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 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?
 

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?

Slow It Down and Listen

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By SB_FASD

The phone was broken.

Trainers were hurled against the bedroom door.

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

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

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

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

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

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

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

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

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

“It’s okay. You’re okay. I love you.”

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

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

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

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

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

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

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

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

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

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

There is always a reason. Sometimes many.

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

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

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

Everyone with FASD is the primary expert in themselves.

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

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

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

 

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.

 

Doing the FASD Time Warp

BLog Time

By SB_FASD

As we welcome a new year, time is on my mind.

Abstract. Controlling. Forceful. Time marches on, they say. They are not wrong.

But in our house, we are in a time warp. Due to damage done to our son’s brain wiring before he ever saw the beautiful sunlight or felt the touch of another person’s hand, our son is weighted down by time.

For those who love a young person with FASD it can be validating to learn more about the brain-based issues behind the acronyms and terms tossed about by medical professionals (when we are lucky enough to find practitioners who knows about FASD). One of the phrases that helped us better understand what is happening in our own household is the saying that ‘young people with FASD often function at a social or emotional level half their actual chronological age’. Skills levels can vary quite unevenly, as is shown by a thoughtful graphic by Jodee Kulp that is widely shared. This can be an eye-opener.

But lately I have been thinking about all the biases that stop us from truly absorbing what this all means, even as we ‘know’ it.

Today, all teenagers seem to have to grow up too fast.

In our town, one day they are in small primary school classrooms, led through their day by one teacher and side-by-side with friends they have known most of their lives. The next day they are thrust into a 1000-person school with a dozen teachers in as many classrooms, suddenly having to merge into the educational highway.  FASD families worldwide know all too well the devastation that can happen when our precious ones crash up against that kind of unforgiving system.

In a world where teenagers are somehow expected to swim fast or move aside, kids who are on a different curve don’t have much of a chance. And while politicians and educators in the UK begin to figure out that we are sacrificing our kids’ mental health to GCSEs, there are those ‘other’ kids, like our children with FASD, who are spinning in the wind. The lucky ones are still holding on. Some might be in specialist schools, protected for a few more years. But too many are loose out there, flailing. Falling.

Because while we say a teen with FASD might only have the social or emotional capabilities of half their age, we are not really digesting what that means, not making the adjustments that necessitates. Every day in a thousand ways we parents are bashing up against that mismatch and what it means for their lives. We feel frustration at socks scattered on floors, dinners uneaten, doors unhinged, rude words that hit their target because they are said in a voice that is deeper now. But those are just the ‘obvious’ signs.

It means dealing with the disappointment of a 14-year old who waited patiently for Father Christmas, convinced a MacBook and iPad would appear because they make them at the North Pole where they don’t need to worry about money. It means helping him bathe and get dressed, to struggle over tooth-brushing and hair combing and all the sensory challenges they involve. It means Legos and marble runs that consume a room he cannot keep tidy on his own. It means playing silly games and understanding that when he starts to use baby talk or make animal sounds he is overtired or on the road to dysregulation. It means bumping into friends from his old mainstream school whose lives are completely different than his. It means having no sense yet of what relationships entail, no understanding of what half that new and very ripe vocabulary means, being unable to predict in advance the possible impact of saying the wrong thing to the wrong person.

Mostly it means stepping back from others’ expectations. From our own expectations.

Time after time, it means deflecting those ‘looks’ from some family members and friends who believe we are creating this mismatch between a body that has clearly gone through puberty and a mind that is still exploring the world as a much younger person might. It means shouldering past the ‘tut-tuts’ of those who believe he ‘needs to get on in the world’ and we shouldn’t ‘baby’ him.

What it really means is isolation.

For him and for us.

That’s the part that is really hard.

Because even the most well-intentioned and even some who love him sincerely don’t really get it, can’t really ‘get’ this different timeline and different reality.

The holidays are brutal with their twinkling lights obscuring fiendish booby-traps everywhere. We jump aboard traditions when we can. Otherwise, home it is. The same four walls that protect us from the whirlwinds that can unearth him, equally press in on us. We try to be okay with that, but let’s be honest. Sometimes, it’s not so easy to feel so ‘different’ – even as parents we find that hard, we feel alienated from the other parents. How must it feel for him?

So yes, I have been thinking a lot lately about how slowly time unwinds on this alternate clock. And what that means as I myself age.

I fear losing patience, even as I know the ‘facts.’

Most of all, I fear society losing patience.

From the outside he looks grown up. He’s not far off from 16, from 18 – when society flips from compassion (to the extent it exists) to something else. Something harsher.

Sure, we know ‘all kids need to go through the developmental stages at their own pace.’ This is a mantra we all have recited for our children, as we waited for those first words, those first steps, that first two-wheeled bike ride. Somehow, even then, we couldn’t help comparing.

Really and truly letting go of what is ‘expected’ is hard. It shakes you to your core. No matter how ‘with it’ you think you are, it’s still extremely hard to face down that disapproval that is often just around the corner when someone is marching to a different beat. People like sharing those videos of kids dancing to their own rhythm – but every time I see those videos making the rounds I think, ‘Yeah, but do they think it’s cute in daily life?”

Adults with FASD say things seem to start even out for them in the mid-to-late 20s. There have not been adequate studies done about this yet. But I fully trust the wisdom they are sharing. People think I am joking when I say I am just trying to get us through the next decade in one piece.

There is no guidepost for the teenage years. These years pound down on our sweet children at times turning them bitter. At times, leaving them feeling defeated, self-medicating, influenced by those pressures to ‘grow up’ long before they can begin to understand the impact of their choices.

And I fear being guided by fear.

I want to be strong enough to tell the world to ‘back away!’ To let my sweet son grow and learn and explore at his own pace, in his own way. To let him wear what he wants to wear, play with a doll if that is what he wants to do. Let him immerse himself in ‘Gelli Baff’ and to play with slime.

I want to be strong enough to encourage enough social spaces to include him, to not always leave him out because he cannot cope with what ‘is’ – but to build something new that he will enjoy too. To show others that it can be equally fun to do things in a different way. These spaces and opportunities are few and far between (especially hard to find for worn down parents who are swimming hard to keep their own heads above water). How many soft play areas allow 14-year olds?

And when does it change? It seems like it is going to get more difficult before it gets better. If I have a 14-year old that functions at the level of a 7-year old at times, soon I will have a 15-year old or 16-year old who is functioning in some ways at the level of a typical 8-year old.  Maybe an 18-year old with some qualities of a 9-year old. The goal cannot be traditional independence at 18, no matter what The System thinks might be possible.

And yet, though I know this, I reject some of the implications. This mismatch with age and maturity is still not yet the full picture.

It forgets the fact that he is unique. And that in that uniqueness is splendour.

Despite the rule of thumb about social/emotional age versus chronological age, he is NOT a 7-year old. He is a mix. A wonderful and original mix. And that’s the bit most people miss, even those who ‘get’ it.

He has some tremendous skills and talents – some even in advance of his chronological age. He is a delightful fusion of unconventional strengths, innocence, wonder and exploration combined with a lack of self-editing that can be truly revolutionary if we celebrate and recognise this rather than try to stamp out his individuality in the name of conformity. Some of the greats of our world have marched to their own rhythm. They saw and experienced this world differently and in doing so, they changed things. No, our society is not lesser because of that mismatch between my son’s age and maturity and skills – it is enriched by his differences. If we just allow him space to grow.

I guess my hope for this New Year is that we understand that time bends and moves differently for different people.

He deserves to be celebrated for all that he is, not merely tolerated.

I want this New Year to be full of exploration and wonder and mystery and love – for all of us. Each and every one of us, including those who walk this world with FASD. I want there always to be hope.

 

 

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?)

Shifting Sands

Blog Shifting Sands.png

By SB

Once upon a time a little boy used to struggle mightily when going on family holidays. He would become so bewildered by the many changes his brain could not process that he would rail against the world, against us. Strong and fierce in his moments of distress, a sadness shadowed us at these times when we were supposed to be most happy. It was heart wrenching. Deflating. Scary. Lonely. But this year, something magical happened. Sometime between then and now, our little guy passed some unknown threshold. He powered up to the next level, became better armed and was more ready for the challenges.

Yes. We had two whole weeks of a lovely and soul-refreshing holiday at the seaside.

It was spectacular. Glorious. An experience I won’t ever forget.

There was a sign at the top of the steep hill we had to walk down to get to the water. “Apologies, beach steps are temporarily closed due to shifting sands. Please use the alternative beach access.” This in a nutshell explained how we got here.

Our son has a Foetal Alcohol Spectrum Disorder (FASD). His brain wiring was affected by prenatal exposure to alcohol. Like many with his condition, he finds it really hard to control his impulses when he’s under stress, when he processes new information and when his senses are overloaded with unusual sights, smells, textures. In other words, going away on holiday is the perfect storm for a person facing the cognitive challenges of FASD.

Some might think the reasons why our holiday went well this year were just because he’s older now and because we went back to a familiar place. Yes, these things helped immensely. But thinking that was the secret to success would be ignoring the two years of hard work he has done since our last holiday to better understand himself and his needs. It would be ignoring the way we took on board advice and structured this holiday to maximise our chance of a positive outcome.

The game-changer is there are teams of experts helping him, helping us – at the specialist school he now attends, in counselling services for those with intellectual disabilities and with the help of experts who work with him on issues related to gender nonconformity – all of which is coordinated under the guidance of a paediatrician who understands how his FASD and co-occurring conditions all inter-relate. He was diagnosed at 10 and in the time since we as a family have learned alternative strategies via our interactions with experts and others with lived experiences via online and in-person support groups. We have tossed traditional parenting out the window and have tried to create an environment where our little one can relax enough to begin to grow. It has taken years and years to get here.

While each day of our holiday had its challenges and while we have a long way to go, the point is – we did it. We listened. We worked hard. We adapted. And yes, we did it!

I can’t tell you how I want to sing that from the rooftops, now, before we settle back into our less-than-perfect existence. I wish I could send that message back to myself a few years ago, for those days when I thought it would never change. When I looked into the future and all I could see was doubt and fear as to what the tomorrows might hold for our little one.

I want to send out a message to others who might be feeling depressed, like I was then. I want to say, “Hang on. Rattle the system. Make the professionals SEE your child. It’s not easy but it’s possible. If we could do this, so can you. Stay strong. Stay positive. Feed the future with your positivity and belief it can come true. Find a network. Build your support system. Dig deep. Celebrate the successes. They WILL come.”

Special needs parents up and down the country are struggling right now to keep their heads above water, to stay optimistic in the face of some of the most daunting days anyone can experience. There is too little available for children with additional needs during the holidays, too little respite for families who are trying to do the right thing but who need help. For a long time, our son was able to fit into other mainstream summer programmes but as he is getting older the options are less obvious. Facing the lack of an appropriate summer programme for someone with FASD, we are creating a pilot project with some related organisations to see if we can change that too.

What makes me really sad is that the few services that exist function mostly on an emergency basis and too many with FASD are denied access to these services. Our son who had been running away from home, playing with lighters, refusing school, destroying his room and his belongings has now learned some coping strategies and those behaviours are no longer a part of our lives. But he’s still just 14 and there is a long road ahead. Now that he is at a calmer place, surely NOW is the time all these therapists and experts should work more intensively than ever with him to teach strategies for a lifetime – now, when he’s most receptive to learning them. We beg them, please don’t spit him out because he is coping better. His brain damage is not going away. Every bit of support, every coping mechanism he can learn will help him contribute to society in ways big and small. His voice matters in a world that too often refuses to hear or see people who are different. Help us help him.

Everyone is focused on child mental health, at least that’s what the sound bites say. As part of that, let’s really focus on making support available over the long-term for those with FASD. The laughter of a child on a holiday is such a basic rite of passage, but for some it is hard-earned and to be celebrated. Thanks to all who got us to this place and here’s to better tomorrows for all who are struggling to make these summer days shine. The sands do shift, but still it is possible to find alternate routes. And to find joy along the way.

(This post also appeared 15 August 2018 in the Huffington Post UK under the title, “Shifting Sands and Special Needs Parenting”.)

 

 

Gender Identity, FASD and Parenting in Uncharted Waters

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By SB_FASD

What can you say to a bright soul who just simply ‘is’ – beautifully, wonderfully ‘is’ despite being pressured by the world every day in 10,000 ways to conform, to fit in, to adapt? What can you say to a child who doesn’t see the boundaries others hold dear and whose perspective is governed by a strong and vibrant vision of what is right for them?

What do you say to a toddler who puts pyjama bottoms on his head for ‘hair’? Who models himself after a long list of female performers from Cher, to Hannah Montana (but most definitely NOT Miley Cyrus), to Sophie in Mamma Mia, to the ever-charming Miranda Sings? What do you say to a child who for years yearned for a wig, who made anything he could find into a headdress that would have hair hanging down his face, who asked for night caps that he pretended were wigs, who asked you to crochet fake wigs, who would cry and sometimes rage when he could not go out looking like he wanted to look? What would you say to the kid who in every charity shop you went into headed straight for the skirts, seeking the ones that flow and twirl, preferably pink and possibly sparkly? For years and years. This didn’t just crop up. It’s been constant and steady.

We didn’t get it. We redirected. We had a stock of ‘dress up’ clothes in the house for performing. But still the displeasure and unhappiness and sometimes meltdowns as we were leaving the house – the sneaking ‘hair’ into school bags, the wearing sparkly clothes under more boring clothes.

We were scared. Our son has a brain-based disability. He has a Foetal Alcohol Spectrum Disorder (though we didn’t know that until he was 10). He is at risk out there in the world. We worried he would be simply too vulnerable if we allowed him out of the house dressed the way he wanted to dress.

And then in the post-Brexit-vote days a young gay man was brutally attacked in our town by six people. Yes, we were reminded we have a reason to be scared, to want to protect our son.

But over time we realised that the best protection we could give him is a positive self-image. My mom used to teach me to cross roads confidently and to “smile like you own the world.” “If you hesitate or look like you might run off in a different direction,” she said, “that’s when you get run over.” We lifted the protective dome. Our son at nearly 14 now walks through town dressed in outfits he chooses. Because of his needs he’s never alone – we are always there by his side, staring down anyone who chooses to give ‘the look.’

The mainstream discussions about gender fluidity, gender diversity, trans issues (whatever words are the right ones to use, I am still not sure) seem to not have a place for a kid like our son. We see some really insightful and courageous young people pushing forward their rights to be who they are – these young trans leaders are bright lights in a world that is all too grim.

I am thinking now of a whole forgotten group of others who struggle doubly – people who are gender non-conforming who can’t really understand in what way they are different let alone find words to describe how they feel. Kids who due to the way their brains are wired simply can’t comprehend why people have a problem with them, who don’t understand the sexual or social connotations that others might be tossing their way. Professionals tell us this is in fact a protective factor for the gender non-conforming young person with an intellectual disability. But they can’t really know the desperation of wanting to protect your child – the impact of parental hyper-vigilance on your health and the health of your relationship with your child.

Experts believe that the alcohol that flooded our child’s system while he was in the womb likely impacted parts of his brain that influence hormones and gender identity and the way he understands these things. FASD is itself very under-studied and this aspect is even less so. We are out there in uncharted territory. (We have started a closed Facebook support group on FASD and Gender Identity to try to fill this gap.)

But to the greater world, as a parent in this unknown space you might as well be from Mars. It’s a double stigma. It holds you back. You’re already judged as a special needs parent (someone recently said to me “IF FASD exists…”) and on top of all that denial, people project onto you their own hang-ups about issues related to gender. You try to sweep away all the criticism before it comes. You don’t post pictures of that outfit or an angle that might show just how long his hair has grown. Not because you are ashamed, but because you really don’t have time or mental space for other peoples’ baggage. Your every moment as a special needs parent is spent trying to keep your own home in balance. You’re exhausted. And muddling through. Doing the best you know how to do in this land far, far beyond the traditional rule books.

Let’s face it. The lingo and even some of the politics of the LGBTQ+ community are intimidating. You don’t want to get it wrong. It’s too important. There is no way in the world your little one can begin to access and comprehend the nuances represented by these different terms. No way. At least not yet and not likely before puberty comes through like Miley’s wrecking ball. Just the concept of possibly using different pronouns would be nearly impossible at this stage for your little one to understand. The impact would be impossible for him to gauge since those with FASD have challenges linking cause and effect.

You dwell on issues related to informed consent. It’s a minefield. You have a child whose emotional and social age is half their developmental age. You learn about theory of mind and discover that the reason why your child has a remarkable ability to be who they are is that they are not developmentally able to fully understand that different people experience the world different than they do. You learn from experts that your teenager does not have the same concept of what it means to be ‘a boy’ or ‘a girl’ that others have. You start to worry that your child’s physical clock is ticking much faster than their social clock.

Puberty hits and your kid with the angelic voice literally stops singing because his voice cracks. Your heart breaks.

You are asked by a leading psychologist, “Who’s got the problem?” He’s saying to you that your child is confident and comfortable with his gender non-conformity. He shows you pictures your child has drawn with happy faces and love hearts. Your little one seems happy in himself. That’s what you want as a parent. You hope those smiles survive when facial hair grows. You desperately wish that voice will sing again and you’re simply not yet sure it will.

People think it’s the parents and carers pushing their own ‘agenda’ onto their child. They tell you what they’d do. (Save your breath, if it was as easy as cutting his hair, we’d have done it.) Anyone who knows me knows I am anti-lipstick, anti-heels, anti-sparkle (though I have to admit my repulsion for sparkles has weakened considerably in face of the onslaught). This is NOT me pushing an agenda. But by gosh if I have to, I WILL spend hours watching YouTube videos of various hairstyles and help practice them on the styling heads we now have under our roof – because the thing is, a child with FASD learns in unusual ways. A lot of it is multisensory. If the child has a particular interest, it really helps to develop that, to use it as a bridge. To connect. It’s doubly hard to know at what point this is an obsession versus something deeper. For years we thought the hair and skirts were about sensory needs. Most likely it’s an unknowable combination of factors.

Honestly, I have no idea where all of this is heading. We are pushing no one anywhere. We would rather opt on the side of allowing our child informed consent, even if that means moving conservatively. We understand that perhaps might be compounding anxiety and limiting future options unnecessarily.

But then we hear, now that he’s in a supportive specialist school where staff have specific Stonewall training in these issues, that our child is a leader (their term). That he is helping other children in being more comfortable in their gender expression. That they have never had a student with gender identity issues as comfortable with themselves as our little one is. We get comments on school reports like, “he has managed to express his colourful personality” and “he is not at all afraid of thinking outside of the box.” We feel relief that his protective shield is growing stronger.

Just last week his school went to see “Everyone’s Talking About Jamie.” We were nervous about letting our son go on this trip since the theme deals with a teen who dresses in drag – possibilities we have not discussed yet with our son. At the end of the day, the kids came off that bus in a group. Our long haired, bright eyed, beautiful son was in the middle of them. They were elated. They were all together. And he blasted the theme music that night as he fell asleep. He was content.

There is everything to gain from being open to our little one’s magnificence. And by “everything” I mean keeping that sparkle alive in his eyes. That is the goal. Keeping our guy alive and full of life. His life. His very own unique and awesome life.



For information or support:

Stonewall has some great resources, including for schools
Gendered intelligence 
Mermaids
FASD and Gender Identity Facebook Support Group (you will be asked to fill out some questions before becoming a member of the closed group)