as a result of inaction and lack of support from The System.

The government’s sweeping changes to education policy is making it worse, not better, directly impacting the daily lives of kids like our son.  Scenes like the one I have described are happening in front halls and/or in schools across the country as the children signal that they are unable to cope in an environment that is too rigid.

What exactly, I would like to know, are we expected to say to our kids, you know, the ones who try their hardest but who just aren’t going to get those grades? The ones that are in the grey area – getting by, barely, but at such a great cost to their self-esteem – the ones none of you really think are going to cut it in the new system…?  The ones who know it too, who rail against going out the door to school for very legitimate reasons.  The ones who have no choice when the entire adult world comes down hard on them to just go to school, no matter what?  The ones who get detentions for not doing homework they didn’t understand, who crack jokes rather than show that the teacher’s instructions passed them by?  The kids who are bullied or the ones who lash out?  The ones who didn’t have support and, yes, failed that test again?  What do we say to stop that mind-numbing defeat from taking over their whole being?

We tell them we love them.  We seek every possible way forward, banging on every door that we know.  We reach out to other parents. We seek experts who can advise us.  We ignore those who say we have to live with things the way they are.  We don’t give up, and we don’t let that defeat seep into our kids’ inner core.  We hold onto them.  We cherish them.  We tell them at the end of each and every long day, we love them.  We are there for them.  Together we will find a better way.  And somehow, deep inside, we have to believe it. It’s hard.  Oh, yes.  It’s hard.  But we have to keep that spark alive.

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13 thoughts on “Defeat is the Enemy

  1. Oh how this resonates in our house. Luckily we have just been able to move Nathaniel to a SEN school that is right for him. Yes there have been teething problems, we checked out a variety of schools for him but this one seems to fit as much as any do. Not as much fighting in the morning re getting ready for school. Still have the “I don’t want to go” but not so vehemently more a case of not wanting to leave me as opposed to not wanting school. He’s doing school work now which he has not done for 3 years. 4 weeks in and he is settling down. He’s 9 yrs old and he is so much better where he is x x x good luck hugs and love x x it’s a hard road we travel but always for our children we go on and keep up the fight x x

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    1. Thanks for sharing your experiences – I am so glad to hear the new school is helping. We were told by the head teacher at one SEN school that the sooner the kids get to them, the more they can help. Hopefully having made the move at 9 years old will in the long run be very beneficial for your son. Thanks again – all good wishes…

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  2. It’s so hard and unfair for our kids. We too have those mornings and evenings. Weekends are so much better…..until she realises it’s nearly Monday!

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  3. Your blog helps to keep me sane, i could of written this myself over the last few weeks, the meltdowns and desperation which have unfortunately led to self harm. Trying to juggle what you know is best for your child with the needs of others in the family and with what the system says you should be doing. Sometimes it feels like fighting a loosing battle but we won’t let it beat us. Thank you.

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    1. I’m oh so sorry to hear this, there is so much pressure on too many kids/families. It’s so frustrating that support is so hard to find. It is a juggling act, trying to get the balance right. Keep on fighting the good fight. You are not alone. And thanks for the kind words… xx

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  4. i live in fear of this, that my little man who is so loving but has all the early signs of FAS will have to cope with a world that doesn’t understand and cant make room. thank God he has you to keep loving him its his best chance xx

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  5. Home education has been a life saver for us. Ds2 has HFA. He is back at school now with an EHCP and is a changed person after two years home education from Year 7. Wish I had done it years earlier in primary. Home education gave him confidence and friends and we enjoyed all the time we spent together. Two other kids in school; they are happy there. My heart aches that your little one has to endure this anxiety and defeat day after day. It doesn’t have to be this way.

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    1. Thank you so much for sharing your experience. It’s something we have often wondered about. For sure, the way it is now is most definitely not working. Hoping a special needs school might provide a more appropriate opportunity for success, but if not we will certainly consider this. All good wishes to you and your family.

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