Slow It Down and Listen

BLog_SlowDown

By SB_FASD

The phone was broken.

Trainers were hurled against the bedroom door.

The day had been building to this. The car fuel warning light had pinged on. Traffic was heavier than usual. It was too cold outside. His finger was sore where he had bitten it. The car was rubbish. The queue in Subway was too long. He wanted to go home. Now.

The week had been building to this. School was boring. There’s too much writing. A teacher was out ill. His tummy was hurting. He doesn’t want to go back to school for one whole week. He needs a break. Two weeks. The pogo stick is too small. His toenails are curved. The unicorn cupcake tastes like washing up liquid.

There had been an incident two days prior where someone he didn’t know tried to contact him via his phone. It led to a concerning scene that ended up with his dad, me and the head of year in the deputy head teacher’s office, all praising him for doing exactly what he’d been taught to do. He had told a teacher. He hadn’t returned the call. The incident was – we think – benign, but it had scared him and us. This phone had caused angst this week. He hadn’t tried to break it. It had dropped. A few times over a few days. The screen was dead. He was beyond coping with it. With anything.

We were there, in this moment. The phone was really and truly dead. We were home alone, just he and I. I was tired. Really mentally and physically done in. It was the first day I had been out, shopping, in more than a month since having had the plague.

I started down the wrong path. “What do you want from me? (said with a bit too much oomph) I’m sorry the phone is broken. But WHAT do you want me to do?” Those eyes ready to crumble caught mine.

And I stopped. Quickly. I had voices in my head. Voices of adults with FASD who have over years helped me to see this scene from another viewpoint.

I swallowed my frustration. I forgot about the money. I forgot about the warnings I had given about needing a better phone case.

I just sat down by him, silent. Quiet until I was ready.

I gave him a hug. To his rambling, steady stream of barely connected thoughts and anxieties about how he should never have a phone, he can’t be trusted with a phone, they’re all rubbish anyway, he shouldn’t have a phone until he’s 20, I just said,

“It’s okay. You’re okay. I love you.”

I offered to give him a foot rub with lotion. I saw he was frantically scanning the room and everything he was seeing was upsetting him. I wasn’t sure more things would not soon be flying. I was in my head trying to think of who I could call because I knew this night, this night I might not be able to handle this. I was frazzled and still slightly ill. I felt my self-pity rising. I started wallowing in it, feeling it was unfair that once again it was me having to defuse yet another situation. It was borderline at this moment. I suppressed my rising distress. I narrowed us down so we both could forget all the rest of it. I needed to get my head on straight.

I asked him to close his eyes and just to concentrate on his feet. I rubbed his heals. I know he likes that. I added more lotion, warmed up in my hands first. I didn’t say anything more for several minutes.

Our heart rates slowed. The stream of unintended words had stopped. We were just there. In the moment.

Finally after the tension had melted a bit, I suggested we go sit on the bed in my room and watch a favourite movie. It reminded me how long it had been since we had done this, side by side, close.

He had brought some journals into the room with him. I wasn’t paying close attention. He opened one. I was still fiddling with the remote, trying to get the movie started. I was, if I am honest, desperate for an electronic solution to the evening’s tension. He put the booklet directly under my nose. This was important to him. The movie wasn’t the point here.

Again, I slowed down. I shut up. I listened.

I looked closely. I recognised it. It was an old home-school diary, the one with the rainbow cover. We haven’t used this in well over a year, with a different teacher, a different Key Stage. He had remembered he still had it. He opened it to a blank page, instructed me to pick up a pen, to write a big “2019” on top of the page. He told me he wanted me to write to his teacher. He told me what he wanted it to say.

He hasn’t been having his sensory breaks at school. He needs them. He feels like the rules have changed, he is not allowed to go to the sensory room this year. He wants to know why. When I said the teachers tell me he is allowed, he was insistent. They are NOT letting me go, Mum. (Listen to what he is saying, I told myself. This is important.) He told me he loses house points if he goes out of lessons. (What?!? But I stay silent, I listen, I write, and I plan the next email to the school in my head.) He misses the time when he gets to relax during the day with the school dogs. He feels like it’s all too much sitting.  Too much writing. He said it is just like his old mainstream school. It’s changed at this specialist school. He can’t handle it. He doesn’t want to go.

I wrote it all down, increasingly amazed at the moment that was unfolding.

He was using his words. He was using the tools he knows that are available (tools I had forgotten) to express his needs. He was instructing me in how to advocate for him. Somehow, in his non-linear way, he was showing me the root of all that had happened today, this week. The cause of his escalating anxieties, the reason why our house has become increasingly tense over recent weeks.There is a reason.

There is always a reason. Sometimes many.

I seem to have to learn this lesson again and again and again.

Meanwhile, after we put the diary down, after he tucked into a tray full of his favourite snacks, I snuck a peak at my phone. There was a ‘situation’ heating up in an online group. An adult with FASD was expressing raw frustration over the way parents and carers too often vent their frustration in support groups. It was reminding me with sadness of recent comments and posts I have seen. One adult with FASD said (I paraphrase), “We know what people think of us. We know. We internalise that every day. We need our parents to be our safe haven.”

I vowed once again to always try my best to listen to what my son is saying to me, to always speak with him and about him with respect.

Everyone with FASD is the primary expert in themselves.

We need to be the experts in listening to those we love and sometimes in serving as their translators. Because, even if sometimes a person with FASD – big or small – might be unable to form the words and sentences in polite ways or in pretty paragraphs that help us ‘get it’, there are many ways different actions, behaviours, anxieties and sensory issues show us hints that there is something we need to understand better.

Like, say, when unicorn cupcakes taste like washing up liquid.

The best, most effective thing we can do sometimes is simply slow it down and listen.

 

FASD, Teens & Technology – What’s a Parent to Do?

FASDTeensTechnology
By MB

A theme kept popping up at our support meeting recently. It provoked, as it always does, a lively series of comments with distinct points of view. Do you let your kid/s have access to technology. How much access?

It’s something we thought long and hard about long before our younger son was diagnosed with FASD. His older brother loves his tech. He’s a good programmer. He’s a skilled gamer. His understanding of tech is strong and his interest high. So little brother was introduced to computers early on. And we had decisions to make about screen time.

Managing kids’ access to technology is a difficult question for all parents. How much time to allow your youngsters on their phones, on games consoles, watching TV? When do you let them have a phone? How do you keep them safe online? How to manage social media when bullying, sexual exploitation, financial fraud and other issues are so rife?

How much harder are these things to manage with an especially vulnerable group of kids like those with Foetal Alcohol Spectrum Disorders? How can you keep a child safe online when their ability to read social cues is, at best, extremely limited? How can you prevent a child becoming obsessed with an app or a game when repetitive behaviours are a known feature of their condition? How can you keep a child from seeing inappropriate videos when their ability to search for material and use a device far exceeds their capacity to understand what they might be about to watch? Is it wise to give hundreds of pounds worth of phone, or tablet, or laptop or console to a child who can suffer from meltdowns at frustration and risk breaking them?

Neither the questions nor the answers are simple, and they vary child by child and across family circumstances. There is no right answer. But, for what it’s worth, here’s how we have managed things with our 14-year-old with FAS.  First of all, we gave him simple rules: not too much skin, no rude words, no violence no talking with people you don’t know in real life. By and large, for the moment these still work. He explores the edges of the rules, but doesn’t jump in and swim past red lines. He internalises what is right and wrong in a fairly rigid way, and has done this also with online life. Even to the extent that, when watching his favourite band Little Mix, he won’t watch videos of them dancing “dressed in porn”, as he puts it. (Not quite sure where he picked up that word, probably an internet safety class at school.)

So, as long as he follows the rules, we let our youngster have more access than many would think is wise. But for him it works. It isn’t perfect. He has, in frustration or in the midst of meltdown for other reasons, broken phones, tablets and bluetooth speakers galore. This is the easy bit. The organic consequence when something gets broken is that he is without it for as long as it takes to replace it. And we don’t hurry replacements. Everything carries replacement insurance. Either the Amazon Fire for Kids (which they really do replace without asking why) or just phone insurance that pays for the next when a phone is broken. The consequence of delayed replacement is important, it follows naturally from the breakage and emphasises that this is something that can be accepted as resulting from a symptom of FASD, but not otherwise. He broke a laptop two years ago and we are just now thinking about replacing it.

For us the type of device acceptable was also easy. All of them. Any of them (within our budget). They each have a purpose, a different use and each can be valuable in its way. The Wii is now an ageing console, but its games still have a place in our son’s life. They tend to less violent, less scary – much more suitable for him than many of those on offer on other consoles. From the simplicity of Wii Sports, to the deductive reasoning needed to complete Lego Harry Potter or one of the Hannah Montana games, it’s amazing to watch as his thought processes strengthen as a result of puzzling out parts of games involving characters he loved. These were, genuinely, life skills he was learning. For fun, he learned to make movies with one game and to sing his favourite songs with others. The Wii will probably soon have to be replaced with a Switch, but its role will be the same.

His tablet, restricted to appropriate content, was a real boon too – before it was broken. (Still not replaced.) For our son, a cartoon like Tom and Jerry can be a tool for building social awareness. He showed us a picture of an angry character with a bright red face – “look, that’s what I feel like sometimes!”. He learns social lessons from his favourite YouTubers. Their extreme actions, looks or sounds show him the boundaries of acceptability. He watches things time and time and time again, figuring out what is socially acceptable and what is not. He also made hundreds of videos of himself making faces, saying things different ways – we believe this was his way of exploring how to act in situations. For a kid who finds social cues hard to read, this kind of education is vital. He doesn’t really watch much TV. He has a mini-DVD player and watches movies at his own pace, in his own way.

From his phone he gets music. The love of his life. Streamed music. He uses it to calm himself. In an evening after school he will rock in his bed to loud, loud music. Calming himself. Erasing the stress of the day. Building down from potential meltdowns. It matters so much. The phone also works to connect him to friends. Being with someone can be hard for him. Sometimes joint activities don’t go well. Social situations can be hard to navigate. Rigid thinking can bring tensions. Kids that both have multiple disabilities can easily misunderstand each other. Being with them across a distance of miles on FaceTime can be easier. We hear him joking, laughing, talking, enjoying friendships. It doesn’t mean it’s always perfect. One friend couldn’t understand that calling repeatedly as late as midnight wasn’t ok. But, overall, it’s a tool that helps build relationships. It could be dangerous. While he doesn’t (yet) break the rule about linking with strangers, he has been very happy when social media accounts linked to popstars or TV personalities have sent him messages, after he left messages for them. The risk of inappropriate contact is there. And for a child with delayed social development, the risk is heightened. So we talk to him about who he is talking to, and we have access to his devices. We work at keeping him safe.

It’s not just at home that technology helps. In school, the use of a netbook in lessons helped our son to focus before lessons. Typing allowed him to get ideas from his head to the page in a way that handwriting never did. Suddenly, instead of a line he could write a paragraph, as he could type quickly enough to express himself, whereas he couldn’t hold an idea in his head long enough to write it out with a pen.

And this is the future too. The role of technology in our society is growing. It surrounds us, penetrates our lives in ever increasing ways. He will use phone apps to manage his life. He will be able to speak to his phone to find recipes, generate a shopping list, buy groceries online, do other shopping. He already relies on YouTube videos for instructional videos for everything from slime to hairstyles to recipes. Microsoft Office has built in voice recognition software he’ll be able to use to read documents, write them, send emails and more. He will be able to manage his prescriptions and doctors’ appointments through an app, we do already. We are at the beginning of mindfulness apps that help people manage stress and anxiety and contribute to reducing the possibility of meltdown. All this will help him build a measure of independence in adult life that would otherwise be impossible. The opportunities are, at present, seemingly almost limitless.

We’re not naïve. We are aware of the dangers. We guide our son to use online services and entertainment as safely as possible. We know that for many the use of screens is a huge problem. That obsession with online content is a real risk. That there are predators. That some are unable to have access to games with in-game payment safely. We know that what I have described is our reality, not that of others. If things change, we will change our rules.

We have chosen to work hard to help our son access technology because for our kids technology is the future. It can help them navigate life with FASD. It can be a massive support. They will have to deal with it as it becomes omnipresent in all walks of life. Our job is to help our son do so safely, to help him thrive. In the meantime, if you stumble across his YouTube channel, give him a like and leave a positive comment, it means everything in the world to him.

FASD: Rethinking ‘Learned Helplessness’ & Empowerment

learnedhelplessness

By SB_FASD

“Learned Helplessness” – this phrase was bounced around in a meeting with the school recently. I keep going over and over it in my mind. When I first saw it on a paper, I recoiled. When it was being discussed I felt defensiveness and anger bubbling up inside me. I had to keep looking to my husband to see how he was reacting. As a school governor, he knows how to wade through the lingo. But this one was new to both of us, and it did not sit well.

Here’s why.

There remains a prejudice – even in progressive places, even among the most supportive of people – against the idea of encouraging a person to acknowledge and seek support for tasks that others can manage. A look of horror shadows across someone’s face when we try to explain that FASD is a lifelong condition, that our son will always need scaffolding and support. The defensiveness I feel is that they are questioning me as a parent, thinking that I am ‘babying’ my growing teen, denying his independence, not preparing him for the hard, cruel world.

Oh, how wrong that is.

In seeking to help our son identify when he is overwhelmed, in giving our son the words to describe his need for people to break down their instructions, in providing our son technologies and strategies that allow him to remember and complete multi-step projects, in helping him understand those things that overwhelm him and in explaining why his brain finds certain things quite difficult, we are giving him the very tools he needs for his future independence.

Forcing him to write by hand something he can easily type is not overcoming learned helplessness. Giving him technology to unlock his thoughts is showing him how he can communicate all that is inside of him.

Giving him support to organise himself and what he needs to carry from lesson to lesson is not selling short his abilities, it is removing a needless stress – allowing him to focus on the other more important things rather than using all his mental energy for that purpose.

Helping him get dressed for school in the morning is not over-parenting him, it is creating an environment where he feels less anxiety allowing him to make the major transition of the day with as little stress as possible. (And no, don’t worry, I do not intend to be helping him to get dressed when he is 20.)

Yes, I do understand that water finds the path of least resistance and so do children. Sometimes. I do understand that making things too easy can become a self-fulfilling prophecy. No one is advocating under-estimating the considerable talents of my child, or any child.

In fact, I have sat in meeting room after meeting room in school after school and office after office doing exactly the opposite – showing teachers and professionals that they are the ones underestimating our incredible son’s abilities. Understanding how his brain works, suggesting the supports he needs to overcome the challenges he faces as a result of his brain wiring, this is not making excuses – this is providing insight and explanation for how to help him be all that he can be.

You may balk at the idea that a grown person will need to take motion breaks, to find some way to get deep proprioceptive impact regularly throughout the day to help himself stay self-regulated. You may think that ‘he has to get on in society,’ and that he has to ‘fit in’. That he needs to ‘learn’ to not need these sorts of breaks. But you would be wrong. There are ways as he grows older that he can meet this need without having to crawl into a ball pit. But if there is one available, and if he asks to go to it and is denied, then it is not me making him feel ‘less than’. Together we can find other ways for him to get this needed input as he grows. We have been teaching him since before he could talk to squeeze his fingers slowly, to squeeze my hand when we are in a crowd and I will squeeze it back (our secret signal, we squeeze out the syllables for ‘I love you’ in a way nobody notices). He will learn other ways as he grows older, but the answer is not for him to learn to just sit still. That will never be his answer. We have done star jumps in crowded hospital waiting rooms. Would you rather he sit there in distress until he can no longer handle the stress and have a meltdown? Who cares if this is not the ‘done’ thing. Maybe the world needs more ball pits and star jumps for us all.

This really isn’t about one school report. It’s not directed at any one individual. My strong negative reaction to seeing that phrase there in black and white is the result of a much, much wider frustration.

People out there need to understand that Foetal Alcohol Spectrum Disorders are lifelong. Practice and repetition helps. It is highly probable and desirable that with enough consistency some things that today need significant scaffolding might in a few years’ time be do-able by rote.  That is the goal, the vision. Strategies we practice and discuss time and time again will become second nature. We have already seen this happen, seeds of strategies planted years ago are starting to bloom. Every lesson is being processed inside that amazing and complex brain of his – but we all of us need to measure ‘success’ in a different way, on a different time scale.

And – this is essential – we should not remove those supports once he is doing well.  No,  that is just cruel. That is setting him up for failure. The supports, when they work, need to be there on a daily basis, consistently.  He’ll let us know when and if he can go to the next level.

Too often we get into a pattern of crisis, supports, end of crisis, removal of supports, crisis looms again.  That cycle is because those around him – despite lots of training in other conditions – still fundamentally do not understand FASD. This happens also in homes and other settings. Things start to improve so we lighten up a bit and voila, things unravel again. The supports are not temporary. They are needed permanently.

You would not remove a hearing aid just because the person started to hear better.

In reading definitions of learned helplessness while still chewing (choking?) on the phrase last night, it occurred to me those who think this is happening are getting it backwards.

“Learned helplessness” occurs when a person figures that there is no point trying to avoid or change something negative because efforts to change it have failed in the past.  The danger of our son learning helplessness comes when he asks for a sensory break and is denied.  When he starts to believe there is no point in telling the adults around him he is struggling because they won’t change the environment.  It comes when he gives up trying to find the words to explain why this project, that assignment, that topic or this particular journey is too difficult for him to wrap his head around in the way it is being presented, to hard to endure because of overwhelming sensory input.

People with FASD should not have to learn to ‘grin and bear it’. They should not have to spend all their emotional and cognitive energy trying to contain themselves, to perform one limited task. It should never be about writing one sentence when there are supports available to help them write in paragraphs. What’s the goal? We don’t want a child to use every ounce of their energy trying to remember their PE kit or trying to sit still for the next 30 minutes. We want them to contemplate the cosmos, to study the beauty, colour and rhythms in the world around them. We want them to open their thoughts to the magnificence of this mysterious planet, to learn about great lives and small wonders. We want to hear their voices, really, truly hear the songs their souls are singing. To do that, those of us supporting individuals with FASD need to think very carefully about what we are doing to unlock their potential and worry less about how to tame them to conform.

No, my child is not learning helplessness.

He is becoming empowered.

Just watch this space.

You’ll see.

 

 

Why a Broken Screen Can Make Me Feel Good

we-love-a-child-with-fasd-9By @FASD_Mum

I am willing to admit I might be grasping at straws here, but today the smashed screen of our son’s Amazon Fire Kid’s tablet represents progress to me.  I get that I may be taking counter-intuitive parenting to an extreme, but here’s what I have been thinking ever since this happened at about lunch time today:

  1. He instantly communicated he understood the trigger for him.  “I don’t like it when the games time out before I can finish!”
  2. He recognized that he could have handled his frustration better. “I always throw things too hard.”
  3. He came to find me after it happened. “I broke it.”
  4. He trusted he would not get in trouble.
  5. He tried to problem solve. “There aren’t too many cracks on it.”
  6. He did not have a meltdown, but wrapped up in his duvet like we have encouraged him to do.
  7. He did not break my phone, which was also within reach at the time.
  8. Within 15 minutes we were able to recover his good humour, and jolly him out the door to singing lessons, without any rooms being destroyed in the process.

From the parental side, we did better today (if we don’t count our one epic fail, which I will address below):

  1. We responded when we heard a problem, but not by going in with sirens blaring even though we kind of knew a piece of electronics had just been sacrificed.
  2. By mutual, unspoken consent I went forward first, gently asking what had happened.
  3. We did not erupt in frustrated and harried verbal sparring between us. We kept the tones low.
  4. My immediate response was to reassure him. “It’s okay.  You’re not in trouble.  Where is it?  Let me have a look.  It’s OK.  You didn’t mean to break it, did you?”
  5. I quietly moved the broken tablet out of view, and started to scratch his back.
  6. He was making noises from under the duvet cocoon he had created – I quietly asked him a question about something unrelated to get him talking and back into a verbal mode. I kept repeating it quietly, to give him time to register the question. “What songs are you going to sing today at voice lessons?”  Wait a few moments.  “What SONG do you think you are going to SING today?”    “Do you have a SONG?”  Repeating the main word, understanding he might only be hearing every third word or so until he calmed further.
  7. Without too many words, I helped him out of pjs and into his day clothes, even avoided things flying when he was having trouble getting his foot into his beloved new gold-plated heeled boots which @FASD_Dad had very wisely brought up, a silent encouragement that yes, he could wear these out today and isn’t that cool?
  8. I instantly responded positively when he suggested his singing teacher might like it if he were to bring her a treat, like sweets. Of course I knew he had ulterior motives, but I commended him on being very thoughtful in thinking what the teacher might like.  I did that on purpose, to start those positive feelings flowing again, to get to “yes” ground again after the negativity.
  9. When I said to @FASD_Dad that our guy wanted to stop at the shop for sweets, he had already heard the deal, quietly agreed without batting an eye and without mentioning smashed tablets, and they were off.
  10. After the singing lesson, @FASD_Dad kept him busy with some of his favourite Saturday activities- they went to the charity shops (where he scored his 2000th marble run), filled up on food at Subway (which was vital), before visiting his grandmother and The Auntie.
  11. When they came home, we all sat and watched a music DVD in the living room that is still filled with Christmas lights and the (artificial) Christmas tree because our guy (and his older brother it must be admitted) don’t want us to take them down. So we haven’t.

So, why am I feeling good?  As I say, I am willing to admit it might be grasping at straws.  The little one is up in bed.  He is calm and at peace.  We are all calm and at peace.  The house is kind of pretty in the multi-coloured glow.  Rather than feeling like a failure doomed to bad luck for not taking down these (minimal) decorations, I am seeing it as a positive.  I am responding to our guy’s wishes, giving him control over this – it hurts no one and he’s right, it’s kind of nice.  I guess I am feeling good because we are learning.  We are far from perfect, but we are learning.

Readers of the blog may recall some earlier catastrophes with tablets and phones, including The Worst Day Ever.  These incidents were horrible, traumatic, and had knock-on effects for weeks.  But, we have learned.  We got the Amazon Fire for Kids when it was on sale because it has a great kid-friendly replacement policy (or at least, we will see how parent-friendly that is in coming days).  We understood there was a risk, and we researched and took precautions so that we weren’t losing a ton of money.  We don’t get any electronics now without buying a replacement package.  Our son has a disability.  Things happen.

I also am pleased because even though electronics are a hot button between my husband and I sometimes, we worked through it today, in synch, and we are okay.  I am feeling good that our guy knew he could come to me even if something pretty bad on the scale of things in his world had happened, and that there is not one hole in one wall as part of the aftermath of frustration and hurt and disappointment that a favourite piece of electronics had been broken.

He will face some natural consequences.  He will have to bring an old Leap Pad with less grown up games on it during his 30-40 minute taxi rides to and from school until we can get the replacement sorted.  We will not hurry that process.  He will be without this for a while.  We will gently reinforce with him during this time that when he is feeling frustrated he should put down electronics and punch a pillow if he has to, or take deep breaths.  We will talk about this a lot, just not now.

Yes, it is counter-intuitive parenting.  In the world I grew up in I would have been sent to my room, grounded, and I would have had to work around the house to earn money to replace the item.  And that all would have made sense for the kid I was.

But we know our guy has brain injury that means he cannot always control his impulses.  That surge of frustration when that totally-annoying-game-just-did-not-give-him-enough-time-AGAIN-when-he-was-working-so-hard-and-was-nearly-there…that ARRRRGHHHHH moment that we can all recognize floods his system and because of the way his brain networks are wired, the other ‘thinking’ part of the brain sometimes just cannot kick in until, oh no! It’s already broken.  And-now-what-should-he-do?

There is no amount of ‘punishing’ that will change that wiring of his brain.  The best we can do is put in place strategies to ensure conditions are the best possible to avoid him getting that frustrated or overstimulated to begin with.

So, if there was an epic fail today, it was mine.  I was on the computer from the moment he came downstairs this morning and I knew he was on electronics for too long.  I made a choice this morning not to enforce our ‘no screens weekend mornings’ policy that has been completely ignored by us all over this past hectic month.  I knew it was getting late, he hadn’t eaten properly, and that he was likely to be unhappy about having to get ready to go to singing after a cozy morning at home staring at screens.  I could have, I should have headed this off.  He even said to me yesterday that I am on the computer too much.

I am not saying that to have others tell me I shouldn’t feel bad, and I shouldn’t kick myself.  I am not.  As I said, I am at peace.  I feel good.  I think I am speaking for my husband as well.  Today, we showed signs of growth as a family. We all of us – big and small – spotted where we slipped up, we talked about where we didn’t ‘follow the script’ and what impact that had.  We comforted each other, and we moved on and recovered.  So, yes.  It was a good day.

But I am not going to take credit for that.  Our guy is a super star. He is working at things.  He really is.  He is trying hard, in his way and in his own time, to implement the strategies.  He is more resilient than he has been in a long, long time.  We believe he is having a new chance at being able to do this because such huge pressures have been lifted from him by switching to a special school.  He had been using every last ounce of his will power to get through those school days in his old school.  Just yesterday, we were discussing that his appetite is starting to climb as well.  He actually wants to eat much more often than previously.  Across the board, we all are progressing.

So here’s the small hope we toss out there to those who might be needing it:  if we could crawl out of the hole we had been falling into, others can too.  I guess that is the main thought for the day.  These parenting strategies are not really rocket science.  But they rely on us practicing and developing different reflexes.  This doesn’t happen over night.  It is a process.  I am sure the pros out there are shaking their heads reading this, and I imagine they could find 50 things we did wrong today.  I am sure readers have spotted some things we could have done better as well.  We welcome advice and comments.  We are far, far, FAR from perfect.  We are muddling through.

But none of that changes the fact that for us, today, this was progress.  And in a world that moves fast and is full of tense and challenging moments, we have to take time to celebrate the positives.

So yes, I am choosing to look at that broken screen and allow myself to feel good.

“The Worst Day Ever”

This %22Worst Day Ever%22has been brewing for a while.

By @FASD_Mum

Tears slowly welling in the corner of his eyes, our son has reached some new level sadness.  He usually storms or screams or flashes out in frustration, shouting his misery with short, sharp bursts.  Curling up on the couch, silently crying, this is new.  And for all the times I thought his outbursts too extreme, too tiring, too much, now I wonder if I fully understood there is something worse.  We just sit here in this new space.  In the ten minutes he has been home, he has repeatedly said this was “the worst day ever.”  I am not yet sure just how bad it all was.  But I deflate inside.  I have a quick vision of him curled up like this in his future, on more lonely nights with more silent tears.  A lost and confused soul in a world that doesn’t conform to the way his brain works.  I stroke his head.  I do what I can: I tell him I am sorry the day was a bad one.  I ask him to move closer so I can give him a cuddle.  I tell him it won’t always be like this.

Our son’s beloved phone got crushed today at break time.  Smashed, actually.  By him.  Because he couldn’t find his “VIP” pass for the food line during break.  The pass that allows him to skip ahead and avoid the several hundred person scrum, with all the noise and chaos so many hungry teens can create in a small harried space.  The two items are usually in the same pocket.  In his hurry, he wouldn’t have been thinking that the phone is expensive.  He wouldn’t have been thinking that it would break if he threw it.  He wouldn’t have been thinking.  He was upset, overwhelmed in the moment, probably hungry and confused, and he threw the phone.  I imagine him instantly seeing the damage.  I imagine his fear at seeing the broken, shattered screen.  I imagine he just cried.  And then the other parts of his brain realized the phone was broken and probably unfixable.  And distress would have set in.  Luckily his older brother saw him crying and guided him toward help.

Today is Monday. This “worst day ever” has been building for a while.  Let’s rewind to last Monday.  That was the day he didn’t go to his afterschool homework club but went to a local shop with friends.  That’s the day when one of his friends texted us to say he had stolen some candy.  That’s the day we marched him back to the shop and made him give the candy back to the store security and shake hands.  That’s the day we gave the shop a note with his picture asking them if they see him in the shop without an adult to please call.  (What our son doesn’t know is the sign also explains he has brain injury due to FASD and doesn’t always link cause and effect.)

Last week was long and difficult.  Kicked dogs, spitting, shoes thrown, foul language, extreme behaviours.  A very long week.  Calls out to the doctor (who has been away on holiday) seeking advice about switching medications since these behaviours are new, increasing, and alarming.

The school had warned us his that on Friday his science class would cover in utero damage to fetuses from alcohol and did we want him to attend.  We offered to go in for the class.  We offered to talk with the teacher.  We asked to see what they would cover.  They said they decided to limit what they would say, that they would go into it in more detail in Year 9.  We still don’t know exactly what was said in the class, but we do know that after the class our son had innocent if inappropriate questions for a female classmate.

Then, this morning.  A cold, grey, Monday morning.  Our son told us in every way he could that he didn’t want to go to school.  He hates science (first lesson today), he hates sex education, he hates learning, he doesn’t want to go to school.  He kicked his shoes off outside.  He tried to go back into the house.  It almost felt cruel to be encouraging in the face of distress like this.

And guess what? The day was in fact “the worst day ever.”

I tease out tidbits over more than an hour.  I kind of get a picture, but it’s all jumbled.  Disjointed.  I hear about big kids that knocked over little kids and spilled coffee on them, including my son – but FASD scrambles time and while it wasn’t today it’s hard to know when this all happened. It’s another reason why he wants a different school.  I still don’t understand what is happening with the Illicit Candy Ring and money and why our son whose pockets we shook out this morning now has a pound on him.  Why he was standing under a tree this morning, rather than go to class, was it because we took four pounds off him before he went?

I fear people are mistreating him but I can’t identify the threat, I just feel the danger lurking in these tween years.

And now we have silent tears.  Internalized pain.  And I stare down the long road ahead of him and ache inside for him.  He reels off the specifics of several different models of phones.  He cautiously asks about replacement despite my non-committal responses.  He sobs because his “memory” is on the phone.  (I shrug it off, I assume he is talking about how many gigabytes he used up.)  He cries because his friends’ contact information is there.  But as he talks, I realize this phone, infuriating and imperfect as it is, has become a lifeline for him to have some interaction with other kids outside of school. It also tells him what day it is, what time it is, what the weather is here and in other cities, what homework he has due, what his schedule is that day in school.  It links him with us and family friends via text messages, family photo sharing and FaceTime.  I remind myself very belatedly that this phone is so much more than the world’s most irritating App (Talking Tom) and access to the charming “Hello Bitches” music video.  For him, it is a way to have some moderated independence.  It is beginning the steps to teach him how to use technology to support his needs, to use modern technology (timers, calculators, maps) to fill in those fuzzy areas his brain can’t reliably process – life lessons we know he needs to learn well.  I stumble through the conversation with “I don’t knows” and “we’ll sees,” confused myself now as to what would be the best outcome: to replace (we have insurance), to wait, or to nix the phone altogether.  My earlier relief at the thought of this being the end of our never-ending Phone Struggles is quickly dissipating.

And while I ponder this, after some quiet but deliberate swooshing of warm water from one end of the bath to the other, he eventually starts talking very quietly – in that tone I know is from somewhere deeper inside him.  I am alert. “Mummy people were asking about my phone.”  We are directly speaking now, not in language I need to decipher.  He says, looking at me from the corner of his eyes to see if I understand, “I don’t want to tell them.”  Ah.  Smart boy.  Slow Mummy.  Now I get it.  He doesn’t want to tell them how it broke, that he threw it because he couldn’t find his pass.  He feels ashamed, embarrassed, confused as to what to say.  He knows what he did isn’t “normal.”  I tell him it’s not their business.  “Just tell them you dropped it.”   As I tell him to lie I fear I am creating future problems.  I am in over my head here.  Yet another page missing from my parental guidebook.  I tell him it’s enough he has told us the the truth.  Then, when I am blow drying his hair, I stop and look into his eyes.  I tell him it won’t always be like this. He looks down, dejected.  I say we understand he can’t stop himself from doing silly things sometimes when he is frustrated.  But he will learn some day how to control his frustration so he won’t throw things.  It will get better.  I am not sure he believes that, or can picture that.  Not yet.  Certainly not today.

I intend to go into his room to discuss “upstairs brain” and “downstairs brain.”  To explain again that when the fight and flight part of his brain is in control, as it was when he realized he lost his VIP lunchroom pass, that he isn’t able to use the thinking part of his brain.  But he is already in his bed, contented for now with a CD player we borrowed from his brother’s room, since his iMusic lifeline is now severed.  He has adjusted the heavy fuzzy blanket, covered the end of the bed just so with another blanket,  wants all the lights off.  I know he will rock himself to sleep.  Sure, it’s only 5.30pm.  But it has after all been “the worst day ever.” I’d want to go to sleep early too.

Tomorrow, then.

We will face a whole new day all over again.  One phone down.  Without his “memory.”