Shining a Light on Our Loved One’s Interests When Parenting a Person with FASD

Blog Lights

By SB_FASD

When our son was little he would obsess over light switches. Once he was tall enough, he would ‘play’ with the light switches, turning lights on and off and on and off and on and off. Repeatedly, sometimes for several minutes. Fast. Slow. A hundred light flickers. We had one switch that had a dimmer on it. Same deal. Bright. Low. Bright. Low. On. Off. At times these light switches would get pounded if he was dysregulated. (His nursery had to put red stop signs by all the light switches because he did this there too.) When he was tall enough, if we weren’t vigilant, he’d climb up on tables or take a step ladder and redirect those ceiling spotlights that were able to be redirected and he’d try to redirect even those that are fixed. We had an alarming time period where he tried to remove the bulbs from the ceiling lights, experimenting to see if he could replace them with others. Some of our light switches are still broken.

We never did find the right kind of light for his room. Soft night lights would be turned off and rejected. We learned the hard way we couldn’t have a lamp with a bulb by his bed or he’d possibly take out the bulb, or the bulb would get broken. One time a lamp was knocked over and the bulb started to burn through the carpet. Christmas tree lights? Those were a special challenge. Once he discovered that little box with the buttons that lets you put those lights on a manic flashing setting, we were doomed for a few years. He noticed street lights, what kind, colour. It could cause major anxiety if a street light were left on during the day. If we drove to a new town, he’d remark on the different style of street lights.

I guess if I’m honest I can’t say lights traditionally have been a joyful subject around here.

And yet, here we are.

Once we started to better understand our son’s Foetal Alcohol Spectrum Disorder and learned more about the way his brain works, we got better at identifying what these behaviours were showing us. He is so much more aware of lighting than we are, he sees minor flickers. He doesn’t ‘block out’ the lighting, to him it’s paramount – so that cute little colour changing clock we had in his room was driving him bonkers if he’d wake up in the middle of the night. He wasn’t trying to wind us up by rejecting it. His senses are super tuned. When he falls asleep, he needs pitch black in the room. He has to be in control of these things.

So we started by getting him a couple great kiddie Sprida spotlights from Ikea since some of his light fixation paralleled his desire to perform, to create a ‘stage’. We spent a few years rigging up performance stages in our living room, in his bedroom, in the hallway, in our room. One of us would have to hold the lights while another was responsible for filming and controlling music. Sometimes I’d be all three parts and I’d join with the audience of teddies and dolls in cheering as well. It was fun but also always a little stressful – he had such a clear image of what he wanted to have happen, if I didn’t get it right, well, that didn’t always end well. When it worked, it was magic. We had such good times. Some days this would last hours. We went with it.

As he grew, this interest continued and morphed. We have written before about how during some really challenging times his performances were true highlights – when he won a school talent competition in his mainstream school.  When we followed his dreams and helped him organise a “Flashing Lights Tour” for his thirteenth birthday where he performed on stage in front of 50 family and friends – complete with stage lighting.

Through all this time we tried to bridge this interest into other things. We bought him a ‘Streetlights of the World” book. We had a magical trip to a London show, where he was invited in to see the sound and lighting booths. That was written up for and published by Official London Theatre’s website.

A couple of years ago it became obvious his little kiddie spotlights weren’t enough. We could never walk past the aisles were LED spotlights were stored. So, once he was able to be trusted with the plugs, we started a succession of disco lights, disco balls, flashing lights, strings of lights around his bed (with his own little box with buttons to make them flash). Some were welcomed. Some ended in tears. As things were inevitably broken, we never yelled, we shared his sense of sadness.

He became adept at googling and began watching instructional YouTube videos. We started hearing about his desire for a ‘moving head light’. These are amazing contraptions that can be programmed to spin, change colour, etc. Last Christmas, Father Christmas brought one, with some trepidation. We are still at a point in life where every electronic device we purchase gets an insurance policy. We have replaced many phones and tablets due to the reality that at times things get broken. But these lights don’t come with replacement insurance. There’s also a cost difference between a cheap LED light and a moving head light (although some are not overly expensive). We were aware the danger of this getting broken is high and we know what happens when a loved item gets broken. Once that new moving head light was in hand, instantly the requests started for a ‘DMX control board’. Again we were concerned, looking at the hundreds of little buttons and slides on those things, we knew the likelihood of frustration and possible breakage was high.

So it took another year before Father Christmas came on board and brought a DMX control board. A year, I might add, in which that moving head light was treated with kid gloves and handled with absolute respect, the lens protected at all times. He had earned this next step. I wrote about how touch and go it was on Christmas day, when we figured out we needed help in helping him programme this board. Fast forward a couple of weeks. With some intensive googling and YouTube watching by dad, the DMX control board is now working. The lights are up on a new light stand (another Xmas present, from an auntie and uncle).

Our guy has finally got what he was showing us he wanted for more than a decade. A fully adjustable and controllable bank of fun lights in his room.

Why does this matter? Why is it worth a blog post?

I was lying in bed thinking about these lights. And I allowed my mind to wander back to those early light flicking, oh-so-stressful days which I had kind of blocked/buried in my memory. We weren’t clued in then. We used to tell him off. We were undoubtedly escalating things when we should have been calming them. We didn’t really understand his sensory sensitivities. We weren’t receptive to allowing him ‘unusual’ lighting. As I was lying there thinking about this light stand and his deep satisfaction as he sits in his bed controlling these lights (in addition to the moving head light, he has an ultraviolet light and a couple of other LED stage lights on there), it occurred to me this isn’t a fleeting interest. This is the result of more than a decade of persistent interest that our son has consistently shown in something, despite our discouragement way too often. It’s an interest he has cultivated. An interest he has devoted hundreds of hours of research to. An interest that parallels with our family’s involvement in theatre. An interest that could become a way for him to contribute to society and the community in various ways in the future.

Just because it’s not ‘typical’ doesn’t mean we should shy away from it.

As parents guiding amazing young ones with FASD, we just don’t know sometimes where things are leading. We have to celebrate our children’s interests. This is especially important for those with FASD, because these interests can be a multi-sensory way into learning, growing, and laughing. They can help us together create some wonderful moments and can develop an important sense of self-esteem. This is especially important for those walking this world with FASD, when so much of life can be full of people telling them what they are doing is wrong and that their interests are not socially ‘acceptable’. Why, for example, is my desire to have one type of lighting any more valid than my son’s desire for variable lighting? I sat in a meeting just this week where one set of lights was flickering and this was affecting an autistic person in the room so the lights were rightly turned off. I have to say that I was distracted and tense in a room that was not set at a lighting level I was comfortable with – what a good reminder for me that was.

Head on my pillow in the semi-dark, I realised again while flitting across the years with the long view, the importance of tuning in and shining a light on our loved one’s interests, whatever they are. If we are open and creative, we as parents and caregivers can flip something that might seem to be a royal-pain-in-the-neck into true moments of joy and possibility. And everyone, everyone in the family needs to have those moments.

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For more insight: Lee Harvey-Heath, an adult with FASD, spoke about how these environmental issues can affect a young person with FASD in this video – starting at 4 minutes.

 

 

Teachers, It’s Not His Attitude, It’s His FASD

Blog PE

SB_FASD

“I don’t want to say it’s his attitude but….”

Here we were. Parents’ evening, Year 11. We’ve come so far in the many years of school. We’ve gone from parenting a young child whose needs we did not understand at the time, fighting back against those nursery teachers who thought he didn’t know any words and that first educational psychologist who told us he was ‘incapable of learning.’ We’ve made it through the initial diagnoses of ADHD (where the retiring teacher told us he was the first child she’d ever had with ADHD in her 30 years of teaching) and past the autism diagnosis that turned out to be incorrect (where one of the country’s leading children’s hospitals somehow missed the fact he has 100% of the facial features identified with Foetal Alcohol Syndrome). We finally got the FASD diagnosis that then took a while to sink in and to comprehend. After that, we started the phase of arriving at teachers’ meetings loaded with binders of information having highlighted relevant bits of his cognitive profile for anyone educating him (a task made harder once he hit secondary school with the multiple teachers and more fragmented home/school communication). There were superstars in his story but for the most part most teachers didn’t get it. Then we had the very welcome switch to a specialist school three years ago, with a whole new playing field that has changed so much for the better.

And yet, even here, at the last parents’ evening of his school experience before he heads to an inclusive learning programme at a sixth form college, here we were sitting across from a young teacher who simply was not listening, who had us pegged as parents who were making excuses for a teen who “knows what he needs to do” to get changed and ready for PE. She rattled on, convinced of her belief that he “just needs to join in and he’ll be fine.”

She was speaking a mile a minute in a noisy room, oblivious to the fact that our son (who was wearing headphones to dull the background noise) was not able to follow her rapid chatter. Worse, she kept talking over us, over me, as I was trying to explain. I felt that old familiar surge of my own blood pressure escalating. I simply could not believe she would not slow down and listen. It didn’t help she was talking so fast that she called our son the wrong name 5-6 times. We weren’t even sure why we were having this conversation. He had been doing sensory PE lessons that were working, but which have been removed without prior consultation.

Our son has never had positive experiences with Physical Education (PE).  Here’s why:

  • Getting changed in a crowded room in a short period of time requires a level of executive functioning that is challenging for him.
  • He has trouble organising his backpack.
  • He still cannot easily button buttons due to the way his hand formed. So, his school uniform and PE polo shirts are hard to manoeuvre.
  • He has sensory issues with changing in a cold room.
  • He has sensory issues with the noise.
  • He cannot estimate how much time he has to change and is easily distracted.
  • He is not comfortable in a male changing room as he is gender non-conforming.
  • School have arranged access to a special ‘comfort room’ but apparently leave it up to him to go get the key and they leave it as an option.
  • He has at times put his PE shirt over his regular shirt but this young PE teacher lectured him in front of us about how smelly teen bodies can be.
  • He gets confused with tidying up the clothes and is anxious about losing things.
  • PE is towards the end of the day when he is stressing about ensuring his phone has charge so he can have something to focus on in the taxi ride home (the teacher has arranged for him to charge it in their office, so that’s a positive.)

All of that anxiety and stress happens even before he even sets foot in the gym.  Once there:

  • PE classes tend to be based solely on shouted instructions from the teacher. Our guy has very limited receptive language skills. He gets lost, confused.
  • Many team sports require a level of advanced thinking – if player x goes there, I should go here. This sort of thinking is hard for our guy, especially when under pressure – and especially under social pressure to want to help his team (his friends) win.
  • The gym tends to be loud and echoing. This disturbs him.
  • Even with sports like trampolining that he excels at, there are often long gaps to wait until it’s his turn.
  • Though he has the medical okay for it, he is still hesitant to do some activities because of his hand operation (this teacher didn’t know about the tendon surgery).
  • Also due to his FASD, he has fused vertebrae and fused ribs that mean he can’t do any contact sports.
  • He doesn’t really understand (nor do we) why he can’t do sensory PE any more.
  • She thinks it’s great he’s “so bendy” but doesn’t understand that is partly due to hypermobility and doesn’t recognise he also has some very tight muscles that can make some things hard (he wore special shoes and had Occupational Therapy for years for this).
  • And then when the PE class ends, it’s time to organise himself to get back (supposedly) into school uniform, though he often doesn’t change again as it’s the end of the school day. Does it really matter?

“He knows he can ask” if he has any trouble, she said. What exactly can he ask about all of the above? And if she won’t listen to us, what chance does he have? His relationship with PE is complicated.

Can we not just assume there are reasons why it’s hard for him to engage in PE?

Can we not just have someone gently guide him to the ‘comfort room’ without making him go for the key?

“It’s important he’s on time so he doesn’t miss the warm-ups.” Well, no kidding. Can he leave the prior class a little early to have some extra time to get himself sorted?

Most of all, why can’t he do the sensory PE that was working? (It was integral as the school has been cutting back on his access to sensory supports, one of the main strengths of the school prior to these changes.)

Sigh.

I have gone on at length here because it’s one small example of how some throwaway comments from a distracted teacher can send parental stress through the roof, let alone whatever impact it was having on our very tired son by that point in the parents’ evening.

This constant push from school for independence is hurting him. Interdependence is the goal.

This sort of conversation happens time and time and time again throughout the educational journey of a student with FASD. It’s so unnecessary. And if I found myself defensive and feeling unheard, what about all those who are less resilient, who are having their parenting questioned right and left by professionals who don’t get FASD at all. How is it the professionals don’t understand the impact of this constant assumption the child just needs to make an effort to focus a bit more, try a bit harder, do what he knows how to do. We were so sad reading his school report. These phrases have crept back in.

Some do ‘get it.’ The ICT teacher (who had been his teacher previously), told us how well he’s doing, how he’s caught up with others even though he entered her class later in the year (this was the first we’d been told about this). She’s been using his enthusiasm for music and technology to get him to expand his knowledge and to learn other computer programmes. The English teacher has decreased pressure on national exams and allows him different options each day for how to participate, depending on how he’s doing. It’s just sad that even in a specialist setting, even with a solid EHCP and diagnoses in place, even then the type of support he receives can be so variable.

With FASD, what a child knows and masters one day may be inaccessible or harder the next. This is not wilful behaviour. It’s the result of compromised brain wiring.

Sorry, but this has nothing – zero, zilch, nada – to do with ‘attitude.’  At least not his.

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Some links to education resources are available here.

The Slime Whisperer

BLog Slime Whisperer who has #FASDBy SB_FASD

I remember one summer we had signed our son up for tennis. He was tiny but remarkably good at it. We had arrived a bit early before the end of one session. Watching through the fence, my heart sank into my stomach. We saw our son wandering around the edge of the court, head down, looking for something, anything – alone. None of the instructors seemed to notice. This was not ‘fun’. This was not what we had hoped for when we enrolled him. He said it was ‘boring’. This was long before we understood that was his go-to phrase for situations when he cannot access whatever it is that is going on, when he doesn’t understand what he should be doing and when the cognitive challenges are too much. We took him out of that programme, one of a whole string of summer programmes that didn’t quite fit.

Flash forward to last weekend. We were at the Brain Base, an FASD-specific summer event (OK, one I organised with an awesome team of people) – a full on multi-sensory programme designed for those with FASD. It was time for the slime lab – an idea our son inspired and led last year at the first ever of these “Brain Bases”. But this time something was holding him back. I couldn’t figure out what. He asked me if I would please tell everyone the instructions. While I did that, I saw out of the corner of my eye that he had taken himself off to the side. I felt that heart-sinking feeling again. Even here, surrounded by people who ‘get’ FASD, he was separating himself. The familiar sadness began eating at me even as I was trying to lead this session.

And then I looked closer. Listened harder. Other kids were having trouble with the mixture. He was making his work. The pressures as event organiser/mum were weighing down hard on me: I was fearing a potential disaster if no kids were able to bring home slime as promised and I was worried my son might be on edge and possibly spiralling. I was not entirely sure how I would handle that combination.

I went over to him quietly. He blurted out, “You don’t have the water!” I explained we had pre-mixed the water with borax* (the fairy dust that makes this slime recipe possible). “There is water in there,” I said, over-riding him, not listening as I too often don’t. He was having trouble telling me. He was getting a little upset. “You need the water!” Then I looked more closely at what he was doing. He had been experimenting off on the side. Hands on. He had added some extra warm water to his mixture and was making it work. He had been testing it out, away from the clamour, before telling me.

I realised my mistake. When we were planning and getting the supplies together for the slime session I had verbally told my son what supplies we had and asked if it was everything we needed. It wasn’t until he was there and could see the supplies and was using the supplies that he could identify very quickly what was missing – extra bottles of non-boraxed water. If I had shown him these supplies sooner and not relied on verbal reasoning only, we would have avoided the glitch.

Now that we understood the problem and why everyone only had at that point a gooey mess, we adults quickly supplied extra warm water on all the tables and then I watched our son.

This, this was his moment.

He was the Slime Whisperer. The Slime Doctor. He was going around the tables, helping people get their slime to the right consistency. He had parents, carers and kids lining up to get his help. People were calling out his name. It was chaotic but he stayed cool. He wasn’t gregarious or arrogant, he was determined. His head was down, all focus on the slime and what each mixture needed. It was instinctive and quick. He has, after all, been perfecting this over many years. He knew what I did not.

My heart stopped its descent into my stomach. It went right back to its proper place and I was full of awe. In that moment, the concerned organiser disappeared and the proud mum took over. This journey had taken a long time from a floundering, ostracised kid no one noticed to young leader at the centre of something magic. This moment had been a long time coming.

And of course, it’s not just about slime.

It’s about understanding. I have written previously about how our son used to get into all of the shampoos and perfumes, he’d mix things and we’d get angry. Finally, we gave him his own ‘slime lab’ with items he could use and which we would re-stock from a pound shop. He has spent days, weeks, years getting this right. He has finally in a very physical way learned how to balance the different mixtures. He has learned by doing, finding his own creative approach to a scientific challenge. His natural determination and ability to fixate has worked to his advantage here. It reminds me of a piece by R.J. Formanek, Getting Burned with FASD, where he explains how as a young person with FASD he literally had to experience something before he understood it.

No, it’s not just about slime. It’s also about finding tools for success. We have over time learned that our son needs this sort of input to help him calm. He now will bring some homemade slime when we go out. Or he also likes various putty – which is less messy and a deeper kind of input. Sometimes it’s just Blu-Tak. We had the best car journeys we have ever had getting to and from this Brain Base (four-plus hours each way), because he had a bag full of tools like this that met his sensory needs, things he chose to help him. That’s the key – these were things he wanted, not what I thought he should have. (And we listened to him, didn’t force him to go into the convenience areas or to eat, we let him ‘be’ in the ways he needed to be.)

It’s also about normalising what too often are seen as unusual behaviours. So, yes, a child making a huge mess with shampoos and powders and washing up liquid can be seen as ‘not listening’ and ‘stubborn’ – some might even call it ‘naughty’.  But when we look harder at what they are showing us in those moments we can see the need is for greater sensory input, their system is screaming out for tactile and sometimes deep sensory input.

This is a ‘thing’ – if you know a child searching like this then get an assessment from an occupational therapist trained in sensory integration issues. They can give you what is called a ‘sensory diet.’ Our son has always had a need for deep proprioceptive input – the deep muscle sensations you get from jumping or bouncing or deep massages. It helps his system regulate and it ‘grounds’ him. Pushing the wall, wheelbarrow races, pillow sandwiches, burrito blankets, these are all techniques that help him.

Some of my favourite moments of this past weekend were when adults around him started to use the putty too. Sitting in a noisy restaurant is hard for our guy, especially after a long day. I have a photo of him with one of the leaders of the Brain Base, they were both playing with putty while watching a little YouTube clip of something or other. My mother would have been appalled as this is not typical restaurant etiquette – yes, I still have those thoughts rise up in me. But this wonderful adult was making it all right. We have another photo from the car ride home, where he and his auntie are both playing with putty in the car, discussing its feel with the seriousness it deserves. This whole weekend was about getting the adults to join in with their little ones, normalising the strategies, practicing them side-by-side with their kids. It works!

And in our little family unit, we did not had one meltdown or even seriously wobbly moment the entire trip. In my head at this point the proper response would be for the clouds to open with a hallelujah moment. It’s been a long, long decade-plus string of holidays that did not go so smoothly. In this we are not alone. I have been reading in support groups how people are struggling this summer to try to find ways for their families to have time away without the world crashing down. I remember those days. We have been there. Oh yes, we have.

So no, this post isn’t about slime. It’s about listening to our young ones, being led by them and their interests. It’s about finding that thing, whatever it is, that they enjoy (even if it is not something we enjoy) and finding ways to build on that to help them find some self-esteem, maybe even help them develop leadership skills, in the process helping them to know they can help others. It’s about finding tools that work to break down their anxieties and isolation. And yes, it’s about building those spaces if they don’t exist.

If it had been up to me the slime lab would have been a sticky, gooey washout. Instead, it got the highest rating of all the sessions at the Brain Base. He made that happen. I wish you could have seen the smile when I told him that.
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*Please note: Borax needs to be used with parental supervision. It can be harmful, including if it comes into direct contact with skin or is ingested. This session used only a pre-diluted weak solution and all involved signed waivers. Please read up and be safe.

Some Days I Want to Bury My Head Under My Pillow. And I Do.

Blog_BuryMyHeadBy SB_FASD

This morning I literally curled up in my bed, trying to ignore the dread creeping up and over me. There are times like these when the world catches up with me and forces me to be still, to ignore my in-box and absorb all that is happening. I know enough now to know that I simply cannot ignore that feeling. I have to give it time, to honour it and explore it. It’s part of my own resiliency. It’s critical if not always convenient.

Though our son has been doing better, he is not free from danger. He remains vulnerable. Head buried under my pillow, I take stock. I become aware of how fear literally grips my insides. I need to calm it. I need to centre. (A recent camera down my throat proved that silently these worries have indeed been drilling into me deeply when I was not paying enough attention. The pills, they say, will repair the as yet minor damage. I wonder.)

For now, I must digest the fact that yes, we have just had three incidents in two days involving lighters. The knowledge sinks into the pit of my stomach: three years later, lighters are back amongst us again reminding me of some of the darkest days we have had around here. I tell myself not to panic, now that he’s older it’s safer. Am I kidding myself? How safe can anyone be with a lighter hidden under their bedroom pillow? I discovered one there, moments before I officially declared myself in this funk.

I start ticking things off in my head. I guess we are back now to the days of checking all bags and searching the likely hiding spots every night. Back now to warning everyone around us to make lighters inaccessible. Back now to feeling not good enough, not vigilant enough.

This morning while he was in the bath he was asking about shows that he used watch when he was 3 or 4 years old – Sesame Street, High Five, Cartoonito Karaoke. He was clearly viewing them on YouTube last night. Why now?

I feel selfish. I took a night out in London to celebrate a friend’s 50th.  This friend, one of my best and longest friends, has had a birthday party every year since we moved here 13 years ago. We have only managed to get to one other of these parties. So often when parenting a child with FASD, we put our social lives on hold. But this time it was important to me to be there. He had a sleep over. Though I doubt this is the root of the issues, I know it didn’t help and so I do the obligatory beating myself up – wondering if my night out somehow has been a part of the ‘why’ of this?

There are other more likely reasons. He was at the doctor this morning for some nasty phlegm and coughing. The doctors say this is due to post-nasal drip not an infection. His sensory system cannot handle anything out of the norm, let alone this.

His long hair (now nearly down to his waist) has been causing angst. It gets knotted and all the detangling conditioner and sprays and special brushes in the world cannot make this easy for a child with sensory issues.

And then there are the ‘normal’ year end insecurities. His school has been moving all the kids up to the next year now before summer break. It makes it easier in the new school year but it fuels anxieties in the short-term. He keeps telling us he is not ready for Year 11, he’s not old enough to be in Year 11. He wants to be in Year 10. We are not sure exactly why.

His anxieties have been so heightened that a couple of weeks ago school took him off timetable altogether. He ‘was distressed’ at school (we are still not sure what they meant by that). There had been some disagreement between him and his classmates. Something to do with relationships and him not wanting to be in that game at all. Some comments about his hair and being misidentified by gender. (Tricky waters, these.) He also had refused to go to a school ball and we are not sure why. Everything has been making him anxious.

Sometimes I wish I could put a surveillance wire on him so I could hear every conversation people are having with him, so I could know where some of this is coming from. He is not able to tell us. Due to his FASD, he cannot connect dots on his own. We have to be detectives, with only half-formed clues and our bedraggled intuition to guide us.

For a few of his happiest days in a while, he was allowed to go to a special part of the school that is a healing space. They even have school dogs there. There’s a lovely specially trained teacher there who worked with him using sensory toys. It always helps him to visit “the Hub,” reminding me how important 1:1 attention is for him. Back now in the main class, he’s struggling again. I become “that parent” and dash off another email to school, trying to keep our lonely guy on their radar even as I am aware they have so much to juggle already with the end of year chaos.

He’s barreling toward 16, only one year away now. The services and the interactions are changing around him, forcing him to ‘mature’ in a way he is not yet able to do. It scares me.

I have been thinking a lot lately about being elderly parents. We are not wealthy. We do better than most but still we have trouble making ends meet. We live in a society that is increasingly ignoring the needs of those with disabilities. Will our youngest son really be okay when we are no longer here to help?

I wanted to burrow my head further under the covers rather than sit up and face this particular day head on. So I do. I give myself permission to step off my own timetable.

There is another reason for these deep thoughts, the day literally started off with a jolt. This morning at 5.30 am our elderly neighbour’s alarm went off. Somehow, they didn’t hear it for the half hour it took for us all to try to figure out if something was wrong. Hard of hearing, they slept peacefully and didn’t hear the alarm the rest of the road did.

I guess I am afraid that I also might not hear the alarm. I fear missing the signals.

Sometimes, I don’t know what to do first, where to focus. We are always trying to change things on big levels (my husband just became a town councillor, on top of everything else). Our lives are multi-faceted and hectic and this puts us perhaps a bit over the line toward disorganised. Sometimes I fall into a kind of tunnel vision just to keep myself on track. I am sure others think this is me being aloof, when really it’s just a survival skill. I try so hard not to let the balls I am juggling fall that sometimes I don’t see what (or who) is right in front of me. Even our kids. Seeing that lighter under that pillow made my blood run cold. What else haven’t I seen?

To those who know us, who know me, please, if it ever seems we are not hearing the alarm in our own home, please bang hard on the door to get past whatever veneer might seem designed to keep you out. Please know that it’s not you we are trying to keep out. It’s the fear, the whatever’s-around-the-corner that we are trying to keep at bay.

Overall, I believe we’re basically ok, mostly under control. Having thought it through and given myself space to calm, I think this all is just an end-of-school-year, nearly-birthday-time blip. He has an awareness and coping strategies that he did not have three years ago.

The thought actually snuck in that maybe there’s a positive spin. Maybe things have become so good lately that we haven’t realised just how tame this year’s last-weeks-of-school tension is compared to what some end-of-the-school-years have been like. Maybe we’ve forgotten what ‘grim’ really looks and feels like?

On the other hand, I dread becoming so inured to it all that I wake up one day when the oh-so-critical transition into adulthood crashes around me, realising I slept through the alarm bells. That I wasted the time available to us. That’s the big fear. I know too many kids who have been crushed under the pressures of these late teenage years. Some are lost to us forever. Some have literally died. So please, someone knock really hard on the door and wake us up if somehow you think we are missing the signals.

Ten years from now, I want to look back on this time with relief and say, oh woman, no worries. You were on top of it. And look! They are in their mid-twenties and you all made it through.

Won’t that be a great day?
 

Seeing What is Not Seen in the SEND Debate: FASD

Blog SENDMarch

By SB_FASD

On 30 May children and families took to the streets in cities across England to fight for more funding for special educational needs and disabilities (SEND). Petitions were delivered to centres of decision-making. Twitter lit up with the hashtag #SENDNationalCrisis.

In a powerful piece in The Sun, Chair of the Select Committee on Education in the House of Commons Rob Halfon, MP wrote that: “No fewer than 78 per cent of permanent exclusions are issued to those with special educational needs, with 4,000 special needs students being excluded every week.” In another piece it was stated that “According to the NEU teaching union, special needs provision in England has lost out on £1.2 billion since 2015.” It’s a crisis all right.

The reality behind these figures was laid bare in a tweet by @Dyspraxialife: “It’s easy to show compassion for a child who is struggling. They have innocence, purity, vulnerability and the cute-factor. I wonder how many homeless people who get walked past every single day were once struggling children. Instead of love, they now get spat at and demonized.” This isn’t about ‘others’ – it’s about the health of our communities, the kind of society we hope to be, the smart use of limited resources. It’s about political will and choices.

So why do I feel like the air has been knocked out of me?

I see what is not seen, the “pink elephant” in the room as some advocates have started to call it: FASD. Foetal Alcohol Spectrum Disorders.

The best study to date in the UK says more than 6% may be affected by FASD, organic brain damage resulting from exposure to alcohol in the womb. FASD has been called a ‘hidden epidemic’. Statistically it affects more people than autism.

As I scroll through videos from the marches, I hear clusters of diagnoses and symptoms that match a pattern not uncommon among those with FASD: ADHD, ASD, OCD, hypermobility, dyspraxia, etc. I hear parents discussing exclusions from schools due to meltdowns that schools cannot handle.

I fear there are many missing the vital insight needed to put in place appropriate supports for their loved one, a diagnosis of FASD. FASD is a full body diagnosis, more than 400 conditions co-occur. Alternative strategies are needed at home and in school. Kids with FASD are often punished and excluded for behaviours that result from cognitive processing and sensory issues that contribute to a lack of impulse control, an inability to consistently remember what has previously been understood or to link cause and effect. Transitions are hard. The dysmaturity involved means everyone around the young person needs to adapt expectations and change the environment to give that person their best chance to succeed. Without lifelong support, the statistics for people with FASD are truly grim. Homelessness is just one of the possible outcomes.

There is great stigma at play here, fueled by a devastating lack of understanding. To even raise FASD in many parent-advocate or professional forums can bring a barrage of negatives based on the old-school shaming-blaming ethos. But we can frame the discussions differently. As outlined by the late Pip Williams, founder of the UK and EU Birth Mothers Network-FASD, the reasons why women drink in pregnancy are complex. Many pregnancies are unplanned. Most women don’t have the information about the risks of alcohol in pregnancy. Very often pregnant women are not drinking alone. For those who need help quitting, support services are severely lacking.

To help confront this stigma, my husband, son and I marched yesterday carrying huge brightly coloured signs made by the wonderful young people in the E. Herts and Area FASD Club that simply said “FASD” on them, wearing hats that said, “Ask me about FASD.”

One person who did ask was a recently retired Special Educational Needs Coordinator who had worked in two different schools. She didn’t know what FASD was. As she thought more about it, she said she had one child once who had Foetal Alcohol Syndrome (this refers to the 1/10 of those on the FASD spectrum who have certain facial features). A career SENCO would have had many, many students with FASD under her charge. Her question shows the vital importance of increased training on FASD at the frontline of SEND services. People don’t know what they don’t know.

We lasted at the march as long as we could. But there are no pictures of our signs out there in the news reports. To be fair, we left early. Our son with FASD was overwhelmed by the sensory input – the shouting, the whistles, the heat, the stop and go. Cognitively he was overwhelmed, unfamiliar with the march route, his anxieties soared. We didn’t even make it to the centre of the town, but we peeled off from the others, called it a success and came home. That’s the reality of life in our family. And the very many other families who were unable to be out there yesterday.

The tragedy of this absence from the debate is what has knocked the wind out of me. We know that early diagnosis and appropriate support create happier families and brighter futures for those with FASD.

And yet, even on a day when the streets are full of those with special educational needs and disabilities, our kids are still not part of the picture.

But I won’t stay down for long. I know change is coming. In England next year there will be a new NICE Quality Standard on FASD. Soon the health care system will be held accountable to improvements in services for those with FASD. The educational field too will have to wake up to FASD.

There will be no lasting solution to this SEND crisis unless and until FASD is a part of the picture.

Where’s Our Empathy for Those with FASD?

Blog Empathy

By SB_FASD

Sometimes I despair at the lack of empathy in this world. We seem to have a collective inability to imagine ourselves in someone else’s shoes. This week I read about a school that think’s it’s okay to put a vest on a child in the playground so everyone knows he has autism. A five-year old autistic boy had to leave a showing of Dumbo because he got excited and jumped when Dumbo flew. In that case, another mum made a fuss and reportedly said she didn’t “particularly care” that the child is autistic and said he should be kept at home if he can’t sit still. Never mind the whole point of Dumbo is accepting those who are different than ‘the norm.’

Other disabilities aren’t even on society’s radar. I am mum to a child with a Foetal Alcohol Spectrum Disorder (FASD). Someone exposed to alcohol in the womb can have a range of brain-based challenges. The condition is little-known, isolating and affects each individual, each family differently.

Parents vent in FASD support groups about how their kids are always grumpy and never listen. They open up about destruction, rudeness, out of control scenes. Some days these groups are full of parents and carers describing in many different ways how, from their perspective, the person with FASD takes away the joy in their lives. It makes me sad. I imagine how these posts must impact those with FASD who read them.

I empathise with other parents and carers even if I don’t always agree with how they phrase things. We all need to let our hair down and scream sometimes. It’s important to do it where others understand why you feel the way you do. I have even felt this way at times myself, before I understood my son lives with underlying organic brain damage that happened to him before he took his first breath.

I remember one day, looking down at him when he was mid-tantrum. A child on the stairs, screaming, throwing, spitting. In my frustration I shouted, “Why are you doing this?” (I thought he was doing this to me.) He shouted back at me, “I don’t know Mummy!” That moment hung there, frozen in time for me forever. I saw deep into his eyes, where his utter distress was laid bare. He’d probably said this same thing a thousand times before, but that day, that one day I stopped and I saw. I listened. I accepted this was his truth.

None of us knew at the time that this was not a ‘tantrum’ but a ‘meltdown.’ His brain could not handle the input it was receiving. There’s a meme, “Kids with FASD are trying.” It says, “How you read that statement matters.” I have come to understand just how hard my little one tries. I know now, as another meme says, that he’s not giving me a hard time, he’s having a hard time.

But understanding doesn’t automatically bring empathy.

To tap into empathy, we have to try to think of situations we have experienced that might be similar, to remember those moments when we felt out of control, overwhelmed, confused.

Every single one of us has at some time or other felt that type of distress, anxiety and fear – maybe made worse by being hungry or tired or sore in some part of our body or soul. We probably were on a short fuse and most certainly not at our finest. How did we want others around us to act?

One time I was travelling in Japan. I ended up with the wrong ticket for a train. I got stuck at a barrier gate. No one who worked there spoke English. I don’t know Japanese. I couldn’t read the signs. I couldn’t see where I should go. I wasn’t sure when the next train was. I had become separated from my group. One other person who was going to the same meeting, someone much senior to me, stopped on the other side of the barrier and simply waited there for me. We hadn’t been travelling together. He was likely to miss the train. But he saw my distress. He just waited. I cannot tell you how his presence helped me that day. I think of it often now when I see my son becoming dysregulated, when the world overwhelms him and he starts to spiral. I try to stand there for him, with him, even if I can’t always fix the moment – just like that wonderful man did that day for me somewhere between Tokyo and Hiroshima. I wait for him.

We see shocking news articles about the lack of empathy toward autistic children and those with other conditions. And we rightly demand better treatment. But when it comes to FASD, despite the fact it affects more people than autism, those stories – let alone empathy – rarely exist.

Stigma is crippling progress and denying those with FASD their rights. Too many doctors consider an FASD diagnosis ‘a label’ and discourage parents from pursuing the needed assessments. Too many social workers fail to note or tell foster carers or potential adoptive parents about possible exposure to alcohol in utero because they think this somehow taints a child. Too many teachers don’t support assessments and Education, Health and Care Plans because they think the little one is ‘fine’ because he or she somehow stays in the chair all day, meanwhile falling further and further behind. Professionals time and time again insist the problem is just ‘bad parenting’.

Such shame, blame and denial of services for FASD are about as far from empathy as you can get.

My own empathy has grown by listening, truly listening, to the experiences of adults with FASD. They give voice to those thoughts, feelings and frustrations that the younger ones cannot yet put into words. They highlight for us the creativity, persistence, determination and unique kaleidoscope of abilities and strengths that that people with FASD possess and can build upon, once their basic needs are understood and supported. They help us see FASD through their eyes, as one leading voice in the UK, Lee Harvey-Heath called his awareness raising effort.

Every person deserves to know that there is a place for them in our society, that we each bring gifts, that we each make this world that much better because we are a part of it.

We can tap into our own empathy and model how we want the world to be, today.

 

 

A Bug, BRAT and Hope

 

Blog Virus[We’ll post an audio recording of this soon, apologies for the delay for those who prefer that format.]

By SB_FASD

Curled up, knees to his chest, our guy has been seeking relief from a sore tummy. There’s nothing more heart wrenching as a parent than knowing your little one feels unwell and you can’t really do anything to help. Time must run its course.

Viruses are inclusive. They hit little ones no matter what their cognitive processing abilities. But there are some special challenges they bring to homes like ours.

He is so thin. We have to watch closely to ensure he doesn’t become dehydrated. It’s hard to know just what he is experiencing. For anyone with sensory challenges, a virus like this is a nightmare. Linking cause and effect is not easy for those with FASD. So, it’s hard for our guy to make sense of this onslaught his body is facing. He has a milk protein allergy and he has learned over years that food can affect his digestive system. He is asking me what are foods that he ate that might have done this to him. “It’s not what you ate this time, it’s a bug.”  A pause. Oh, wait, I have to watch what I say. I think fast as I see him trying to wrap his head around that. “When I say it’s a ‘bug’ I don’t mean it’s really a bug, that’s a thing people say when they mean a ‘virus’.” People with FASD are literal thinkers.

We’ve had days of this now. We are being given updates and descriptions of the outcomes. He is perseverating on this illness and counting the explosive results. To be fair, I don’t blame him. It’s been quite spectacular.

He came to me a day or so into it all, with his phone in hand. He had researched and said he needed the B.R.A.T. diet (bananas, rice, applesauce and toast). He was asking us to buy some applesauce.

I stopped in my tracks.

I let that sink in.

Our son, now 14, who has been feeling really horrible used technology and found an appropriate strategy to deal with his symptoms. The B.R.A.T. diet is not something we discuss around here. He found his way to this on his own.

That is HUGE. It’s such an encouraging sign. (Even if he perhaps predictably rejected the applesauce after one bite.)

He has been patient. Lying still. Going up and down stairs hurts his tummy. He texts me what he needs and with his updates on the toilet situation. I find this incredibly encouraging.

People have different views on allowing children to use technology. I am willing to admit we are liberal parents when it comes to this question. But we are doing this consciously and not out of parental laziness or laxness, as some might think.

We believe our son’s future success will depend heavily on his use of technology.

This illness has shown us a glimpse of how that is true.

It’s not just that he found an answer on the internet. But he considered much input, sifted through what Google showed him and he found the right answer – the B.R.A.T. diet (or at least what used to be considered the right answer, I know the advice is changing,). Most importantly, he has been using technology to help us help him.

A second example of hope in the midst of a possibly really hard time – he asked for a bath. That doesn’t sound spectacular. But I had thought having a bath just then was counterintuitive. He wasn’t feeling well. We had agreed he’d stay home. He didn’t need a bath for school. I admit it, I was a bit exasperated with the request. I help him with washing hair, etc. and I hadn’t planned on him needing one this particular morning. I was trying to work.

He persisted. I relented. Then, when he was in the bath he said quietly, “This helps my tummy Mummy. When my tummy is in the hot water it feels better.”

Oh my goodness. I felt like angels were singing. I was so excited that he had thought this all out. He remembered the way he felt the day before when bathing. He was trying to think of what might make him feel better today. He pushed for a bath even in the face of my discouragement. Though a bit late, he eventually told me why he had wanted the bath. And again, he was right. He had chosen the right strategy. He trusted I would eventually listen instead of giving up on his idea and retreating.

Again, he was ahead of me in figuring out what he needed. He was problem solving for himself. Appropriately. These moments are so important and so encouraging.

A third example…

We decided to call 111 (an out-of-hours medical line here in England). He recently started taking some medicine designed to help bladder issues and we just weren’t sure if some of these recent problems might be side effects of the new medicine. They asked us to bring him in on a Saturday morning. Our son was not especially feeling well, walking down stairs he had to stop. In prior years we may well have not been able to get him out of the house for this, it might have led to a meltdown. He asked exactly where we were going. We explained. We gave him advance notice. Some reminders as time was getting closer to leaving the house. Before we left he grabbed a wad of Blu Tak. (For those who don’t know it, it’s like putty, it’s used for hanging things on walls.) He didn’t say anything, just picked it up. I commented, “That’s a really good idea to bring that to help you. Well done!” He smiled a small smile. Having something like that to squeeze helps him to stay calm. It was just a simple thing. He didn’t make any big deal about it. He was just naturally implementing a self-regulating strategy at a time of potential stress.

It’s hard when our guy gets ill. His body doesn’t handle sensations in the same way as my own. I had actually said to my husband, “For all we know, he could be having an appendix attack, we just don’t know what his pain threshold is at the moment.” The words our son uses to describe how he is feeling are different than words I might use. We have to listen very hard and we have to be very patient to ensure he feels ‘heard’ and feels encouraged to continue to try to explain to us what he is experiencing. It is too easy in those moments of stress to talk over him or to assume we know what he is trying to say. The whole conversation has to go slowly.

We encountered two doctors this weekend who were both good in dealing with someone with a neurodevelopmental disorder. Once on the phone – the out-of-hours doctor who kindly sent us to a quiet clinic rather than the busy hospital A&E. And then the doctor who saw him in the clinic, who was very reassuring.

Unbeknownst to our son, I had assumed he was going to end up with an IV in A&E.

But here is the final, fourth oh-so-encouraging thing that happened this time. Our son has listened to us and he has been drinking tiny amounts. He was not dehydrated. We did not need to go to the hospital. What a huge relief. We have been telling our son how important it is to drink. When he rejected the prescribed medicine once we were at home (and I really don’t blame him, it is foul-tasting), he then asked me about ice lollies. I said ice lollies are good since they melt and are liquid. He asked about sorbet, does that count? And I said it’s not the same. It’s still good for him to have, but it’s not as good as liquid.

So, do you know what? Our son who was having trouble moving around, got down onto all fours and started searching in one of the cupboards. Again, I felt my own frustration rise. “What are you looking for? Can I help?” No answer. My consternation went up a notch. But then, there he was. He had found our silicon ice lolly molds, proceeded to fill two with Lucozade and asked me to put them in the freezer for him for later. I cannot tell you how very, incredibly proud I was at that moment. Again, he had gone to a place I had not in my own head. He remembered the doctor had said Lucozade (a sports drink) is okay too. He came up with a strategy to help himself. And he was right. Frozen Lucozade ice lollies are a great solution.

If you don’t know the worries about the future that come with being a parent of a child with additional needs, maybe these little moments won’t seem like a big deal. The biggest fear I have is how he will fare as he becomes an adult. Will he be able to look after himself? Most importantly, will he be able to identify and be able explain to others when he needs help?

As I lay there last night trying to fall asleep, I was thinking over all of this, replaying it in my mind. I disentangled my own tiredness with the other emotions. A strange bit of elation was tugging at my thoughts. I had a little light bulb moment when I realised I was filled with love and pride over how our son is learning.

That feeling I was having trouble identifying? It was hope.

Who knew a nasty intestinal virus that has me bleaching every surface would leave me feeling so happy?

A Dream to Help Me Cope With Anything

Blog_IHaveADream


By SB_FASD

We went out the other night to a relaxed screening of “Mamma Mia 2: Here We Go Again”. It was in a little arts centre in our town. The evening was co-sponsored by Guideposts, a regional organisation that works toward “a society where all people are valued and have equality of opportunity.”

Our 14-year old met a friend there from our local “FASD Club” (this is what the kids call their get-togethers while we parents drink coffee and chat in the local support group that we started after our son’s diagnosis). She also goes to his specialist school. My husband and I enjoyed the chance to spend a bit of time talking with her mum and some good friends who help run the arts centre.

We were welcomed as we entered by another friend of the family, a young autistic adult who was the most relaxed we have ever seen him. He introduced us to one of his friends, an older adult with additional needs.

As the sing-a-long show progressed, some of the young people got up and danced. Our son and his friend chowed their way through a cup full of sweets, popcorn and chicken and chips from a local shop. They were laughing and giggling, paying half-attention to the movie and the other half to each other. It was sweet.

I loved one of the songs:

“I have a dream, a song to sing
To help me cope with anything
If you see the wonder of a fairy tale
You can take the future even if you fail…”

“I have a dream, a fantasy
To help me through reality
And my destination makes it worth the while
Pushing through the darkness still another mile”

At 8:00 our son kind of suddenly showed me his phone and said he was tired, that he wanted to go home. To be fair, he had been in bed before we went out at 6:30 (he often goes to bed early, I think because he uses up so much mental energy in a day). Part of the negotiation in agreeing to go out was that if he told us he needed to go home, we would.

We did.

Even though the movie was just hitting the best parts, even though my husband and I both were enjoying the social aspect of being out among friends, we left. We congratulated our son on telling us he was ready to leave. We didn’t feel guilty, we were for once in an environment where others understood that we needed to head out. No questions asked. As soon as we got home, our son got into bed, turned off the lights, blasted his music and entered into his pre-sleep zone. Happy.

Once upon a time I was scared for our suggestible son to be around others with communication difficulties. When he was little, the one person he had most problems with was a child who was nearly non-verbal at an after-school club. He simply could not understand why she could not speak in a way he understood. It escalated him. She used only strong language and he mimicked it. He was used to others over-compensating for his own lack of communication skills. He couldn’t interact with her in any kind of positive way. We thought this would be what would happen if he went to a specialist school. He has always been very verbal, even if his understanding often lags behind the words.

But in reality, what happened after we moved him to a specialist school was that his whole being relaxed. This also coincided with – at the suggestion of the school and other professionals involved – giving him more freedom to dress as he likes and to let his hair grow long, acknowledging his gender non-conformity. Our son who was anxious and misunderstood for most of his life eventually, after an adjustment period, lost all those pressures to conform that had been guiding his every day. And those challenging behaviours that grew out of self-preservation started to melt away as his self-confidence grew.

Last Friday night was a vividly wonderful example of the positive ways our creating space for and opening up to the world about our son’s uniqueness has brought him and us joy and support.

There, in that room, was a beautiful future, a vision of life surrounded by friends and supportive people. The laughter and smiles on our son’s face as he was interacting with his friend filled my soul with hope. Seeing that he had role models of adults like him in that room, knowing that there were support people nearby and hopefully would be when in some very distant day that I am no longer here for him, that was exactly what I needed to see. Knowing that some of the adults in the room – community leaders – understand FASD because we have over the years given them the information that they need was also gratifying. The night was good for me too.

Many parents of children with FASD feel fear for the future. I realised at some point a while ago that my fear of his vulnerability was driving too much of his life. I had to stand down. My hypervigilance wasn’t helping. It’s a work in progress, but as he has accessed more support and as we as a family have learned more about appropriate strategies things have become easier. Much easier, if not ‘easy.’

Someone said it simply, “He is growing up.”

His is not the same trajectory other kids might typically take. But once we let go of the way society defines our son’s stages and ages, we were able to see just how little that matters.

He is relatively happy.

He is growing.

He is becoming better able to express his needs and to advocate for himself with words not actions.

He is learning to control his impulses.

He is feeling more secure, less anxious.

He has friends at school who are like him so he isn’t in a constant state of confusion, trying to understand social situations that were way above his head.

He has other friends locally who know about his FASD, whose parents know about his FASD and who also know about and celebrate his considerable strengths.

He has compassion. He is strong. He knows love.

As a mum, I wish my fear had not kept me focused for so many years on trying to help him ‘fit in’ rather than putting my energies sooner into finding him places where he could ‘be’.

If you could have seen that singing, dancing room full of happy young people and adults you too would have felt a sense of great hope.

For all those families in the midst of hard times, please don’t give up on the hope.

 

When the Flu Isn’t Just the Flu – What Happens When an FASD Caregiver Can’t Cope?

Blog_Flu

By SB_FASD

There I was, flying along at a fairly fast pace, feeling excited about the new year and really encouraged by what seems to be a possible paradigm shift in the UK with regards to FASD. OK, and yes, maybe also a little overwhelmed by the enormity of what it could mean if we collectively get this right for the lives of so many who have been ignored for way too long.

And then, three weeks ago, I caught the flu. It smacked me in the face and cut me down at the knees like nothing has for a long while. A few sheet-drenched days of fever, chills, splitting headache, dizziness and weird vision that had me thinking something worse might be happening inside my head. Flu followed by secondary strep throat and chest infection. A winning trifecta. A pulled muscle in my back from coughing too much. Unable to eat properly. The inevitable delay in getting the NHS to cough up any antibiotics. A lovely trip to A&E on a Friday night to ensure I had not stupidly poisoned myself by not realising American acetaminophen is the same as British paracetamol. And through all of this, trying very, very hard to ensure our 14-year old with FASD and his 16-year old brother with Chronic Fatigue Syndrome did not catch my plague. Praying that my husband – who was key to keeping things afloat over the past three weeks – didn’t catch anything either. He and our 14-year old had flu shots, thankfully.

It’s been three weeks now. I even have a bed sore to prove how pathetically holed up I have been. There’s nothing quite like that to make one feel old, worn and bemused. But as I start to feel human again, I am feeling positive about some things and scared about some others.

A few years ago our son with FASD would never have understood my need to stay segregated from the family. He would not have been able to empathise with me. He would likely have escalated frequently because the confusion and anxiety would have been too much for him.

But, as a family, we have survived these recent weeks. A few moments come to mind, some good, some not-so-good.

While I was in the midst of the worst of the flu, our son wasn’t fully understanding why I could not help him bathe and get dressed for school, as I do most days. I said very directly, “Look at me. Do I look healthy or do I look ill?” And the poor kid stared at my haggard face and burst into tears. I guess I was trying to be literal in helping him to ‘see’ me but it was not my finest moment. I scared him. His eyes were so distraught. I saw in that moment what would happen in his world if I were no longer there. It scared me. News reached us that a good friend and colleague passed away at the same time as all this was happening. That news and the look in my son’s scared eyes left me devastated during the height of this illness.

About a week later (when the worst of the flu morphed into the cough/strep phase), my son and I crossed paths in the kitchen after school. In a very quiet voice he asked, “Are you feeling a tiny bit better, Mummy, just a tiny bit?” My heart melted at his gentleness, at his compassion. At his need for hope.

Another day, when it was just the two of us in the house, I heard him moving quickly and making some panicked noises in his bedroom. I could tell something had seriously distressed him. I crawled out of bed to see what was happening. He had a 2-litre bottle of water in his room and had spilled about a litre of it all over the floor. He thought quickly – he gathered towels, he removed the wet duvet, he understood the danger of the wet wires, even as he was teetering on dysregulation. I reassured him how proud I was that he knew the right things to do and I helped mop up the remaining mess and change bedding (while hacking and sweating all the while).

Then, a couple of days ago he had been trying to find something for a video he was making. Hours later he said to me in a baby voice that there was a problem with a light bulb in his room. It took a bit of deciphering, but I finally worked out that when he couldn’t find what he was looking for, he had whipped over his head a phone charger that hit and broke a light bulb in his ceiling light. Over the past three weeks, his room had become an absolute pit without Mummy in there every day tidying it up. So the clean up of the broken bulb was a bit more intensive than it might otherwise have been. I had to clear the floor so I could vacuum up the broken glass. Maybe this doesn’t sound like a ‘win’ but it was. A few years ago this would have been all-out chaos, the entire room would have been literally smashed up. I would not have been able to handle the scene in a weakened state. Instead, we dealt with it, he left the room (his idea) when I started to vacuum as we both know he can’t cope with the noise.  Peace was restored relatively easily. He coped with waiting for new bulbs until his dad could get to a shop.

There is a lot to be thankful for in these fairly mundane stories. When Mum goes down, things can fall apart fairly quickly but this time this house, this house has stayed floating.

I see the weariness in all their eyes. I try to listen to stories from school. I try to show interest in the video of the extra large gummy bear with a heart in it. I nod when being told about some twist in a video game. I take baby steps to reengage. But this mum has been lying here watching box set after box set trying not to think about her mortality. (It’s especially hard not to when the GP seriously thinks you may have OD’d on paracetamol/acetaminophen and sends you directly to A&E for emergency blood tests.)

The weight of it all sometimes can’t be ignored. I find it hard to walk the line, trying not to be dramatic but acknowledging how very ill I have been is important to our family’s wellbeing. Being an additional needs caregiver is a tall order sometimes. And sometimes, sometimes we can’t do it. It’s hard in any household when a main caregiver is ill but it has a more profound impact in our house. The strains are magnified. It all is just that much harder to cope. And still, not everyone ‘gets’ it.

I feel lucky to have a network, a friend who can come over at a moment’s notice when we were sent packing to the A&E. I feel lucky that there are family members and friends who check in. I feel lucky to have employment that allows me the ability to recover rather than rush back into the fray before I am strong enough. I feel incredibly lucky to have a partner in crime who stays close and who looks after me. Even still, we have been barely getting by, feeling quite isolated and like people didn’t really understand just how hard this has been for our entire family.

But too many are out there who don’t have any safety net. Too many are struggling on this fine edge between coping and not coping: people who might not yet have the diagnoses and therapies in place that our son and our family have accessed, people who might not have the insights into alternative parenting strategies and appropriate support in school that have turned around our family’s trajectory. People who are where we were a few years ago but who don’t yet see the glimmers of hope we found.

What is out there for those people when they hit that point that I hit where they can no longer keep their heads up?

I do worry about the future. It scares the heck out of me. But I see these small signs of progress and I cling to them. I hold fast. In a crisis of spilled water, our guy knew what to do. That makes my soul sing.

I have sorely missed the hustle and bustle of being out there in it all with my boys. But there is some hope in the fact they all have gotten through this, in knowing that today after years of really difficult times we are stronger than we were.

Self-care is going to be my new buzz-word. I fear I was too worn down and that’s why this knocked me so hard. And next year? Next year this ageing body will be first in line for a flu shot.

The entire FASD community is fighting a life-and-death battle for systemic and lasting change. But we also have to remember we are all of us first and foremost on the frontlines in our own homes, and sometimes that is more than we can handle alone. It shouldn’t be so hard. And we shouldn’t judge when some find it overwhelming. This is exactly why society must put in place more funding and more supports for families affected by FASD. Whatever superpowers we may convince ourselves we have, we are in the end just human.

Clearing Shelves Stacked with Someone Else’s Dreams

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By SB_FASD

Oh sweet child, today you asked to clear out your room. You have been saying for weeks that you wanted to do this. I kept finding excuses. I didn’t want to face what I knew was coming. But you dove into the project. Knowing how this sort of task can easily overwhelm you, I calmly said I’d help, even though it was early and I was tired, un-caffeinated and unconvinced.

And soon there we were, knee deep in the tomorrows I had thought you’d have as you swept away my earlier visions of the way your future might unfold. The future I was creating for you in my mind, before we understood your FASD.

“You bought me too many books.” Yes, I suppose we did. I said, “I know, but we used to read them together.” You replied, “I don’t like books with too many chapters, too many words.” I know that now. You suggested we could get more workbooks. You wanted to keep exercise books. “I have too many copies of ‘Alice in Wonderland,’” you said. Because, my son, at one time you were completely and utterly engrossed in Alice, you fixated on the fantasy world. We watched movies. We read books. We watched an Alice ballet. But okay, now I see you are ready to move on.

“These books are baby-ish,” you said, sweeping away the books about bugs, about colds, about how children lived in Anglo-Saxon days. The books with pictures that we spent hours looking at, making up stories when reading was too hard. The kids’ joke books you loved but never really ‘got’. This isn’t the first time we have culled these shelves. Some of these books are ones we thought might give you some important info in a more accessible way. But you’re right. They are for much younger kids.

Some books stayed – Spy Kids, all the playbills from the many plays you have seen, a collection of the later Biff and Chip books, the Diary of a Wimpy Kid series. And of course Amelia Bedelia. She is so literal and she tries so very hard, just like you. You still laugh when she gets herself into a pickle every time.

We understood at a point that you do better with chunks of information, accompanied by visuals. So we have a large collection of DK Eyewitness Books that you and your brother used to page through – covering everything from the weather to history to the Titanic (that one you kept).

Book by book, I had to bite back my regrets. All those Dr Suess books that I adore but that I know now must have completely confused you with their nonsense words and silly pictures. I held in my arms some of the great children’s literature I loved as a child, trying to decide if I am ready to let go of my dreams of reading these with you, knowing I must.

And the toys and games. “I hate puzzles.” I flashed back to so many times we tried to do puzzles with you as a young child. You would get so frustrated. You had to try the piece every which way until it eventually fit. Even if it was a triangle into a square hole. You kept at it, determined. You did eventually get there. I had no idea then how your brain struggles to think abstractly. That practical trial-and-error approach was you trying your absolute hardest. A reminder for me of the way you learn best – hands on, experientially. I stared at the newer 120- and 200- piece puzzles, agreeing we could get rid of those now.

Today you were prioritising you. Rightly so.

I am proud of you. It can’t have been easy to move me into action. I am sorry it had to take such sheer determination on your part. I should have been listening more closely.

But I would be lying if it didn’t admit that I spent the day grieving in a way I haven’t done in a long time. I spent the day missing those earlier years when it was easier to get you to do what I thought was best. I spent the day second guessing myself, as I accepted again that I don’t always know best. You have always shown me what you need. How hard it is sometimes to listen.

We say it all the time, that young people with FASD are often socially and emotionally half of their chronological age: “stage, not age.” But these teenage years are tricky. That ‘rule’ doesn’t apply evenly and it’s not consistent. It’s dependent on lots of things. In a day you can go from being quite surprisingly mature to acting like a much, much younger child. Sometimes your insights catch my breath. Other times, I feel fear when I have to repeat something very basic that I know you once knew. I really don’t know everything that you need these days. You are a glorious mix.

You are all about music, electronics. You have taken on board the idea that sensory items help you, so we kept a shelf free for the slime. Today, in a new toy store full of toys, you chose a sensory bed tent. It has a light inside. And a unicorn on the outside. You still want us to create a stage in your room with curtains that open and close with a string. We will try. I am not convinced you really wanted to get rid of the dreamcatcher and the emoji pillows. I was surprised you asked for us to bring the Lego back in your room. Then I grew worried as storm clouds gathered when you wanted to recreate a Lego schoolhouse that you long ago smashed apart. The pieces are mixed in with thousands of other Lego pieces now, making it unlikely we can recreate that model.

So, where is all of this going?

When we first started pulling apart your room, my original plan was to put those DK Eyewitness Books on a bookshelf in another room. But I have been staring at them long and hard. When you want to know something, you google it. You learn from YouTube videos. This is a real strength you have, your ability to navigate online. You are not ever going to go to those books for information. I get that. I have to let them go.

I have to let it all go.

I love you so very much. I know these things mean nothing in the long run. You are doing so very well, as you learn to understand your body and your sensory needs, as you show us your strengths that come from having a mind that works differently.

You have a rack full of sparkly dress up clothes. You love performing.  Your Christmas list is full of special lights, music and technology. Your dreams are in some ways larger than life. But who among us dares to limit you? You are so talented, who knows where they may lead? So, yes, I will sweep clear those shelves so you have room for disco lights and microphones and amplifiers and speakers.

I promise I will try to remember that in your 14-year old body is a unique and growing young soul that needs to feel comfort and nourishment in the items that surround him, whose room should not be a place where he looks around and feels inadequacy in failing to meet someone else’s vision.

It had never occurred to me that you saw those things in your room as my failure to understand you and what you really like.

Dear amazing you, thank you once again for teaching me what I needed to learn.

(Now, how do we get rid of all of this stuff out of our bedroom, where it landed throughout the day, leaving me with no path to walk?)