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.

 

 

Christmases Past, Present and Future: An FASD Story

Blog Christmas Past

By SB_FASD

One Christmas stands out in my memory. Dinner at a relative’s was running late, the turkey wasn’t yet done but the house was filled with the sights and smells of Christmas. Our guy was three years old, maybe four. The sparkling tree had these round glass balls that spun when he touched them, he was drawn to them. I couldn’t keep him away. I feared the whole night he would break them. Relatives were full of consternation. Or at least that’s what I felt. There were piles of presents he wasn’t allowed to touch. Everywhere he moved he was met with a ‘no.’  I remember taking him in my arms to the stairs. We sat halfway up, me holding his squirming, screaming body tight, like a pro wrestler. Hoping for that moment’s release of tension that often came after a deep bear hug. I couldn’t have told you then why he was in this state. I just knew I wanted to leave, to take him home. But we didn’t. Couldn’t. Wouldn’t. Even now, a decade later, that Christmas haunts me. It was nobody’s fault but he was miserable. I felt defeated.

Too many other past Christmases flash through my mind. My own trepidation. His distress. I felt unable to understand why these days were not fun and full of the magic I felt at Christmastime as a kid. This was my favourite time of the year. My mother made it all so special. I felt like I was failing as yet another toy was broken in nanoseconds on Christmas morning, as yet another moment spiralled out of control, as yet another Christmas day was endured rather than celebrated.

Don’t get me wrong, we did have moments of wonder. Visiting Father Christmas. Tracking his journey. Hanging stockings. Carrots for the reindeer. Making paper chain decorations.

Putting up decorations could descend into a horribly tense time. Chaos and confusion. Tears. That sinking feeling would start to grow in my stomach and not leave until the decorations were put away. I felt Scrooge-like.

We didn’t know then. We didn’t understand. It was years before our guy had a diagnosis of FASD. I had no clue the very many ways all this was confusing him, causing him to be overloaded with sensory and cognitive input. I didn’t know why this was happening.

Flash forward to this year, Christmas Present. While he was out of the house one morning, I quietly put up only about 1/3 of the decorations we have, focused mostly in just one room. I put lights on the tree but left one box of decorations in the living room, too tired to finish it all. Later, when I wasn’t home, our now 15-1/2 year old son decorated the tree quietly, on his own. My husband said he just started to do it, so he let him get on with it. This never would have been possible before. My heart swelled three times when I saw that tree trimmed. It felt like something major had happened because it had.

This year our son only produced a Christmas list on Christmas Eve for Santa. Luckily Father Christmas had known our youngest had been waiting for a DMX controller for his growing stage light collection. If you’ve never seen one, it is an intimidating looking board with slider controls and buttons to manage different lighting effects. (Last year his main Christmas present was a moving head light, so yes he’d been waiting a year for this.)  Father Christmas knew that DMX cables were needed. But things in the North Pole are a bit behind technologically and he didn’t know you also need a terminator to plug into the last light in a chain of lights that allows them to each be controlled independently. So, of course, these lights were not doing what our son had waited a year to be able to make them do. We discovered this before heading to his grandmother’s for Christmas dinner.

We arrived just as dinner was going onto the table. We have agreed this timing over years – so there is no more waiting around for hours, staring at presents. This year our guy didn’t want to sit with us to eat. He had a game to play in the hallway on his own. We occasionally put a little plate of food next to him (that he didn’t touch-he didn’t eat real food for 3 days over Christmas). No one commented. He joined us at the table for Christmas crackers. After the meal, our immediate family of four quickly gave and opened our own presents and left the rest of the extended family to open all of theirs while we were not there. Theirs is a whole-day event. We are only there for a few hours of it. His older brother ‘gets it’ and helped us identify when things were possibly starting to fall apart.

Back home, it became obvious our guy was now stretched to his limit. Even though we’d arrived late and left early, we had stayed too long. He was overtired. Overwrought. He was frustrated he couldn’t make the stage lights work as he wanted. He started swearing, saying they were rubbish and he wanted me to take them out. All of them. And the DMX control board. I started to use my calm voice, telling him he’s ok. But he kept insisting I take the lights and board out. He started to throw things. I stopped talking over him. I listened. I took out all the lights and the treasured DMX control board.

I had realised he didn’t want to break them.

I was so proud of him in that moment.

Once these had been taken from the room and I left him alone, things calmed. In Christmases past this whole scene would have ended with a smashed-up room.

He has learned to tell me what he needs. I have learned to listen. Only perhaps 2 or 3 things had been impulsively thrown. The scene de-escalated quickly. Nothing was broken. In this entire month, it was the closest we had come to those old hard days. And within 10 minutes we came out of it without any major problem. A tech savvy friend came to our aid on Boxing Day, showed him some fundamentals about how the board works, and told us about the missing terminator thingy, which we have ordered and will arrive by New Year’s.

During Christmas Present I have felt more festive than I have in years. Why?

  • We have simplified these holidays.
  • We have learned to listen to our son as he tells us what he needs. He has been helped over years to identify what he needs.
  • We have stopped insisting he sit through long meals full of foods he doesn’t like.
  • We have helped extended family understand his brain works differently and over time they too have changed their expectations of how we will participate in the holiday festivities.
  • We have come to peace with the fact these holidays are different from what we used to have when we were kids.
  • We have opened up and slowly built a wider network of support around us, so we have a core group of friends who ‘get it’. People who can come to our rescue when needed as our friend did on Boxing Day. He knew.
  • (We also have taken out full insurance on every electronic item for years now, and that relieves great stress.)

I also feel more optimistic about Christmases Future than I have in a long while.

I wish we could go back in time. I would cuddle that confused and overwhelmed little one. I would take him to someplace quiet. I would have gone home when I knew he needed to leave. I would follow my mamma bear instincts and do so much different, even as we had to also ensure that the day was magical for our elder son. There were ways we could have done things so much better, had we known. But we didn’t know. He was undiagnosed. We thought he ‘had to learn.’ And I’m not saying this Christmas was perfect, I still needed a day basically in bed binge-watching sappy movies to allow myself space to recover. But I did. Because I know what I need now too.

I see in support groups so many parents have struggled and are still struggling this year. I get it. We have been there. There were too many Christmases that ended in tears, shouting, frustration. I am still there in some ways – still hypervigilant and expecting things to explode. But they didn’t this year, not really. And I have great hope for Christmases Future. I see the progress we are all making. Over time huge changes are possible with the right support, the right school, better tools, individualized targeted strategies, with insight that draws us back constantly to the fact that FASD is brain-based and these bewildering behaviours are not intentional. I am so pleased with the great strides we have made as a family. They are hard-earned and deserve to be celebrated.

I am so intensely proud of our son. The tree decorator. The DJ. The light master.

Despite it all, despite all the failings I still feel over Christmases Past, our young son’s continuing belief in the magic of Christmas inspires me to be a better mum, a better person. Progress is possible. And I believe with every ounce of my being that Christmases Future – indeed the entire future – can and will be even brighter.

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P.S. – This isn’t all about mums, see also:  Father Christmas Finds it Hard (2017)

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.

Transitions and the D-word

Blog Transitions

By SB_FASD

Usually when we talk about transitions in supporting someone with FASD we talk about the little moments most people take for granted: the getting out of the house and into the car, the getting ready for bed after a busy a day. That’s because these moments can be ripe for escalation and chaos if they are not well prepared in advance. For a person with FASD, transition can trigger anxieties or they may have trouble switching cognitively from one task to another. They may have trouble estimating the time involved or they may simply be too on edge already to have another demand placed upon them. Anyone living in a family affected by FASD knows things can skyrocket quickly. A lack of impulse control can sometimes mean words and fists and heavy items can be flying when the person’s fight or flight instinct kicks in. Dysregulation might mean the entire seemingly simple moment of transition can explode. Moments can be fast and furious.

But this post is about another kind of transition. The big kind. The moving from one phase of life to another. Not unlike those micro transitions, there are so many ways these macro transitions can go haywire. As a parent/carer it’s intimidating and nervous-making.

No doubt this will not be the last post about this topic. But it’s the first about our little one transitioning into adulthood. This moment where we are now is known. As a family we’ve learned how to cope here in this stage. Suddenly I find myself wanting to hold onto to ‘now’ forever.

But as they say, time and tide wait for no one.

Two things happened this week that leave me thinking these thoughts. Our son and I went to see Little Mix at the O2 arena. And we visited a local college to prepare for the next phase of his schooling.

The Little Mix concert involved nearly a year long wait. The tickets went on sale before Christmas last year. That’s a lot of months in the life of someone with FASD – of any kid – but especially for a young person with FASD. For years he has been a die-hard Little Mix fan. His indelible mark on the mainstream secondary school he attended was winning his school’s talent competition as an incoming Year 7 student performing “Salute.” Even still, over the months of waiting for this concert we went through waves of him telling me he didn’t want to go because there would be too many people, it would be too noisy, it would be past his bedtime, and a whole string of other related anxieties. Just getting there on a multi-train journey was challenge enough.

We decided to really splurge and stay at a hotel connected to the 02. This was more for survival than luxury, since we had for some reason chosen tickets on Halloween and there was no way our guy could have handled public transportation through London at 11:00 pm on Halloween after the full-on sensory experience of the concert. It had been a couple of years since he had last seen a big show like this.

His expectations were high but his nerves were raw. We weren’t able to book the special needs seats for the show. So we went to the arena early. I was wearing a sunflower lanyard with an ID that shows he is officially registered with our local additional needs database. Even though there were only about 30 people ahead of us in the general queue, our guy was anxious, asking to leave, ready to miss the whole show.

Desperate and feeling intense parental pressure to somehow ensure this long-awaited night didn’t end with a big fizzle before it began, I showed the badge to someone who worked there. I asked, “Is there any way you can help us? My son has a disability and it’s too overwhelming for him to wait in this queue.”

And that’s when it happened. My son looked up at me, “Do I have a disability?”

In his 15-1/2 years of life, he had never heard me say that word. In every doctor’s visit, every SENCO meeting we have been adamant that our guy not hear phrases like this – we would insist that the professionals wait until he was out of the room before going into details. We would demand all discussion in front of our son was positively framed.

We were being led to another, shorter queue so my reply was quick. “Yes. It’s because of FASD. It makes it hard for you to cope with things like being in noisy places and standing in lines. There is another queue we can use.” Access to this other queue, a special elevator and a quieter holding area before we could get to our seats made the rest of the night possible. We weren’t gaming the system. He needed this. He had a right to be there.

But the ‘d-word’ hung there and over me all night. What had I done?

The night was a success in the end, even if I was on high alert for the zillion ways it could have unravelled. I wasn’t allowed to sing. I couldn’t tap my foot. He wore a pair of new ear defenders (“these are the same kind we have a school”) but was quite concerned about noise levels. We were able to avoid the after-concert crush by using a special walkway back to the hotel, so we were thankfully in bed 20 minutes after leaving the arena. We had an awesome next morning enjoying the hotel’s spa. The quite amazing ‘relaxation pool,’ steam room, sauna and glowing mini-mountain of crushed ice provided all the proprioceptive and sensory input anyone needed. This mum realised she needed this as much as the not-so-little guy.

I began to forgive myself.

The reality is that our son has rights as a person with a neurodevelopmental disability. And he is getting old enough now that he needs to learn those rights and how to self-advocate. He’s been doing more and more of this in school and at home. (“My brain can’t handle that” is his main phrase to tell us when he needs a break). But out there in the world, sometimes we need to use the buzzwords that others recognise.

We will of course revisit that conversation time and time again and discuss it in different ways and ensure he knows that the ‘d-word’ does not mean ‘less than’. But it is indeed time to help him self-advocate in the wider world. He’s transitioning into adulthood. And while his transition will be on a different time scale and the goal is more about interdependence than independence, he still needs us now to start that preparation. And this means more than just ensuring he has ‘learning for life’ skills as his school calls it. He needs to be a self-advocate in a system that is harsh and that ignores too many. He needs to know that he has the power to wave that badge and ask for another queue even if I am not there to do it for him. To seek accommodations from an employer. Or to stand firm when some FASD-denier or cost-cutting and overworked bureaucrat belittles his condition or seeks to rescind his benefits as happens all too often to adults with FASD.

The second thing that happened this week was going to the local college’s open day (in England students must be in school until 18 but can switch at the age of 16 to ‘colleges’ that offer wider ranges of programmes). Yet again, we weren’t sure we’d be able to get there. It involved going out in the early evening, never easy once he’s come home from school and is unwinding from the day. He decided to bring his new build-a-bear rainbow cat called Sparkles. The designers of the 02 are clever people, placing a mall all around the arena entrances. No doubt we are not the only concert goers to have spent an extra wad of money there. And this workshop with its accepting employees explaining the scented inserts and beating hearts and soft plush huggable toys was pitched at just the right level for our son who needed some reassurance and comfort in an unfamiliar place.

So there we were at the college open night, carrying the unmissable Sparkles and concerned that the too-small-now silver-sparkled high heels our son was wearing might be too uncomfortable for walking around the campus. But he was insistent. He knows he won’t need to wear a uniform at college and this means he can choose what he wears, this was not the night to battle over attire even if on practical grounds. (When they were making Sparkles’ birth certificate at the build-a-bear workshop it was the first time I had seen our guy tick the ‘prefer not to say’ box for gender, so we did likewise when filling  in his college application.)

I had not anticipated that this was a general open night. There we were waiting in yet another chaotic queue, this time without any lanyard and also potentially needing to escape if our guy became too overwhelmed. Once we got past the initial scrum and were brought to the separate building that houses the inclusive learning section all was well. But standing there in that glorious mix of a mainstream school hustle and bustle with kids who seemed so much older and who were towering above our guy, those old familiar worries crept up on me. Will he be safe here? Will they bully him? Will he be understood? Is he ready?

We have had 3 years where he has been in a protected environment at a specialist school and that has allowed him to relax and to grow. I know this college also will protect him but it’s less isolated. To get to their inclusive learning building you have to walk right through the main campus.

“I only have one more year of school,” he said that night and that’s when this hit me again. We haven’t really been talking with him about his future. “You can stay in school until you’re 25 if you want.” His eyes popped out of his head. “It’s not like school now. There are all kinds of things you can do. Music or whatever you want. You can do a supported internship somewhere. There are lots of options. You don’t need to decide now.”

In other words, that Education Health and Care Plan was hard fought for and every ounce of its superpowers will be utilised.

You have a right to education and supported internships, my son. And we have a job to do to help you understand those rights and all the other rights you have.

A friend took me to task for using the term ‘disability’ when I told the story of that night at the 02. Of course. I was appalled at myself for using it. I know that our son has strengths. I celebrate diversity and uniqueness. I am well aware that the term is fraught with negative connotations. As I said, this was the first time in 15-1/2 years he heard it. And I am kind of proud of that. But sitting in that relaxation pool where he was pretending the overhead water jets were the ice bucket challenge, I forgave myself. And realised we can’t ignore the word either.

We must reject the stigma around the ‘d-word’ and ensure our guy is not ashamed of claiming the supports and benefits that society has legislated are his by right. If that means at times waving a disability pass, then we have to show him how to do that with pride and with strength, not to hide in a queue that might be suffocating or drowning him. If we don’t lift him up now and prepare him for those moments then, who will?

The Lonely Parent

Blog Alone
By SB_FASD

I have been trying to suppress my pity party for days now. It’s not anything dramatic. I almost feel a fraud. I’m not crying into my cup thinking “poor me”. It’s just this emptiness I have been feeling as the parent who is more times than not the one left at home.

When I look out there at the lives that people I love are leading, I realise I am the one who has dropped off chat lists, I am the one who is assumed to be unable to go somewhere. I am the one staring at the TV or computer screen again on a Friday night while our youngest is in his bedroom doing his multi-hour wind-down before he manages sleep. I am by default the adult who doesn’t go to the show, the drinks, the meal, the shopping excursion, the movie, the trip, the volunteer activity, the committee, the family event.

It’s especially obvious at night. Our son’s FASD (and the trailing off of his daytime ADHD medications) makes sleep a challenge and while our evenings are about a zillion times better than they used to be, they are still a bit of a minefield. We haven’t had a major blow up thankfully in a very long time, but things can still tip into a negative loop fairly quickly. It means I can never really ‘relax’ in these evenings. I have learned it’s best to back off, let him set his own environment for the evening, to not stress if he hasn’t eaten his dinner, to provide access to generous healthy-ish or at least calorific snacks and pretty much just leave him to it. This is nowhere near as ‘hands-on’ and demanding as it used to be during years of very, very trying night times.

I can do more to make this evening time to myself meaningful. Of course, I can. I could be doing lots of things – crafts, reading, Skyping. Cleaning would be a service to humanity around here. But so often I am just so deeply tired after giving my all to the day and an intense job that the blank stare at a mindless show is about all I can muster. And if I do anything too out of the ordinary that then can also escalate things. It’s best to be quiet and vigilant.

The reality is I find myself feeling unfit for socialising so often anyway. On the rare times I am able to go out, I am not able to be the person I want to be. I feel the heaviness that I carry with me and I see it reflected back in the faces of those I speak with. Meanwhile, I see family and friends with their inside jokes and giggles and I miss the younger carefree me who would be out most nights just hanging out and having fun. I can’t tell you the last time I went out and just laughed.

I try not to wallow in a negative mindset. The reason I finally gave myself permission to write this post is that I know I am not alone in feeling like this. It’s not comfortable to talk about personal feelings, as we are all supposed to put on that smiley face and not admit that there are times when this life isn’t great. Maybe by my opening up about feeling lonely and left behind, others will too.

Compared to many raising children with FASD who lack any sort of network at all and who are facing crisis situations that thankfully we are not experiencing at the moment, I know I have zero right to feel down. At the end of the day I do have a lovely network of family and friends who are here for us if we need them. I have a partner who is here (and I know he is tired too).

I am not really ‘alone’ even though I can feel lonely.

If I sent out the bat signal right now, there would be people at our door and I am so deeply thankful for them. I am not criticising them. Not at all. People are there if I reach out.

What I am talking about is something more subtle. This withdrawal from ‘normal’ socialising has been building over more than a decade. It’s maybe happening a bit more now that our son is older and has retreated more into himself. It’s less easy to get him out to social activities.

Maybe I am only realising it because things around here are easing and I have the mental space to even think about it. I am becoming acutely aware of the conversations of a more diverse, rounded and full life that happen around and behind me even when I am out – literally as happened at a café just this week when I felt lost in a sea of chatty conversation and I snapped. (We do have a regular Friday morning coffee with family and friends that is the main social lifeline in my world, but often I can’t make it due to work). There was this buzz of ‘things happening’ and I felt so out of step with it all. The one Friday night I did get out recently, I felt the same way.

The years and years of ‘connections’ have deepened between others around me, and as each year passes I am that much more ‘disconnected’.  Facebook, with all its warts, has become my place to have a giggle,.

I love my children and my husband and my family and my friends. I have a blessed life. I especially feel bad writing about this because I know it’s even harder for our son with FASD who has trouble socialising for a range of other reasons.

I am not complaining. I am trying to explain.

This sidelining happened and deepened over a long period. That is the realisation that has surprised me lately, hit me hard. It’s like everyone out there is on a faster highway and I am over here on the gravelly two-lane road that runs alongside it, going in the same direction but watching from a different viewpoint, in a time warp. And to be fair, our lane is slower, bumpier. While others’ kids are careening toward their future, we are parenting as for a much, much younger child. Those different speeds have become more apparent as time goes on. There’s a reason for that, teens with FASD diverge more from their peers than when they were younger.

So, yes. The reality is that my reality is different. Our lives are intensely focused on the needs of a sweet, loving young person with FASD who is growing into a young adult on his own time scale, in his own way. There are immediacies and worries and concerns that come with that which are very real. When I am out with people, it feels like if I am true to my life and experiences I suddenly bring this intensity into a room and the atmosphere goes heavy. I feel that character in the Peanuts, Pig Pen, who always has a cloud of dust around him, over him. People love and welcome Pig Pen – he’s part of the cast of characters – but they keep him at a slight distance lest that dust settle on them too. They are more relaxed when he is not there.

I guess what I am trying to say is this: life as a parent/caregiver of someone with a neurodevelopmental disability like FASD can be isolating in ways big and small and that has a profound but sometimes subtle compounding effect on people over time. It’s okay to acknowledge that without feeling like you are moaning (I’m nearly through with this blog post and still trying to convince myself of this).

Just because a family affected by FASD may seem to be in a ‘good’ place, doesn’t mean that it’s going smoothly or easily. It doesn’t mean the pressure is off. They are probably always worried a bit about what’s around that bend. They still need you.

If you are in the wider network of someone with FASD and their parents/carers, send a little hello text. You probably have no idea just how welcome that simple act would be.

FASD Day – Sharing Hope on the 9th Day of the 9th Month

Blog_2019F ASD Day

SB_FASD

The ninth day of the ninth month is FASD Awareness Day, chosen to remind us all of the importance of staying alcohol-free for the nine months of pregnancy. It’s a day when people stand up with and for those who have FASD – a lifelong brain-based condition that is caused by alcohol exposure in the womb. It’s a day we encourage the powers that be and the general public to address this public health crisis with the seriousness given to other neurodevelopmental disabilities like autism.

It’s a day when we marvel at all that our own son, now 15, has accomplished in his life, the great strides he has made in understanding himself and taking on board strategies that can help him. It’s a day we celebrate his strengths and are thankful that he has been surrounded by professionals, family and friends who have stood with him, with us, as we have come from a place of crisis to a more stable ‘now’. It’s maybe not unrelated that today he had a music mix released – all by his own doing – on Amazon and all the major music streaming platforms. If we are honest, we aren’t even sure how he did this – though we know he’s been working hard at it for weeks, showing us once again that he has vision and abilities that we have yet to fully understand. Magic!

Statistically, here in the UK 6% or more of the population may be affected by FASD but most are undiagnosed and misunderstood. They are in our classrooms, in our workplaces, in our communities, in our families – struggling. If unsupported, it’s likely that on top of the physical, sensory and cognitive challenges they face they are also grappling with secondary issues such as mental health problems, addictions, homelessness, sexual vulnerability and financial insecurity. If FASD is unaddressed and not properly supported, it can become a perfect storm that wreaks havoc, sometimes across generations.

But FASD Day is a day of hope. It’s a day when people with FASD stand with others for change. One initiative is the Red Shoes Rock awareness campaign that spans the globe, encouraging those with FASD to be bold in their self-advocacy, to stand up and be seen. It’s  a day when people speak out to encourage more awareness of FASD and the risks of alcohol in pregnancy.

Here in the UK, change is coming in ways big and small. The government is finally responding – a new NICE Quality Standard on FASD will, by September 2020, lay out five areas for improving the quality of care regarding FASD; the Department of Health will be releasing a report soon addressing FASD and for the first time ever it has set aside nearly half a million pounds to fund voluntary and charitable organisations work on FASD. These are baby steps but important, the signs that like a huge ship at sea turning direction, the massive systemic change that is needed is underway. These breakthroughs are happening after decades of dedicated work by pioneers in the field keeping this issue at the forefront – dedicated experts, a handful of MPs, peers and stakeholders. And it’s been fuelled by the collective voices of this community increasingly joining together and insisting that policy makers hear our voices.

In too many of our homes, the changes, however positive, will still take time to translate to the peace and security we want for our loved ones. Our children – big and small – are still facing daunting challenges every day of their lives. It’s heartbreaking to know that they face a world every day that does not respect and honour their courage and effort, to know they do not have access to the tools to help them nor to professionals with appropriate knowledge. Worse are those instances when we hit a brick wall of professional indifference and stigma.

FASD Is often the missing piece of the puzzle when trying to figure out the ‘why’ of behaviours that are confusing and sometimes alarming. FASD can be the reason why a child might have trouble learning or calming, the reason why a young adult might keep melting down or striking out when frustrated or overwhelmed, the reason why a person we love doesn’t follow instructions, lacks impulse control or seems oppositional, the reason why our loved one struggles in school or can’t keep a job or self-harms.

FASD is called a hidden disability because we cannot see the very minute but very real organic brain damage that happened long before they drew their first breath. For someone with FASD, changes in the way their brain wiring developed means they cannot do some things others take for granted, at least not without appropriate and lifelong supports. Little people with FASD grow up into adults with FASD. They all deserve our empathy.

People with FASD have many strengths that can be built upon to create pathways toward success, but this can’t happen if they are constantly berated, punished and made to feel ‘less than’ for things beyond their control.

Someday here in the UK FASD Day will be widely acknowledged. But in the meantime, some of the biggest changes are under our own control. If you know someone who might have been exposed to alcohol in the womb and who is struggling, give them a break. Love them. Don’t blame them for actions that you find confusing. Learn about the ‘neurobehavioral’ model of support, educate yourself. Join local and online support networks.

Though it may be hard, as it remains a postcode lottery, help them seek diagnosis and support. Fight for an Education, Health and Care Plan. Fight for thorough assessments for speech and language (including receptive language), for occupational therapy/sensory integration, for cognitive challenges with executive functioning and adaptive planning, for the benefits and supported employment they deserve. Appeal, appeal, appeal. Make some noise. Contact the papers, radio stations, MPs, Clinical Commissioning Groups. Educate your family, friends schools, communities. Open up and let others know what you are going through. Raise awareness of the risks of alcohol in pregnancy. Be bold. Wear red shoes if that reminds you that we are all part of a much bigger picture.

“The road is made by walking it.” Together we are making changes – led by people with FASD who show us what they need and together with an amazing army of people from many walks of life and from many backgrounds and skills sets.

Change is coming.

Of course, for those who live it, every day is FASD Day.

But on this 9th day of the 9th month, as we are rocking in our red shoes to our son’s newly released track (!), we send you greetings and solidarity. From our house to yours – we share with you our hope for brighter tomorrows. With your help and working together, we will get there.

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.
_________

*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?
 

Be Angry, But Not at Those with FASD

Blog_Angry

By SB_FASD

This is for the parents, carers, guardians, extended families and friends out there who are faced with some very long days as they struggle to support a loved one with a neurodevelopmental disability. It’s for those who bear the brunt of the very hardest realities of the way that underlying atypical brain-wiring in a child can affect daily life. Specifically, this is for those who love and care for people with Foetal Alcohol Spectrum Disorders. In the UK as many as 6% or more may be on this spectrum and yet there is simply not (yet) awareness and support for those who are coping day by day with the social, emotional, sensory, cognitive and physical challenges that can come with this condition.

So very many families are in distress, misunderstood, sometimes judged unfairly, struggling in towns and cities for some sort of joy in a life that can be consuming with so many ups and downs and dangers and uncertainties, especially if the right diagnoses and support aren’t in place.

There are limits to what parents and carers under intense pressure can endure. We are human. Helplines and support groups are full of pleas for help. Collectively, our families and homes are under siege. While there are signs things may be changing at a high policy level, on the ground there still is no visible way forward for far too many. The pain and the heartache in this community are palpable. It run deeps. I get it. I do. I have felt it. I have lived it.

But then I see something that bubbles up time and again and it really sucks the wind out of me. I see parents and carers directing this absolutely understandable angst back at their children. I see the cliff edge where compassion stops. Parents and carers react when their own fight/flight instincts kick in. Sometimes it goes to unhealthy places. In recent days I have seen parents call their children horrific terms I won’t repeat here. I cringe knowing that adults with FASD will have seen those comments too.

I weep inside because those young people in those families will be absorbing all that negativity. It will make it harder for them to self-regulate. It will make it harder for them to learn coping strategies. It will in fact deepen the very behaviours that are fuelling frustrations, behaviours that are due to the underlying hidden disability, not because the person with FASD is being deliberately naughty. As the young person ages and enters adulthood the issues compound and sometimes the gap can widen at home.

So I say to a parent or carer who is at wit’s end, if you’re going to be angry…

…be angry at a system that refuses to see the organic brain damage caused by exposure to alcohol in pregnancy. Be angry that in most places in the UK it’s nearly impossible or can take years to get diagnosed and assessed for a Foetal Alcohol Spectrum Disorder. Be angry at professionals who ignore, belittle or patronise you for fighting for your child’s needs. For professionals who deny this spectrum exists. For practitioners who in their arrogance insist on using therapies and behavioural approaches that do not work and can cause harm to someone with the cognitive processing issues of FASD. Be angry at national, regional and local policy makers who refuse to fund and support people with disabilities and who do not even have FASD on their radar because those definitions of disabilities too often exclude people with FASD. Be angry if someone knows a child was exposed to alcohol in the womb and doesn’t bring that information forward. Be angry when this is minimised to avoid paying for support and services. Be angry when people deny the risks of drinking alcohol in pregnancy and try to confuse public messaging on this. Be angry because an adult with FASD is turned away from benefits. Be angry because a request for an Education, Health and Care Plan assessment is denied. Be angry because a student with FASD was excluded or off-rolled rather than the school trying to support their special educational needs. Be angry at the pub culture in this society and the pressures on pregnant women who are too often confused by inconsistent or conflicting information and who might drink for many reasons, but not to harm a developing child. Be angry when a birth mother is denied the help she is seeking. Or when stigma suffocates progress. Be angry when another young person with FASD ends up on the streets or in prison or dies too young.

Yes, be angry. I get it. I really do. Be so angry you force the system to change. Use that anger to fight for diagnosis, services, benefits, a place at the table.

But…please, please don’t be angry at the person with FASD who is in your life. Don’t be angry at a kid who can’t do what you asked. Who is still not dressed and ready to go. Who threw something. Hard. And maybe even broke it. Don’t be angry if you didn’t get a birthday card. Or if that special treat was eaten. If you were ignored yet again. If the wall was drawn on or the paint spilled. Don’t be angry if you can’t go to a family birthday or if you have been sleepless for too long. Or if you just got hit by fists or maybe words that might even hurt more. If pants were soiled. If new shoes destroyed. If your holiday dreams didn’t pan out because someone got overwhelmed in a new place. If you spend sleepless hours each night because a child can’t settle. If you yet again bear the brunt of yet another impossible day at school. If your teen or adult lacks the ability to handle situations you think they should. Don’t reduce all of that down to anger.

Learn the nuances of those feelings. Train yourself to control those surges. (That is after all what you are asking your child to do. If you can’t, how will they? Where will they learn to do this?)

There’s a whole dictionary of words that can better explain your emotions. You may be frustrated or exhausted or discouraged or afraid. You may be disillusioned or uncertain or overwhelmed or triggered. You might be fearing a never-ending repetition of moments such as these. Looking into that future can grip your guts and bring you to your knees. For all of the reasons above and more you have a right to be angry – but not at that vulnerable person who depends on you. It’s not them against you. You are on the same side. The battle is you together against the system that must yield, that will yield.  You have to form an unbreakable alliance, even if your loved one isn’t always able to hold up their side of that due to whatever additional traumas and attachment issues they may have, even if addictions and secondary mental health challenges make this hard. Your commitment must be so strong that even in the midst of all that can happen, your loved one knows you are present and un-losable, even when you are a tired and worn out and agitated and upset. Even if outside help, involvement of authorities or alternative living arrangements are needed. Especially then.

Because they will know deep inside that love is solid. They won’t internalise that you are angry at them. They will come to know you are instead angry at a system that doesn’t bend for their needs, doesn’t see how hard they try, puts up walls where there should be pathways and steps to help them get to where they have a right to go. And by helping them understand the nuances of your own feelings and by showing them that you understand some of their most confusing actions are due to how their brain works, you will be helping them gain emotional literacy. By redirecting and renaming that ‘anger,’ you will be opening doors for your child’s future rather than forcing them further into themselves. These early lessons will either teach them that adults are always mad at them and there is no way to explain their needs to ‘power’, fuelling a negative spiral, or they will learn that they can trust and engage with authority figures, even when the words and connections are at first hard to find.

They will gain experience needed to become self-advocates.

There are known strategies that can help individuals with FASD learn and grow using their many strengths. People with FASD can and do have positive lives. They can and do acquire individualised coping mechanisms and strategies. They can and do contribute to society in many ways … if they get the right start and support. Just knowing and understanding they have FASD can improve their chances. A stable living environment is also among the most important protective factors as is positive self-esteem.

So, please, please don’t be angry at your children. Be angry at the system but love and celebrate your kids in all their complexity.

If you don’t, who will?

Every child deserves unconditional love. Every. Single. Child. And a person born with a lifelong and incurable neurodevelopmental disability surely has a right to compassion in their own home. Every. Single. Day. Every moment. Throughout their lives. Even when it’s difficult. They need you.

It’s not easy, but you can do this. Just start somewhere. Find a positive and hold onto it. No one is perfect. Don’t beat yourself up over wobbles. We all have them.

Just remember – kids with FASD are trying. And how you read that matters.

 


P.S. – You are not alone.

Help is available via online and local support groups. Google for help near you. Some links are available here. Many areas if they do not have FASD-specific groups have support for those with disabilities and their families. Reach out. Call your GP if you believe you might be depressed or in need of help for yourself.

In the UK, the FASD UK Facebook Support Group involves more than 2,200 families.

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.