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?

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”.)

 

 

Holidays Are Not Vacations

Blog_Holidays

By SB

“Holidays are not vacations. Try not to confuse the two.”

This advice was passed along to us at some point way too late in our parenting adventures. We are still trying to absorb this wisdom.

We have been there. The over-scheduled holidays. The overstimulating holidays. The attempting to act like all is ‘normal’ holidays. The ‘we-really-need-this-so-we-are-going-to-try-this-even-if-it-kills-us’ holidays. The ‘ready-to-go-home-after-two-days’ holidays.

Every kid loves to go to a theme park, right? Every kid loves to play at the beach, right? Every kid loves the excitement of a road trip, right? I did when I was a kid. They were some of the best memories of my life. I want our children to have those memories too. And so goes the record in my head.

Until there you are, too many miles down a highway with a child in full meltdown in a car. Kicking, screaming, throwing things. You stop at the first stop you see – a place advertising a garden café…and then you see this garden doesn’t have grass but little stones. Your 12-year old fully dysregulated child picks up hands full of them and you really don’t know what to do as they are sailing through the air while other customers stare at your horrible parenting.  Or there’s the time you stop because driving is no longer safe and your little one is walking with purpose along the side of a highway, refusing to get back into the car, for miles with your husband slowly creeping the car forward behind you both. Or the time when he threw a big rock so hard outside a 400-year old cottage your extended family members had kindly rented, hitting your husband in the face and you had to run off after your child to make sure he didn’t get lost in this new place while your husband was still bleeding.  Or the time he went missing at a cliffside theatre and you found him, just moments before they called the helicopter search team. He was in your car blasting music and rocking – he had found a quite space and was using calming techniques you had taught. People wondered why he was not punished that day that scores of people were looking for him. You were just glad he was alive and you let him see you were proud of him for finding a calm space.

These are just a few snapshots. For those raising children with Foetal Alcohol Spectrum Disorders, most of us have these stories. FASD makes it hard for our little ones to adapt to new places, to process all the alien input and to understand the new expectations. They become overloaded by sensory input and anxieties to a point where they simply can’t do it anymore. And then wham. We have liftoff. Or for some, it’s shutdown.

I keep remembering a work trip I took to Japan. I was traveling by train, but something was wrong with my ticket. I got stopped at a gate and there was no one there who could answer my question – none of the signs were understandable to me. No one in authority spoke English. It was all completely confusing and overwhelming. The only thing that kept me from panicking was one person I knew who just waited for me on the other side of the gate. He said he wasn’t going anywhere until he knew I was okay. He didn’t care if he missed his train. He reassured me it would be okay. I remember that day and I try to be like that for my son when I know he’s having trouble. To let him know I am there and waiting for him, to reassure him this moment will pass, we’ll find a way forward.

Children with FASD need structure. They need to know what to expect. One year, long before our son’s FASD diagnosis, there was a blackboard in one of the cottages we rented. Our little one started writing a timetable each day in chalk, just as if we were in school. He was showing us what he needed, just as he always has done. We didn’t get it. We didn’t listen to his needs. We had a truly dangerous car trip one day during that holiday, where he kicked so hard he almost made contact with his dad’s head as he was driving. Now we print out pictures of where we are going. We show him on maps. We go back to the same place. We will never repeat the disaster of the trip where we stayed in five different places so we could do touristy things that we thought would be fun. How wrong we were. Of course, cash-strapped, we were only too aware that we were paying hundreds of pounds for the disaster that was unfolding. That fuelled our stress, his stress, the negative cycle. We needed to learn to slow down. To keep it simple. To take cues from our son with FASD.

We have finally learned just how anxious our son gets in a car. Now that he has the words to tell us, it’s humbling. No wonder he was melting down in the cars. I would be too if every unexpected swerve, every beep, every light, every car heightened my danger alert, if even the direction of the windscreen wipers mattered to me. This year, we are trying something new. Every other family member has already driven to our destination at the tip of Cornwall. Tomorrow, my son and I will take the train.

It will either be the best idea ever or it will be a disaster.

Ever hopeful, I am counting on a win.

We also for the first have one of his younger friends staying with us, so hopefully it will help to have someone to play with. Her mum is staying with us too, someone who ‘gets’ our son and his needs.

I also did something a bit bonkers. I have chopped my hair and it’s dyed bright pink and blue. I was too hot on too many London commutes. I thought this might be good for a bit of fun for the holidays. But walking through town today I realised there is a side benefit. People are staring at me and my iridescent hair and ignoring my son’s long hair and skirt for once. Interesting indeed.

This morning, while the first pictures started appearing on social media of dad, brother and friends at the beaches in Cornwall, we were sitting in a familiar local café in our hometown. I was trying to ignore the side glances that my son didn’t notice. I was thankful that at least he was eating, even if it was a burger at 10.00 am with cheese on it, which he’s not supposed to have due to a milk protein allergy (I weighed the slight tummy upset versus the protein boost and took a chance). And as we chatted, the anxieties started pouring out. He doesn’t want to go. He wants to stay here. He’s been to this one town in Cornwall too many times. There are no shops there. It’s boring. He needs to stay in another place. The last place he stayed in Cornwall with his school had ants in it. He’s never staying there again. We need a schedule. How are we getting there? Did Dad bring his stuff too? Am I sure? How are we getting to the train station? That’s too long on a train. Let’s just stay here. What about the dog? What if she’s lonely. And on. And on. And on.

Honestly, what I really need is a vacation. With umbrellas in icy cool drinks. The sound of nothing but lapping water at the pool’s edge. Sleeping late. Going nowhere. Just silence. Peace. I really need a break. I admit that.

But I am still glad for a holiday. I know there will be moments of exhilaration by the sea. I know that forbidden Cornish ice cream will bring a huge smile to our son’s face and that might just make up for the sensory discomfort of sand between toes and gooey sun cream (and tummy upsets from too much milk). I pray (even as I am not the praying type) that this time we will have fun. And maybe, just maybe as a family we will relax. I am hoping I come back replenished.

What I will never do is blame our son if this goes wrong. Because it will not be his fault.

He has already expressed his worries and his concerns. There is no doubt, this holiday is about me, about us, our needs and our desires. It is simply not fair to blame him if he is unable to cope. I will give him every tool I know how to help him, but this…this is on me if it goes pear-shaped.

And if it works as we hope it will, it will be because he has excelled himself with immense effort and increasing skill at self-regulation. If we do indeed have a good holiday it will be due to the understanding of all around us, to the structure we have put in place to give him the best chance to succeed. It’s not just going to ‘happen’. This new approach has been in the planning phases for two years, since our last holiday and all the work we have done over many slow days trying to build up to a place where he is able to state his needs and suggest strategies to cope. It’s a work in progress.

Stay tuned.

And if you see someone on a train or a plane or in a cafe or convenience station who is struggling. Just keep walking. And give them all a little smile of encouragement.

But if the mum has bright blue and pink hair, please stop and say hi.


 

Check out this Oregon Behavior Consultation video for tips on preparing for holidays for those with FASD. They also have a holiday planning worksheet. It’s focused on winter holidays, but the advice is golden for any time of the year.

 

 

 

Begging for Support

Blog_BegBy SB

There have been times in this FASD journey where I have literally been reduced to begging for the help that our son deserves and needs. Yesterday was another such day. Some boxes had been ticked somewhere in The System. I had been feeling really good for the first time in ages at the support that is in place around our child. It’s been working. It makes sense. The people involved are getting to know each other. There is a common language developing across the teams.

So, of course, without warning, yet another service had decided that because our son was doing well enough (despite having been referred here not long ago due to a series of crises) and because he had had x number of sessions, it was time to boot him out of their system.

Hold on. Wait? What?

Oh no you don’t.

Not yet.

Mamma Bear woke up and with the nicest smile she could manage laid out 10,000 reasons why this was not a good idea. We’d be happy to put all this in writing, of course, not as a complaint, but as a compliment, she said, because your service has made such an important contribution to our son’s wellbeing and because we know statistically he’s just entering the hardest years for those with FASD. You matter. This matters. Too few people out there ‘get’ FASD. We shouldn’t have to waste key NHS resources to help others who might not be familiar with our family and our son’s needs get up to speed on these things. Too often for people with FASD, it takes years for the supports to be finally put in place. Then, when they start working, they are removed. We don’t want that to happen to our son at such a critical time in his life – he’s just turning 14. We could share the stats with you if you like of the addictions, the problems with the law, the homelessness, the vulnerability he is facing as teen with FASD preparing to enter adulthood.

Please, please don’t discharge him from your service. Look – it’s been working.  We just shared with you several examples of how what you have taught him has worked. But let’s be honest, this is work you would normally do with a much younger child. What would normally come next? There are a whole host of other skills he will need to learn and master, other conversations he will need to practice. You can’t honestly believe that we are out of the woods and no other crises are likely to come up?  This service has the ability to see him until he is 19, why discharge him now?  Let’s spread out the sessions…just keep him on the books in case something else heats up. C’mon, let’s think this through.

Please, he needs you.  We need you. Not because what we are learning with you is rocket science, but because he’s now used to you, to this. It’s working. Do you need me to lie and say it’s not? He has a language he uses here. Why should he have to spend a year or more waiting for a different referral, building trust and a way of interacting with another therapist? It makes no sense. Sorry, we know you are not the one who makes the rules, but please don’t discharge him until we can speak with whomever it is who does.

I know I am begging. I am shameless about this. We are literally fighting for our child’s life. I don’t say that lightly, I mean it. We have a few years here to get this right – to give him the tools and the words he will need as he turns toward adulthood. I can tell you stories of people with FASD who we know who didn’t have support and who had to overcome things we don’t want any young person to have to cope with. This support and help matters. How is it possible that a young person with a brain-based disability who is vulnerable in many ways, who has receptive language problems, who is grappling with some of the major issues of puberty magnified by an intellectual disability that makes these years even more of a minefield could NOT qualify for your help?

Absolutely we can help identify specific goals! Absolutely we can work with you on a targeted plan. Absolutely we agree it would be good to get all the professionals around one table to make sure his transition into adulthood is getting in place now while there is time to get it right.

…and so it went…

Another reprieve. Sixteen more weeks. We calculate in our head. This will get him at least into Key Stage 4. This gets us well into the new school year. We will see what happens as these coming months unfold.

For too many, today might have been the end of the sessions. For too many, they don’t even make it this far.

Why is this such a battle all the time? This, in a country that says it is trying to tackle child mental health in a serious way while simultaneously making it so hard to access services?

How is it not a better use of resources to give people skills to be able to help them cope with a lifelong disability rather than waiting until a crisis hits, at great cost to the child/young person and the family? How is it not worthwhile to do more training for all professionals in this condition that experts believe affects more than autism?

How can we possibly leave people with FASD and their families struggling on their own when there are known strategies that can help?

Caring societies are meant to care. They are meant to open doors, make the way easier for those who need an extra hand. They are supposed to enrich the lives of those vulnerable individuals who deserve support, encouragement and understanding.

Not slam doors in the faces of those parents seeking help for a struggling child. Not tell someone whose child has a brain-based disability that it’s their parenting and not compromised brain wiring that is causing the problems. Not kick students out of schools because the educators haven’t educated themselves on the executive functioning and cognitive issues that occur with FASD. These last two haven’t happened to us but they certainly do happen all too often, in too many places.

Yes, today we had a small victory in clinging onto a service that does give us strategies. But we really shouldn’t have to beg.

Seriously, society … we shouldn’t have to beg.

 

 

Always On – Hypervigilance and FASD

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By SB_FASD

Hypervigilance is a term that keeps cropping up lately.

I first used it in consciously last month in a meeting with two therapists where my husband and I were discussing our son when he wasn’t present. I was relaying a story about going through charity shops in the town with our little one with FASD. I was talking about how I feel the need to be hypervigilant to anticipate how to deflect the negatives that might come his way – perhaps due to how he is dressed or the way he might be acting. It’s like trying to extend a big protective bubble around my son as he walks through the world, worried that it could pop at any moment.

Mirriam-Webster defines hypervigilance as “the state of being highly or abnormally alert to potential danger or threat.” Yep. That’s me.  It can be linked to post-traumatic stress disorders but that is not what affects me. I just live nearly all of every day in a super alert state, listening, anticipating, waiting, trying to deflect a negative outcome or some situation from spiralling into a fully heightened scene. An article, “Hypervigilance in Autism Parents” struck home for many of us raising children with FASD.

I do not relax. Or very rarely. I realised THIS is why I wake up and watch mindless TV in the middle of the night – it’s the only time at home when I can relax. Everyone is asleep. There is no chance of things going from zero to 100 at 3.00 am.

I am not writing this to complain. It makes me empathise. This feeling that I have is nothing compared to what my son experiences. Yes, I am constantly anticipating, analysing, assessing where things are and where they are going – living on edge of a possible meltdown coming from who-knows-what stimuli next. It is exhausting. It’s not a very nice way to be. How I would like to kick back my heels and sit in the garden with a good book and just relax. This is not going to happen. I’ll survive.

But my 13-year old son, he lives in this sort of state multiplied by 100 or 1,000 times.  His anxieties are through the roof. At different times someone’s breath on a strawberry panics him. A buzzing fly or a pan on the stove sizzling too loudly or a low-petrol reading in the car or whatever it is at that moment – things I do not even notice – can raise his internal alarms so high that he cannot contain himself, let alone explain his fears or his worries. His behaviours escalate and he loses all impulse control. It can be quick and forceful and things can be smashed in the process.

He has been getting some counselling lately that is helping. He’s working with therapists who help him have the words and awareness to identify how he is feeling, to spot when his anxieties are increasing, to put in place strategies for each of those different stages. Where once he only knew two states of being – happy or angry – now he has been learnings there are steps along the way and things he can do (and that we can all do) to help him move down that ladder.

It’s not rocket science – and it is absurd that these sorts of tools are not made more available early on when a child starts showing these sorts of problems. And it is really tragic that many if not most families affected by FASD are not able to access these kind of therapeutic settings that can really change things around.

This week, I have been learning that the therapies help us as much as they help our son by giving us all a common language.

We’ve had a bit of a rocky road this week. Our son’s school went off timetable for a special “Arts Week.” They are doing absolutely amazing things. But it pushed our guy to the edge, if not over. We had a car ride to an evening event at the school where he was starting to become dangerous – the first journey like this in a very long time. In between cursing and bad language and taking off his seat belt and throwing things, he was telling us “I can’t handle it.” “I’m too tired.” “I just want to go home.” “I want to play with slime, that will help me.” In the past we would have kept going, pushing him too far. This night, we honoured him – we listened to what he was saying. We turned around. We went home. He played with slime. He danced in a body sock. We didn’t have a meltdown.

I felt oddly good.

What’s the point of encouraging him to use his words to tell us how he feels if we don’t act on that and show him that his opinion and feelings matter? He identified his feelings, stated his needs, came up with a solution for how to self-regulate. Progress!

The next night, again after a day off their normal schedule, our son was becoming dysregulated at home. I was frustrated, tired, alarmed that things were starting to fly – always worried about breakage, but also fighting that sense of disappointment and fear for the future that bubbles up when I am feeling weaker than usual.  I lost it. I heard myself saying, probably too loudly, “That’s enough! I am stressed. If I had a scale of 0-6 like you do, I would be a 7 right now. I am going to explode. I need quiet. We are both going to sit here, quietly. Don’t say anything. Just sit!”  And you know what? He did. I ignored what others might have interpreted as smirks, because I could see these facial expressions were signs he was nervous and trying to register this unexpected new information. I sat there on his bed with him without either of us saying a word for about 30 minutes – he was on his phone, I was on my computer. Every once in a while, he’d move his leg a bit closer to mine for a scratch. And the scene that had been horrible became calm.

I sat there thinking about what had been staring me in the face – we need to use these tools too for our own stress levels. To build a common language with our son. Why should he be the only one in the family with a stress chart with identified strategies for how to cope? He needs a guidebook for how to help us as well. He is the one with trouble reading others – of course he needs a road map too. I can’t assume he understands instinctively what I am feeling.

I have been learning more about theory of mind. It’s tied up with developmental stages – when a person begins to understand that other people experience the world differently than they do. Some people with various disabilities struggle with this.

I remember our son on the phone when he was smaller, holding up something that my husband couldn’t see on the other end of the audio call – “Here Dad, it’s this one.” One of my favourites was “No Mummy, not there – scratch where it’s itchy.”  He didn’t get it that I couldn’t know where the itch was. Lately I have been increasingly direct with him, saying things others might think are “obvious”. “I am tired and I am going to bed now. Please don’t ask me again tonight for another snack.” Telling him what I am feeling and therefore what I expect from him is working.

I have been taking cues from adults with FASD who find help in mindfulness. It helps me with the hypervigilance to recognise that I have the power in a moment– any moment – to find something to focus on, if only for a short time, to help me ground myself, to slow my breathing. I hope our son will eventually learn more about these techniques. But in the meantime, I can invite him to come sit by the dog and feel how soft her ears are. I can comment on how soft the breeze feels on my face. Or point out how very blue the sky looks. Building blocks. Little moments lead to big breakthroughs. Step by step. I believe we have to see progress and celebrate it, no matter how small.

As I am realising I am in a hypervigilant state most of the time, I am using this understanding to help me better understand my son. I am trying to use the tools we are learning to help him understand not just himself but others too.  But I guess I need to do more to understand me too and what I need. So, yes, the word of the week is “hypervigilance.”

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Some additional resources:

Emotional thermometers and other printable resources from here (there are lots of interesting resources on this site):  http://do2learn.com/…/SocialSkil…/Stress/StressTriggers.html

This ‘brain house’ model is also helpful to teach children about the ‘upstairs brain’ and the ‘downstairs brain’: https://www.heysigmund.com/how-to-teach-kids-about-the-bra…/

 

 

 

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Airing Dirty Laundry

DirtyLaundry

By SB_FASD

I know I’m weird. I have never really minded doing the laundry. I was taught early and well to take great satisfaction from jobs with clear results. It starts off dirty. A few steps and voila! It’s clean. I can see the proof that I accomplished something. In fact, few things are more satisfying than seeing clean-smelling, neatly folded, bright and tidy clothes tucked into drawers, everything crisp and orderly – proof of course that I am a Good Mum.

I know you can see where this is going.

In our house, thanks in large part to FASD (though, to be fair, not entirely due to FASD), laundry is not that simple.

First, there is the volume. A sensory-seeker who loves mud and slime, who might chew on clothing when under stress, who spits out foods that his body rejects and who might not be able to contain the need to wipe a runny nose until finding a tissue naturally generates massive amounts of laundry. There are up to four changes a day due to continence problems that arise from food allergies and other issues around digestion/food, generating laundry that needs to be addressed daily and urgently and without shaming or blaming.  There are of course also favourite stretchy tops and soft trousers that need to be nearly always available.

I try to keep a smile, even as my heart sinks watching the stack(s) of laundry grow.

Attacking this gets complicated.

Our son has some autistic-type traits directly related to his FASD – damage caused to his brain by exposure to alcohol in the womb. He has always had a very special and intense focus on washing machines. I get it, I really do. What’s not to like? The whirring and spinning, bubbles and sounds can be soothing and captivating. Our guy used to sleep in a pushchair parked in front of washing machines (which in England are front-loading and have glass windows).

His interest has deepened. He has become an expert of sorts by watching endless hours of YouTube videos and playing with his armada of toy washing machines which he has begun taking apart and putting back together again with varying success. When he goes to one of his favourite destinations – Currys – he discusses the technical specifications of most top brands with the staff. Armed with that kind of knowledge, he gets nervous and anxious when our ancient washing machine at home rattles a bit in the spin cycle. He worries it is ‘unbalanced’. If he sees a ‘suds lock’, his anxieties erupt if we don’t shut down the machine. He pleads with us to buy a new one. He knows which will fit the space we have.

Once upon a time I might have thought I needed to help him ‘get over it’ – to push on with my own schedule and just do the laundry despite his anxiety.  But we are the ones who had to learn. FASD is brain-based. To make it more likely that he can cope with even seemingly mundane things, we have to adapt the environment. In the FASD community this is a bit of a mantra, deriving from the ‘neurobehavioural’ approach made popular by Diane Malbin.

So this raises logistical issues related to timing – if we do laundry when our guy is slightly dysregulated, overly tired or anxious it may lead to a meltdown (although the line is never exactly clear, as sometimes watching the machine can help soothe him).

Then there are practical issues – we need to hang the laundry to dry. Given England’s usual wet skies, that means this laundry is hanging on drying racks in our dining room – making the spaces more chaotic than they already are, which is not ideal for someone with FASD. It also limits the number of loads we can do on a given day (our dryer, never overly cooperative, has died.) On a given day you are likely to see half of our dining table covered in folded laundry.

Which leads us then to the storage issue. Our guy cannot organise himself. His most used clothes are in plastic crates so he can see them and access them. When he looks for something, it all gets jumbled. I could be angry about this, but there’s no point.

Others might think I am enabling ‘bad habits’ by not forcing him to clean his room himself. But while he may be 13, like many children with FASD he has a social/emotion level of about half his age. No, I have no intention that our son will always have a room that looks like this. But in a world where getting him to school and keeping his anxieties down are the top priorities, I have learned over time to priortise my own goals. Of course, the tidiness of his room matters because it helps him to be in a calm and orderly space. We do try to keep it somewhat manageable for that reason and I take lead responsibility on this, but not so I can fulfill my maternal dreams of nicely stacked, sweet-smelling laundry. I do it for him.

But in the end, who cares about our laundry? Why am I writing this?

I believe that alternative parenting needs to be better understood.

People need to know there are layers upon layers of complexities to parenting in houses affected by FASD.

It’s important to look a bit deeper when someone is parenting in a way you find so outside of your box that you are tempted to criticise. You might just see some magic happening.

Whether or not I chastise my son for tossing his socks after he takes them off, whether or not I turn a blind eye to that smear on his sleeve, whether or not I allow a stack of soiled laundry to grow in the bathroom and wait until our son is asleep or out of the house to do the laundry – these are choices based on strategies that might not be apparent to the casual viewer. Of course I see these things and yes, despite the above, I still suppress guilt every day about it all. I do want to be a perfect mum. I do want my house to be perfect – or at least, non-toxic. I admit it, I want stacks of nicely folded sweet-smelling laundry to be IN every drawer in our home.

A little while ago, my son reminded me some clothes in the washer were done and needed to be hung to dry. The he asked if I had any laundry he might do. We agreed he could wash a sheet from his bed. After he loaded and started the machine, he came to me and expressed concern that there might be too many suds. I told him if that made him anxious he could go to his room and I would watch the machine for him. He did. He went and got himself changed and dressed (he was also making slime and has a cold, he realized his clothes needed changing). Most ended up in designated piles. He is content. We have had no meltdowns, no harsh words.

Perhaps to the outside world none of this is remarkable. But in that last paragraph there are many positive signs for the future. During my first week of university I met a man from a large family who had never used a washing machine before in his life. My son with a learning disability knows how to do this at the age of 13. He expressed to me his worries, we agreed a strategy for how to deal with them and avoided the worst outcome of a potentially spiraling situation. There can be glimmers of huge progress in the simplest of things, when we stop to see it.

We can’t change some things around here. But we can change how we react to them. We can adapt and learn how to support our son via his interests to become as independent as he can be. We have had to step right outside of that box of expectations that we had ingrained within us and we have allowed our concept of parenting to expand. We are learning to give it time and patience. We are trying to have more fun along the way.

It really doesn’t hurt anyone or anything to indulge our son in an extra spin cycle or two now and then. Who knew?

He did.

He’s been showing us all along what he needs.