The Run Up To Christmas is Difficult for Children with FASD

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By MB_FASD

Christmas is coming, the goose is getting fat …. And sadly the period of greatest potential for multiple meltdowns with it.

The run up to Christmas is a really difficult time of year for children with an FASD. Schools go off timetable, so routine vanishes. Excitement builds as the holiday approaches. Multiple events pile up, one after another, in a confusing and seemingly relentless fashion.

Kids just cannot cope. Their senses can be overwhelmed every time they go places with lights and music. Kids who find it difficult to assess time can struggle with the weeks and weeks of special events, wondering why Christmas hasn’t come yet.

Worse, children who struggle to comply with all that is required of them in school, whose symptoms are treated as bad behaviour at the best of times by those who fail sometimes to even recognise that they even have life-long organic brain damage, find themselves wondering if Santa understands they aren’t being naughty and whether they’ll get presents because so often they are told they are being bad. And bad kids don’t get Christmas presents.

So, even where our youngsters manage to hold things together outside the home, very often this time of year brings an increase in meltdowns, school refusal, tears, sometimes increased violence and angry words. Friday night this week brought a broken phone screen as frustration built up, with concern about spending next week off timetable a real factor.

Things become very fraught for all. It can have a horrible effect on families, and for extended families who don’t get FASD it can be completely inexplicable. Accusations of bad parenting can fly, which just increases tensions and perpetuates the cycle of misery.

So, how to avoid this so far as is possible?

Well, it isn’t easy. But there are ways to reduce tension, ease anxiety and make Christmas and the New Year easier to get through.

We start from the point that we know our son best, and from experience understand what we need to do to help him be able to get through each day. We listen to him, and this has got easier as he has got older and is able – at least sometimes – to tell us what he needs in words to be calm and happy.

We build Christmas and the New Year around him. We do everything we can to lessen the sensory burden. We do everything possible to reduce stimuli and anxiety. We recognise our son’s disability and the needs this means he has. We give priority to meeting those needs.

This means we miss out on things. If he can go to the pre-Christmas carol singalong, then we go. He does enjoy it (he loves singing) when capable of accessing a crowded public event.

We do decoration to the extent he can cope with without becoming agitated, and when he can manage it. Sometimes that means lots of decorations, sometimes relatively few. A couple of years ago he wanted to keep the Christmas tree in the living room all year long. So it stayed (he was right, it was kind of pretty). We had already bought an artificial one as he became extremely anxious as time went by and needles started to drop.

Presents only appear on Christmas morning. Temptation would be too much if they sat under the tree for longer. Which means we stay up very late to make sure the kids are asleep as we await Santa’s arrival. One Christmas a sleepy older neuro-typical son appeared at 1.30am, just as Father Christmas was finishing. Luckily he was so tired he could be guided back to bed or we might well have had presents in the middle of the night. After all, Santa had called.

Christmas is for kids. In this case, we build Christmas Day around our son. Presents early. The kids can stay in pyjamas and play with toys and games. No pressures at all. Food and drink can be eaten where they play.

We do go for lunch and family presents with family. We’ve learned over the years that we need to keep this shorter than we otherwise would. And if our son needs to be in another room listening to music or playing on his phone, then that’s where he is. He can’t manage to sit in a crowded room for a long time, or stay still for so long. It’s better for everyone when we accommodate his needs.

In the end, it’s simple. Do what you know your kid needs to get through the holidays happily. Cut everything else out.

And while this is about children with FASD, it’s much the same for adults with FASD – they too need accommodation, support and understanding. Inclusion is more than just inviting someone along. It means helping to ensure all are able to access and enjoy the fun.

Wishing everyone happy holidays and a wonderful 2019.

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For some great advice, see this video, “Hark, the Holidays Approacheth! (Preparing for and Avoiding Behaviors During Holidays)” from Oregon Behavior Consultation.

Shifting Sands

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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

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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.

 

 

 

Crunch Time – Beyond Broken Doors and Dreams

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This piece also appeared in the Huffington Post under the title: “The Moment You Reach Breaking Point As A Parent

By SB_FASD

There is a certain sound when something hollow gives way in the face of force. A crunch and a silence that leaves us a bit stunned for a moment. We sit there, frozen, as the knowledge sinks in that there’s no going back. There’s only forward from this spot.

Parents with children with Foetal Alcohol Spectrum Disorders and other disabilities are often familiar with this sound. Doors, walls, toys, electronics. Spirits. Dreams. Hopes. Things cave in when under enough pressure – whether it’s quick and impulsive or constant and unrelenting.

We are faced with big and small moments where realities compress down into one critical instant. And we are left with a choice of what do to when we realise something has broken – around us, within us.

I was standing in that space last night. It has been a difficult few days. It’s a school holiday. It’s never easy when we go off-schedule, especially when combined with other family and work pressures. Resilience is low.

England’s relentless gloomy weather lifted for just a while. We were trying to be outside, active. Maybe we tried too much. It doesn’t matter how we got there, it happened. It will happen again.

I had a choice. I said something unkind. I could lay out the reasons – how after hours and hours of our son teetering on dysregulation my own tensions had ratcheted up to the point where I lost my filter. I think you’d understand. It even involved a dog with digestive issues. A certain person with sensory issues trod through the results and spread it across two floors and onto his bed. It ended up with the duvet being thrown down stairs, panic from too many bubbles in a bath and my inability when personally exhausted to handle multiple crises on multiple levels in one moment. It was fairly spectacular in retrospect.

I don’t even know for certain that my son registered my unkind comment. We certainly were back on solid ground not long after, once the dog was outside, the bubbles were tamed and the bedding changed. The floors cleaned. But that is not the point. I know what I said.

Maybe others have those things they have said in those moments. Words we cannot recover. There is no going back, only going forward.

So much is written about children with ‘violent’ behaviours. Our schools and our culture focus on stamping out ‘rudeness’ and ‘aggression.’ There is a great pressure on parents to raise children who conform, who ‘fit in.’ But some children don’t conform to societal rules because they cannot due to the way their brains are wired – at least not unless significant accommodations are made. It’s not because they are naughty.

I am pretty on top of this ‘alternative parenting’ concept and yet I still feel the weight of that external pressure every single day. Someone gives a funny look when we are out and our son – who is trying his hardest but is struggling – might use choice language. Someone frowns in disgust when they see our guy on a path, wearing some pink lipstick that was a give-away on a pop magazine, ignoring his joy while projecting her disdain. A relative who otherwise gets it writes in capital letters on Facebook that it’s time to cut our son’s hair that he has proudly been growing for a year. We watch TV shows full of happy families, see pictures in social media of friends on idyllic family holidays. Never mind exotic beaches, we can’t manage a meal out without a server having to bring us five extra forks because the ones at the table were all ‘bent’ – and by then it’s too late as our son is just not going to eat the sausage and mash we just paid for, no matter how hard the parents at the adjacent table stare at us. Yes, that was all part of our yesterday. Pressure comes at us from every direction as parents of a child who is different. Teflon skin apparently has its breaking point too.

Once something has given way under such pressure, there is no going back. You can sometimes patch things up, but not everything can be ‘fixed.’

It doesn’t always happen with an explosive jolt – like a kick landing on an already damaged bedroom door, snapping off its lower hinge yet again (that was two days ago).  It doesn’t always happen with a swift snap – as when a new beloved hairdressing doll gets shattered when thrown down the stairs after a pretty amazing attempt at a fishtail braid gets muddled at the end (also two days ago). Sometimes the pressure just builds and builds outside us – like a diver going deeper and deeper. Even when they surface they just can’t breathe. The body has dealt with so much pressure for so long, they need help to function again in the ’normal’ (whatever that is).

I picture that tiny defenseless developing embryo or foetus, doing its best to grow in all its complexity, day by magical day in utero, being pressured by alcohol pushing and pulsing where it should never have been. I think of the billions of neural connections starting to fire away, being washed repeatedly in the womb by a torrent of teratogenic ethanol delivered straight across that placenta into the space meant to be safest of all. I imagine that alcohol sitting there for days, with mum not knowing that long after the sweetness or relief has left her lips, it continues to press its mark on a new person’s future, dissolving unknown potential, collapsing the full range of that little being’s abilities though thankfully unable to alter its magnificent soul.

Yes. There are pressures and forces outside us, within us that sometimes we cannot control.

Yes. There is no going back, only going forward.

We each have a choice. What do we do when ‘perfect’ is no longer attainable?  The door is broken. The words were said. The alcohol did its damage. We are here, now. Where do we go next?

A friend who is an adult with FASD has the answer for those who are lost, confused, who don’t know what to do when the big emotions flow. Where there are no textbook answers for what to do next, she says, “Ask yourself what would love do?”*

Love would forgive – others, ourselves, society. Love would hold close and not push away. Love would embrace and find peace. Love would forget about perfection and revel in the joy that can be found in the here and now.

There is always a way forward. In that space after something has broken, there is always a choice. Accept the reality. Breathe deeply in that pause. And then? Choose love.

 

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*With thanks as always to Savanna Pietrantonio, Hamilton (Ontario, Canada) FASD Parent & Caregiver Support Group and FASD: Flying with Broken Wings Facebook Support Group.

 

 

 

 

 

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Father Christmas Finds It Hard

Blog Father Christmas loves a teen with FASD

By MB_FASD
It’s hard being a Dad to a son with FASD at this time of year. You want him to be happy, but the run up to Christmas is stressful for him, and that makes it hard for us. How do you keep him going when the routine at at school is swept away, making him nervous every morning when he wakes up? How can I reassure him that his meltdowns, bad language and FASD-provoked behaviours don’t mean he’s on Father Christmas’ naughty list, with no chance of redemption., a constant fear he raises? I worry that his fears lead to a cycle of worsening anxiety and deteriorating behaviour. I have to do what I can to help reinforce the positive, help build up his confidence and self-esteem. But, oh my, the weeks before Christmas are not a good time.

This year, a whole number of new factors have been thrown into our volatile mix.

Back in late October our son had an operation on his right hand. He’s still recuperating from that. He can’t do gymnastics, or play in soft play areas, or go trampolining, or even go to a playground. He can’t do anything that risks putting pressure on the hand, or injuring it during this recovery period. These are his big physical outlets, things he does all the time. It makes life much harder when he can’t release his pent-up energy. He’s even too worried to go to swimming, I offered to take him last weekend and he wouldn’t go as “the Doctor has to say it’s ok”. He needs these activities to help him regulate his emotions and behaviour. I haven’t cracked this one. I hope as the hand heals his worries will pass and I’ll be able to get him in the pool again, most likely with one of his good friends who also swims like a dolphin.

Another thing we have had to be very engaged with is his school play. This isn’t an average school performance, his school has a performing arts speciality. The quality of their productions is fantastic. Everything is on a professional footing. His first one, last Spring, was a triumph for him and the school. He loved it. This time has been harder. He learned his lines, but wasn’t able to come out of himself to show what he could do in rehearsal. I read through lines with him a couple of times, but it didn’t help. He’s been reserved, silent, not responding properly to prompts. His anxiety is compounded by his voice changing as he goes through puberty. He’s finding it hard to hit the high notes. His voice sometimes cracks, and he hates that. He has perfect pitch, and is hyper-self-critical of anything that he perceives as less than his best. He hears imperfections we don’t hear. His self-confidence takes a hit when he thinks things aren’t right.

Worst of all, a shattering blow to the whole family, Sir Noel the Wonder Dog, our little Cavalier King Charles Spaniel collapsed and died of heart failure. I traumatised a young woman at the pet insurance firm by bursting into floods of tears when I rang to cancel the policy. Noel was the rescue dog who came to us a few Christmases ago. He was so much more than a pet. He was a physical comfort for our son at times of dysregulation and emotional disturbance or upset. He was a tool that our son used to regulate himself, projecting a voice onto Noel was a way for our son to tell himself to behave, to not be rude, to be nice at times when he was cursing or verging on meltdown. Losing his partner in struggles with FASD, one of his biggest comforts in life, was especially traumatic as it came at a time of year when he needed Noel more than ever. He’s still talking about Noel, asking questions, looking at pictures. Needing his Mum and I to provide answers we don’t have. Working his way through complicated issues like has Noel found my Dad in heaven? Are they going for walks together? Apparently, the answers are yes and yes. Noel is happy wherever he is. Our son found these answers for himself. I was a sounding board, nothing more, and his Mum did most of the work.

I have to keep in my head every day that these factors don’t stand alone. They compound to drive up levels of stress and anxiety until, facing overload, meltdowns become inevitable as sensory and mental processing is no longer possible. It’s my job, with the rest of the family, to keep all the stresses and strains to a minimum. To be there, a support, a facilitator.

The brain damage of FASD means that screaming, crying, hitting, throwing terrible meltdowns happen. When a child is overwhelmed by circumstance and simply can’t react rationally any more, meltdowns happen. Our son, in common with others, just gets overwhelmed. The flight and flight centre of the brain takes over. He can no longer control what he does. He needs absolute calm and a lot of time and space to let the thinking part of his brain take over once again. We have to give him that space, make sure he is safe, he knows we are there when he can reach out. Sometimes that is very difficult indeed, but it is what has be done.

At this time of year, these problems are his, our, norm. Those overwhelming moments come more often than not. In an average year the run-up to Christmas is enough to provoke meltdowns. This year it should have been so much worse.

But, it isn’t.

We haven’t escaped entirely. This afternoon dominos have been hurled across the room, and expletives have blistered the air. A few days ago I got in the way during another meltdown and got hurt. Repetitive swearing has been heard.

But these incidents have passed, and passed quite quickly. They haven’t led to big, all-encompassing and violent meltdowns that last hours. These episodes have subsided as quickly as they erupted. Calmness has returned, leg and foot rubs have been quickly accepted. Dysregulation has swiftly become self-regulation once again. Even with the distress at the loss of Noel the Loving, our son has been able to regain lost control. He’s been able to ask for support.

How is this possible? Well, partly he’s changing. He’s growing up. We have worked very, very hard at helping him recognise the symptoms of a coming meltdown. We have had help from experts for a couple of years in giving him tools to manage meltdowns. His aunt the actor helped him through difficulties and taught a technique to hit the high notes even though it’s hard. This made a huge difference when the nights of the play came around. What might have been a step too far just wasn’t. It was hard, right up to the last minute he was saying he couldn’t do it. But he did. Two duets were a triumph. And he spoke his words with feeling and expression. He was able to get to the point where he happily soaked in the applause at the end, even while he watched the snowflake lights spin around the hall.

Importantly, we have listened to the maxim that you can’t change the child, so you have to change their environment. We have changed what we do at home to be more responsive to his needs. We skip events if he can’t handle them (we missed carol singing as I wrote this). We give him space. We leave everything as calm as possible. We haven’t done nearly as much as we should – our house is still cluttered, but what we have done has worked. I have tried hard to modify my behaviour around him. I have tried to learn the techniques that work with him.

I’ve become a different Dad, the one he needs. At least, I’m getting there.

Perhaps most of all, he’s out of mainstream school and into a place that gets him. They help him thrive. The removal of mainstream school curriculum that he couldn’t cope with has decreased stress dramatically. And their marvellous support has helped him grow.  The teachers, and the aforementioned aunt, have built up his confidence so he could get to the end of the show and soak up the applause.

So, the takeaway from all this?

Life with a child with FASD is never easy. Being a Dad in these circumstances is a challenge. But things change, he changes, the world around him changes, and if it’s bad at the moment, it doesn’t always need to be that way.

And, even when the worst happens, there is hope. Or in this case Joy. Joy is a rescue puppy who will be joining us very soon. She won’t be Sir Noel the Brave, but she will come to be a support and a companion our son needs.

Things can very definitely get better.

RIP Sir Noel, The Christmas Dog – An FASD Love Story

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By SB_FASD

[Note: this post also was featured in the Huffington Post UK]

Once in a while you encounter a being so pure that you simply have to believe.

Four years ago, our youngest son was struggling.  He was in Year 5. At great cost to himself he gave everything he had at school, at home, in clubs. But he walked every day in world that didn’t understand him. None of us understood yet that his behaviours were symptoms of undiagnosed brain damage caused by prenatal exposure to alcohol.

He asked and he asked for a dog. He wanted a friend. Someone who would be by his side. No questions asked.  No demands.  He needed one sure and faithful friend.

Unbeknownst to us (though it later filtered back), he asked Father Christmas for a dog at the school fete. He asked for a dog that wouldn’t “bark, whine or whinge.”  (No pressure there!) It was a difficult decision. If we got a dog and it didn’t work out, it could potentially have a devastating impact on him.

Father Christmas sent our son a special letter that arrived on our doorstep on Thanksgiving Day while our British-American home was full of guests. Father Christmas had found a dog he wanted our family to go meet.

The dog’s name, I kid you not, was Noel.

Our little one was barely able to contain himself when we met Noel, a five-year old Cavalier King Charles Spaniel.  Noel’s first action was to lay down to have his tummy rubbed. The grins of that day will stay with me forever.  Our eldest was “euphoric”.  (He was about to embark on a multi-year battle with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis but we did not yet know that then.  Noel would be near him on many a day when he was unable to get dressed and go to school, but that is getting ahead of our story.)

We are a family built by adoption (my husband was adopted and we adopted our youngest son). We knew without doubt we had found our newest family member.  He was ill.  He had been rescued from doggie death row in Ireland.  Like our son, he was traumatized by his experiences.  He was compliant, but not beaten.  His spirit was intact.

And … he was silent.  (Just as our son had been when we adopted him at sixteen months.)

Like some scene from Miracle on 34th Street, Father Christmas somehow knew exactly the right dog to send to our home.  Maybe he knew that we were about to enter some very, very difficult days.  Years of them, actually.

Our youngest son was diagnosed with a Foetal Alcohol Spectrum Disorder (FASD) the following spring. We found out that our son not only had the sensory issues and learning delays that we knew came from his early traumatic experiences, but underlying all of this the connections between different parts of his brain had been damaged before he drew his first breath.  He will forever have problems with executive functioning, abstract thinking, impulse control, adaptive planning. What makes sense to others won’t always add up for our little one. Into Year Six and Year Seven his school life became increasingly torturous.  He kept himself together at school and then bam!  He would explode at home like a can of soda that had been shaken all day and was primed and ready to burst.

Our house was the scene over a couple of years of sometimes spectacular meltdowns.  When our youngest’s brain was overwhelmed the fight and flight instinct would become all-consuming and powerful. He was not coping.  Worse, as he entered puberty, his behaviours were escalating. He started refusing school.  Regressing. He was confused and cornered. It was a nightmarish time. Heart wrenching. He was starting to run away.  He had taken candy from shops. He was fixated on lighters.  When you live it, you don’t always see how these things can creep up over time.

When things would heat up at home, we learned our own little family ballet. Our eldest would put on headphones and block it out via computer games.  Noel would be put out in the garden or in the kitchen where patiently, he’d wait.  My husband and I would tag team, sometimes more successfully than others. These distressing moments would come crashing down around us.

When it was over, Noel would go up to our son, tail wagging, ready for the healing. The first apologies were always for Noel.  How many tears were cried onto that Blenheim coat.  How many hugs he had.

Sometimes our youngest would speak through Noel.  He’d say (in a Noel voice), “Don’t hit Mummy, she loves you.”  “Stop throwing things, they will break.”  “Don’t say mean things, it’s not nice.” “Go to your calm space.”  We are learning about the whole “theory of mind” thing. For sure, Noel helped our son see the world through different eyes.

Our whole family needed this little fur ball. The walks along the river, through the field. The cuddles on the couch.  The impromptu games of fetch in the garden. The big, uncomplicated brown eyes staring up into ours when we too needed a constant in a tumultuous world that could change moment to moment.

He was our shin-high reminder to slow down and just let the positives wash over us.  Our very own walking embodiment of mindfulness.  Noel was our regulator.

As a family, we grew.  We learned techniques and strategies to support our youngest. He learned words like ‘dysregulated’ and became conversant on stress toys and calm spots and neurons that have trouble talking to each other.  We built a support network in our area.  Now there is an FASD Club for other children just like him.  He is not so alone anymore, not so misunderstood.

Critically, one year ago he moved into a specialist school where he is cognitively supported and where they have lots of sensory outlets for him to help him self-regulate (including school dogs).  We have found the right medication to help him focus.  His meltdowns have almost entirely stopped.  We seem as a family to be entering a better place.  Our youngest is more even, calmer, more comfortable in his own skin – though of course we have the teenage years ahead.  Our eldest has come through the worst of his CFS/ME (knock on wood).  I changed from a very stressful job with lots of international travel to one where I now work full-time on raising awareness of and support for those with FASD. We are all of us hopeful that things are on a safer and more settled path.

Sir Noel, the Sweet One walked with us out of the darkness to this brighter place.

Earlier this month we started to notice Noel seemed to be out of sorts.  He had been coughing.  There were visits back and forth to the vets.  Fireworks season here in England in early November really affected him.  His heart never stop racing, his breathing became laboured.

Noel was staying closer to us all – visiting our eldest in his room more often.  He was curling up with my husband more persistently. He very uncharacteristically (once) protectively snarled at the door when the postman came.  I think I knew what I was seeing.  I let him sleep curled up behind my legs for weeks.  My dad had heart problems.  I think I knew.

And so we found ourselves a bit stretched out, concerned as we entered this holiday season – the same time of year when Noel first entered our lives. This year, our youngest and I bowed out of early Thanksgiving festivities and stayed home instead.  Noel spent that day by our son’s side, curled up peacefully for hours next to him on a furry blanket. Our little one had just had a complicated hand operation, trying to give more motion and strength to a hand that had also been damaged by prenatal alcohol exposure. They needed each other that day, those two.  I am so glad they had that time.  So proud that our family had learned enough to not force our son into a social situation that he was never going to manage well. Relieved we have the confidence now to structure our lives to help meet his needs, to change the environment around him to allow him to succeed.  To focus on the positives and not let the negatives consume his whole world as they were starting to do.

The next day Noel was having more trouble. He was quietly seeking sunshine and warmth and simply standing there.  I guess some might say he was moving into the light.  Eyes locked together, that last night I fed him bits of chicken by hand when he was having trouble eating, stayed up with him in the early hours.  Bleary-eyed I went off to a meeting in London the next morning while my husband brought Noel to the vets. He was going to be escorted to an animal hospital for tests personally by the vet, who loved him too.  He died 15 minutes after my husband left.  Noel needed to be alone to let us go.  Just like my dad.

I was in a room full of medical professionals who were discussing FASD at the Royal Society of Medicine when the urgent calls and texts came. These were some leading academic experts on intellectual disabilities, but the thought flashed through my mind, could they understand this? I greatly value their insights but there is no way a book could teach this – the unquantifiable, sometimes inexplicable reality of the ups and downs of life for those living on the FASD spectrum and their families. The tectonic plates had just shifted in our little one’s world. I had to get back before our boys came home from school.  I left the experts to their PowerPoints.

Oh, what a heartbreaking conversation as our little one’s world crumbled. As he locked himself in his room blasting “The First Noel” over and over and over again.  As he called on the genies to make the wind swirl backward in a reverse tornado to bring him back.  As he panicked about whether Father Christmas might be angry that the Christmas Dog had died.  When he alarmingly said he wanted to die and go to heaven to be with Noel.  When we realized he was blaming himself, thinking Noel’s stealing of a forbidden piece of toast with cheese that had been left down low a few days ago might have brought this on.

The next day he once again used a Noel voice to say it’s okay, he had found Grad in heaven, he wasn’t alone anymore and he wouldn’t leave his side.  That he had found a whole field of Greenies (his favourite treat).  Our son was thinking abstractly, and Noel was helping him still to find his way forward. But there is a hole, a huge gaping hole in our little one’s world. It’s one thing to say that love never dies, but another thing entirely to process it.

We are a family that believes in Christmas magic.  While initially we were thinking it would be better to wait before finding another four-legged companion, we realised that due to our son’s perseveration, the way he can sometimes fixate on things, this space needs to be filled.

And, wouldn’t you know it.  A sweet puppy named Joy (I am not making this up – I couldn’t make this up) is coming into our lives in a couple of weeks, right before Christmas. She is traveling to us from Bulgaria.  Another adoption. Father Christmas wasn’t mad at all.  He knew.

Yes, we needed a certain kind of dog to get us through these past four years, and we had the best.  Sir Noel, The Christmas Dog’s love for us and his faith in us was transformative.

But that isn’t the end of this story.

Joy will follow Noel.

 

 

 

Dear GPS: Show Me the Positive Route

Blog Staying Positive is the Way ForwardBy SB_FASD

There I was.  Sitting in front of McDonalds, my 13-year old son in my lap.  Holding him in a tight hug, my chin on his shoulder.  Stroking his arm.  Squeezing his leg.  Rocking him back and forth quietly. Giving him proprioceptive input I know he needed if we had a chance of getting out of here without a huge scene.  I asked him if he knew people could hear him.  When he changed to a lower tone, I understood he was not fully dysregulated and we had the potential to turn this around. Ignoring the looks, I was actively thinking to myself how these days I really don’t care if others stare. They can keep on looking.  My focus was where it needed to be.  It was working.

It’s the last week of summer holidays.  We have nearly run out of our scheduled clubs and holiday programmes: theatre school, gymnastics, movie club.  This week we are more ‘freestyle’ (‘lazy,’ ‘lax’, ‘out of ideas’ are other ways to say that).

Our only plan was to go to the trampoline centre.  This was our son’s request, and he specifically asked that we go there later in the day, when there would be fewer people (I was pleased of the planning ahead and self-awareness this involved).  During the rest of the day, we left him to his own devices for way too long.  (So, yes, maybe ‘lazy’ is the phrase I am searching for.  Or ‘worn out.’)

It was time to go.  Optimistic and eager for an unusual family of four outing, we trundled off.  His elder (neurotypical) brother had decided to come too.  It took all of about five minutes before we hit a literal roadblock.  A traffic jam due to road works meant we had to redirect our route.  Big mistake.

Things, as they say, took a turn for the worse.

England’s bumpy single-lane country back roads are not the best place for a child with anxiety issues who had recently surreptitiously nearly OD’d on ice cream bars.  His anxiety levels skyrocketed.  We were not sure we would be able to continue.  We did eventually get there, barely seat-belted in (the belt and the bumps were making his tummy feel sick). My every bit of maternal patience was at its end (I was travelling in the back seat with him.  His brother was in the front seat.  This is our usual flying formation).  We all had to be quiet. Everything was wrong, disturbing him. He had said at one point, “Maybe I just shouldn’t go in cars.”  This was his way of saying he was really seriously struggling.

I am glad we got there.  On those single lane roads that cut through fields, the reality is we didn’t have much choice.  He had a fun one-and-a-half hours of flipping, twisting, jumping, parkouring and cartwheeling.  I got to see his new aerial move.  His backflip-into-front-flip.  His many hours of premiere gym sessions this summer have clearly paid off.  His mastery of skills is awe-inspiring.  And a great way to get his ‘ya-yas’ out, as we call it.  His elder brother came off after about 45 minutes, saying he has no idea how the little one can do so much jumping for so long.  Neither do I.  His energy has always inspired me. And yet, I could hear from the floor some of our little guy’s more excited sounds increasing as time wore on and the disco lights came on.  I suspected we had passed the therapeutic usefulness of this place, and we might be in for it when it was time to leave.  We started discussing strategies for the ride home even before he got off the trampolines.

Hot and overtired, he insisted on frozen yoghurt and a slushie when it was time to get off the trampoline floor.  We didn’t argue.  We knew we were on razor’s edge.  He didn’t eat either of them.  They tasted ‘disgusting!’  At least they made it into the trash without disaster. I will call that a win.  We had already made a deal with our eldest about McDonald’s.  Which of course meant the little guy wanted Pizza Hut.

And so there we were.  He fixated on Pizza Hut.  Repeatedly insisting he wanted pizza.  I tried to not contradict.  “You can have pizza.  Another night.” Choice words flew back at me as we crossed the very busy car park.  I told myself I was not caring (much) what others thought.  At least he didn’t run.  He didn’t hit or throw or break anything.  There is progress in this scene.  Even as we sat outside McDonald’s rocking together staring at the Pizza Hut which OF COURSE was directly across from us, I was trying hard to stay positive, to not let my own frustration show.

Then, finally, I heard it: “My brain is saying it wants pizza.  Just pizza.”

To an onlooker, that might have seemed like more of the same.  But it wasn’t.  This was a different phrasing.  His way of explaining to me, not demanding.  These are the moments that are coming more frequently.  He is increasingly verbalising his self-awareness. Even if it’s rudimentary, this is a cornerstone upon which much can be built.  This, this was a sign of having reached a short-term goal. I have trained myself to recognise these whispers of hope.  Conditioned my responses (though still not perfect.)

“I understand you want pizza.  I understand your brain wants pizza.” Several times I repeated the word pizza, so he felt heard, validated.  “Your brain is only thinking about one thing. That happens to a lot of people with FASD.  It has a name: Perseveration. You have to train your brain to think of something else when it gets stuck like this.”  Yes, I literally said that to my nearly dysregulated son, while we were rocking together right there in front of the older teenage crowd who were watching us as they were blowing off time at McD’s before the movies.

Sometimes it seems I can feel it or see it when he ‘hears’ something and stores it away.  His body goes a certain kind of still.  There is a pause.  I know even in the state he was in, he heard that word “perseveration” – we will return to it another day.  Many other days.

My husband had ordered a happy meal for him.  We walked to the car.  This time before we got into the potential torture chamber, we all stopped.  I said to our little one: “It’s your choice.  If you aren’t ready to go in the car, we can wait until you are.”  That seemed to work.  He thought about it.  He said he was.  And maybe he really was…until he discovered the lack of BBQ sauce in the bag and a phone was thrown (but not hard, it was not harmed, thankfully and the toss was instantly regretted.  Again, mini-points toward a win).

Seatbelts on, we tried to proceed out of the parking lot without BBQ sauce, but things were escalating and we decided to turn around to get some.  I think that helped, he felt ‘heard.’  Our eldest was a star, gently talking to his brother, without taking it personally this time.  The trampoline park exercise had helped them both.

With the aid of newly acquired BBQ sauce and back on our normal route, the ride home was quiet.  He went up to bed with no further incidents.  The rest of the night was okay.  (Well, with a minor blip of husband losing something leading to a house-wide and unsuccessful search.  Oh, and some last-minute scheduling snafus we only discovered while husband packed for an early morning work trip…Our lives are messy around the edges these days.  Imperfect.  We are winging it more than usual, even for us. We are frazzled. Frayed.  It is very clear we are limping along in the last week of summer.)

Even still, after it all I was left thinking:  I am getting better at ignoring some things and have actually started to train myself to focus on other things.  It is getting easier. I can ignore the stares – or if I can’t ignore them, I allow myself to stare back as I did the other day on the tube, rather than shrink away.  (If you think you can stare at my child, I can stare at you.)  I can increasingly ignore the tut-tuts and the sideways disapprovals.

More importantly, I can listen much more attentively to the nuances of my son’s – both our sons’ – moods and needs.  I explained to our eldest when we got home that I think that was progress tonight, trying to help him see beyond the roadblocks, to see the markers of progress we are reaching.  Six months ago or a year ago we would have experienced total disaster this evening.  As it was, it was awkward.  It was tense.  But it was not a disaster.

So, here we are, nearing the end of the school holidays.  This year it has been better than most summers, but far from ‘easy.’  Some may say I am the eternal optimist/clutching at straws, but that is the only way I can see through to the tomorrows I want for our family.  Like entering instructions into a GPS, this determined choice to take the positive route is the only roadmap that will get us there even if it is not the most direct or obvious way forward.

I believe we are heading in the right direction.  I insist on amplifying and marking these signs of hope.  As the song once said, “it’s got to be the going, not the getting there that’s good.”

Yes! Follow THEIR Dreams, Not Yours

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By SB

Children with disabilities too often hear ‘no’.  This was true for our little one who has a neurodisability as the result of prenatal exposure to alcohol – a Foetal Alcohol Spectrum Disorder (FASD).  Before we understood that his brain was simply not wired to respond quickly or intuitively to a world he found deeply overwhelming, we kept ‘correcting’ him.  Every day he heard in a thousand different ways that his instincts and his responses were somehow wrong. That was our fault, not his.  We moved too fast for his brain to process it all.  Unknowingly, we threw him in over his head time and time and time again. We were too slow to hear what he was telling us, too slow to react to his needs.  His behaviour may have been the focus, but we were the ones who needed to change. He was finally diagnosed with FASD at the age of 10, but even after the diagnosis it took time for us to adapt to the implications of his brain damage.

Things started to improve when we started to listen to him, really listen.  We realized that while he cannot always phrase it well, he has insights into his condition that can help us to help him.  It became a positive loop – the more we listened, the more we understood.  It took some detective work and some professional input, but the more insight we had, the more his anxiety decreased.  The more relaxed he was, the better he could express himself.  Being more able to understand his perspectives allowed us to agree or at least discuss strategies.  Slowly, with this new shared understanding, we all started to come up for air.

One key element was seeing the world from his perspective – understanding the impact of the negatives we were showering over him with our (we thought) gentle ‘helpful’ reminders.  We dropped the ‘no-s’ and ‘don’ts’, and we started to say yes more often.

Accepting he would always need support, we set out quite deliberately to build a network around him, and began to prioritise settings where he was better understood (including moving to a specialist school).  We also came to appreciate that as hard as it was for us to wrap our heads around the diagnosis, it was harder for extended family, friends, teachers, and people in the wider community.  So, we opened up about our lives, his struggles.  We very carefully and consciously helped educate those around him about FASD.  We tried to face it all with positivity.

Life-changing stuff, that turned out to be in ways big and small (even if it is still a work in progress, as readers of this blog will know).  It included me giving up a career of nearly 30-years to work on raising FASD awareness full-time.

But this wasn’t one-directional.  Our son also has stepped up and has led us to a whole new understanding of what he can do with the right kind of support.

I’ll give you a rather extreme example.

Our son doesn’t see or experience the world the same way we do.  But that doesn’t mean he doesn’t have his own dreams.  All kids do.  Our guy has in his head a definite picture of where he wants to go, what he wants to accomplish.  Specifically, our son wants to play Wembley.  Or the O2.  Preferably with Little Mix.  You probably just smiled.  But please know, he is dead serious about this.

All those years he spent watching Hannah Montana, perfecting the songs and dances.  The hundred times he watched the DVD about how Justin Bieber became a star.  The disappointment when his YouTube channel didn’t get a million views once we set it up, and the belief it still will someday.  Each and every night spent in his room blasting Little Mix, rocking and memorizing and absorbing the music into his very soul.  Engaging his muscle memory, using music to perseverate on something, to focus his mind, to help him relax, to help his body know when and how to keep it all together.  Countless ‘concerts’ in his room with stuffed toy ‘fans’ and toy stage lights aimed just so.  The years of shopping in charity shops for costumes.  Researching stage lights.  Contemplating how curtains rise and fall.  The years of music and singing lessons.  Ongoing involvement in local supportive theatre groups.

Our guy has been preparing mentally for his Tour for a long, long time.  And in his mind, this was and is very, very real.  A dream this big could be heartbreaking. Some might say we should ‘nip it in the bud’ to avoid profound disappointment.  And yet…

There was and is no way on this earth that I am going to tell this child that he will not make it to Wembley.  Because, really, I don’t know that.  He just might.  And he sure isn’t likely to get there if we don’t believe he can.

Over the past several months his conversations about his Tour became increasingly insistent.  He wanted so desperately to perform, but couldn’t quite figure out how to make it happen.  He was becoming frustrated.

So, we thought outside of every box, and decided to give muscle to his dream.  We rallied all those people around him who could help and we simply said yes.

Yes.  We will help you bring your rainbow-coloured Flashing Lights Tour to life.  Yes, people will come to see just you perform.  Yes, seriously!  You can do it.  We told him his grandmother rented a school theatre.  Oh, if you could have seen the light that sparked in his eyes.  He went to work.  He orchestrated it all.  He designed the stage.  He planned, practiced and rehearsed his ten-song set list at school and with his voice teacher.  We designed posters and Tour merchandise.  Thanks to his auntie, he had five costume changes all lined up.  Another auntie agreed to be MC, fully prepared to support him in whatever way he needed that night.  A teacher arranged things in the sound and light booth – not blinking when he said he wanted it to look like the Ariana Grande stage, showing how we could improvise.  About 50 people agreed to attend.

When the night finally arrived, we weren’t sure how things would go.  During the sound check he closed into himself.  He looked frighteningly small and alone on the big stage.  With a thud in my stomach, I started questioning this whole idea.  But in one of the most eye-opening moments of the whole experience, we literally saw him stand taller, more confidently when two of his young friends arrived early and started to cheer him on in practice.  Singing for them, he expanded again.  I knew then that the night would be golden.

It started with the ‘Meet and Greet’ – adoring fans clamouring outside his ‘Tour Bus’ (a superb addition provided by a friend).  His ‘security guard’ then hustled him into the theatre.  Curtains opened and for about 45 minutes our little one filled not just the stage but the whole theatre with his presence.  The audience were armed with tour tags on lanyards, LED lights, glow-sticks, colourful scarves to wave.  Song by song he grew stronger, more confident until the almost impossibly perfect moment during the encore when he became complete amid confetti canons and massive balloons bouncing across the stage and around the adoring and cheering audience.  This was the grand finale he has so often dreamed about!  He floated through the After Show party and during his ride home on the Tour Bus.

For this one night we removed all the roadblocks, and we said one big, huge, concerted “Yes!”  We stepped so far out of the mold it was a bit scary for us all.  It was a risk he was willing to take, so we took it.  We showed him that his dreams can come true, that we hear him, that we will cheer for him in the way he choses to present himself to the world.  Rather than encourage him to fit in to a model that was never created for him, rather than encouraging him to keep his head down so as not to attract attention due to his vulnerability, we said yes.  Maybe it was counter-intuitive … but we did exactly the opposite of what would be ‘safe’ for him as a child with a disability.  We followed his lead and put him up front, under the spotlights, right there on centre stage, precisely where he wanted to be.  Where he deserved to be.

And the unexpected happened.  All the glitz and attention calmed him.  A family member summed it up, “He was totally fulfilled, therefore he was totally at peace with himself. He would have done that performance to ten or 10,000. It was his place, his dream and his achievement.”  (He later said to me, “Mummy, I wouldn’t be nervous, I could sing to 30,000 people.”)  A friend observed, “The people, the songs, the atmosphere – he breathed in (his form of yoga) and found himself calm and in control after the performance.”  It never dawned on me that this was a type of self-regulation.

In creating space for him to give of himself so fully, we all became that much more complete ourselves.  “His zest for life is infectious!” one friend said. “Who else can get a room of adults and awkward teenagers dancing and waving scarves?! We all left with aching mouths from smiling and feeling very proud.”

Another friend quoted Audrey Lourde, “It’s not our differences that divide us, it is our inability to recognise, accept and celebrate those differences.”  For that night, we were united in our son’s world, and boy did we celebrate those differences.  And it was a blast.

The whole evening was full of sparkle and colour.  His effervescent spirit held us all up just that much higher.  We were all there with him, for him, because of him.  This was his 13th birthday celebration – his chosen way to joyfully enter teendom.

I know not every child can get on stage and belt out ten songs in front of a crowd while dancing in glittery costumes.  But every child has some one thing.  Whatever that one thing may be deserves oxygen and sunlight so it can grow.  If we listen closely enough, and help our kids follow their dreams (not ours), we are planting the surety in their souls that they are heard, they do matter, and this world sparkles and shines more brightly because they are here.  Maybe to you my family sounds bonkers.  Yes, we did this Big.  Large.  It was most certainly over the top.  That was a conscious choice.  We chose this, rather than a holiday.  It may be unusual to spend an evening simulating a pop concert instead of going away – but this was oh so much better than scurrying off in a car where he’d meltdown to some place where he would be overwhelmed and lost just because that is what people do for holidays.

The memory of this night will last forever.  Hopefully it will always be with him, deep inside, on those dark nights when self-doubt starts to gnaw away.  Hopefully this experience will serve as some kind of insulation against the relentless onslaught on his self-esteem that we fear the teenage and young adult years will involve.

Come what may, for this one glorious night our little one was up there, giving his all to a room full of people who were quite happy to hear HIS voice.  We weren’t telling him what to do, he was showing us what he can do.  For this night, he was surrounded by the thunderous applause of one huge and resounding “Yes!”  For this night, he shone forth in all his magnificence.  We could see – literally see – the network we created cheering him on.  The thought of that still brings me to tears, even if I was too busy at the time jumping and dancing in the front row to understand then the full impact of the Flashing Lights Tour.

We must have done something right.  The first words out of his mouth the next morning were “Mummy!  I had a dream about going on tour again!”

 

 

 

 

 

 

 

Ten Tips for a Holly Jolly Christmas – Inclusion, FASD & That Christmas Dinner…

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By @FASD_Mum

Ho Ho Oh Boy – it’s Christmastime. Again.

For those in the greater FASD community who celebrate Christmas this time of year is challenging.  Feeling more like Scrooge than we care to admit, we jump out of bed each morning with an eye toward Christmases Past, Present & Future.

Christmas Past

We have suffered the defeat of Christmases past – when time and again expectations have been dashed by the hard realities of life for a child with FASD.  Flashing lights.  Sparkly tinsel.  Spinning decorations. Dropping pine needles.  Anticipation.  Confusion. Disbelief. Unbearable excitement.  Inevitable disappointment.

Ten Christmas truths as we have come to know them from Christmases Past:

  1. Not all kids can handle the idea of a big man dressed in red coming down imaginary chimneys.
  2. Some can handle even less the idea that it might not happen.
  3. Santa’s naughty or nice list can cause great anxiety for kids who have trouble controlling behaviour. In our house, kids know Santa gives points for trying.
  4. Schools have no clue how much toll those extra events can take on some kids. The lead up to The Day can be daily chaos for kids who need routine.
  5. It can matter greatly if a tree starts to shed its needles early. Last year our son panicked every day for a whole month.  This year we have an artificial tree.  (Still in its box along with all the other decorations, I might add.)
  6. Christmas light speed dials should be banned.
  7. That fact that it doesn’t snow in every town on Christmas Day can cause great distress for some kids who think Santa’s sleigh needs snow to land. This isn’t ‘cute’, this is a serious worry.
  8. Most toys have a half-life of joy measured in nano-seconds on Christmas Day.
  9. For some kids, sitting for that famed Christmas dinner is a mini-torture zone.
  10. The pressures on parents/carers to maintain calm for hours can suffocate the joy out of any lighted Christmas pudding.

There is probably not a parent/carer who celebrates Christmas with a child with special needs who does not put their head down on the pillow on Christmas night without a huge thankful thud that it is over for another year.  Who among us has not sworn we will never do it that way again….

Christmas Present

And yet, here we are, preparing for Christmas Present, ready to repeat/endure the same routine.

This year, please have a thought for families who may be struggling, those who need a change.  Those who see a train wreck coming and are asking in ways big and small for your help.

The weight of Tradition is bearing down on us, suffocating us.  We are already balancing as best as we can the demands in our own homes, let alone bringing our particular road show to others’ houses.  We desperately want to feel festive.  We want so much to have fun, to be reminded of what it is like to feel relaxed and joyful that it is Christmas.  But we too often feel alone, stressed, isolated, and perhaps depressed.  We are tired, even if we have plastered a happy smile on our face for the kids and for you.

Ten tips for helping a family with FASD through this holiday:

  1. Give them time to prepare – offer to take their kid(s) for a walk or out for hot chocolate, or for a sleepover one weekend before Christmas. They have some elving to do and really could use the time to feel the fun of it.
  2. Offer to help put up lights and decorations when the kids are out at school.
  3. Treat the parents/carers to a festive lunch one day while the kids are at school, before Christmas holiday madness happens.
  4. Plan to have a special activity with the kids during the holiday – plan ahead, let that be your present to the child. A movie, a trip to a soft play area, ice skating, a trip to a special pool – anything.  Believe me, the parents will worship you for it.
  5. Keep celebrations short – holiday marathons are not made for kids who sprint.
  6. If you are worried about ornaments breaking – remove them before kids with FASD arrive, do not let the focus of the day be everyone telling the kid to stay away from shiny, sparkly, intriguing things they are never going to be able to ignore.
  7. Ask ahead what the kids might eat – it is nowhere written that mac and cheese is banned from a Christmas table.
  8. If you know adults with FASD – reach out to them before Christmas, ask how they are doing, see if they need help planning or shopping. Ask what’s on their minds.  Some grapple with past traumas that would bring most of us to our knees.  Invite them over if they have no where to go.
  9. If someone you know struggles with addictions, don’t serve alcohol if you have invited them to your home.  Show respect.  At the very least be sure you have some fun sodas and non-alcoholic treats.
  10. Give people the space they need – have somewhere quiet ready in case a person with FASD needs to have a break, and let them go there without making them feel bad, without any jokes.  The pressures each feels are very individual, please be flexible and understanding and do not interpret their needs as a personal criticism.

Christmas Future

And then, there are all those Christmases Future.  As challenging as our past and presents may be we all have a wish for the future – to ensure other families can avoid having to face these challenges altogether.  The most important gift in the world is the gift of health.

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There is great pressure at this time of year to be ‘festive’ – to have another cocktail.  To toast a new year coming.  People make merry in lots of ways.

Statistics show that “December is the month when the highest number of babies are conceived and the month in which the highest amount of alcohol is consumed. (Office of National Statistics, 2015).  It is crucial therefore that families are aware of guidelines about the effects of prenatal exposure to alcohol and developmental risk for children so that they can enjoy the festive period more easily.”  (See the excellent article by Carolyn Blackburn, “Did You Know More Babies Are Conceived at Christmas Than Any Other Time of Year?”)

If you think you might be pregnant, if you are trying to get pregnant, or if you are having sex without birth control, remember, remember, remember it’s not just about this year, but all those years ahead.

The UK Chief Medical Officer says “The safest approach is not to drink alcohol at all.”

Here is a video by Lee Harvey-Heath, an adult with FASD who encourages people to see the world through his eyes via his Facebook Page (which we strongly encourage you to ‘like’) and other outreach.

 

One Final Thought

And yet, for all the angst, there still is nothing better in the whole world than to see a child’s face light up in that first magical moment on Christmas morning.

 

 

Christmas Gift Ideas for Little Ones With FASD

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By @FASD_Mum

This is for those of you who, perhaps like us, may be behind in the Christmas shopping department and who may be looking for gifts for those little ones with FASD.  These are some items over the years that have been big hits.

Apologies, many of these links are for UK sites – but most of these items are available elsewhere.  These are suggestions only, of course we can’t endorse any specific product.  We understand all kids are different, what calms one may have the opposite effect on others.  But in case it’s useful, this is a glimpse into what has worked for us over the years.  (There are lots of great items available on sensory toys websites.  Here is one example of a great site.)  Christmas isn’t just about presents, and for our kiddo less is often better.  We are posting a variety of things here, just to get those creative juices going if, like us, you are staring into these coming holidays like a reindeer in headlights.

Our main point is that while some of these might not seem like presents you may have wanted as a child, they might be extremely welcomed by a sensory-seeking kid.  So, think outside of the box.

A heavy furry blanket.  Our guy has one he uses every single day, it’s great for sensory regulation and calming.  I have no idea if this one is heavy, it’s just an example.    screen-shot-2016-12-04-at-10-28-02-am

Soft colour changing pillow.  This one is really soft.

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Emoji bedding – we have used an emoji duvet cover and emoji pillows to help develop strategies for how to go from angry to happy (see this blog post) and to help him describe how he is feeling.  (We also have been known to encourage throwing the emoji pillows at a bare wall when frustrated or punching the pillows…) He loves emojis!

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Sensory den/dark pup tent.  We have always wanted to have enough space (and money) for one of these or a bean bag chair (there are lots on that site, including some great full body loungers and some for teens).  You can be creative.  We have improvised by the bottom of a closet as a calm space for our guy.  Previously we hung curtains around the bottom of a bunk bed and put in special lights.screen-shot-2016-12-04-at-10-33-41-am

Bath items – GelliBaf, foaming bath soap, lavender bubble bath, bath cups with different holes in the bottom

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Fidget bag – lots of options for creativity here, great stocking stuffers (this is only one example) or maybe a fidget pencil case for those who have trouble sitting still in class.  Pencil fidget toppers or a chew buddy necklace also can help.

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Clothes – our guy loves compression shirts and tights, anything with spandex and without tags.

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We haven’t bought weighted vests or expensive weighted blankets, but we have used lap pads and weighted warmers.  This one looks fun.  We used to have vibrating bug massagers and Ps and Qs for chewing.

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Always wanted a body sox, but suspect we waited too long.

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Safety mirror for those who tend to make things sail across the room.

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Galt marble runs have been a favourite in our house for years (though marbles do fly, and should be avoided for kids who put things in their mouths).

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Hands-on is great.  We have had success with magic sand (though be vigilant, we heard one family had a struggle when it was washed down the drain), play doh – our latest is the ice cream shoppe, play foam (but beware it’s very sticky).  We also have in past just given a huge plastic bowl so he can mix ‘concoctions’ in the kitchen.

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Also spinning paints, spinning markers, Spirograph JuniorGears! Gears! Gears!  (Yes, there is a theme here…)

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Disco lights (we have many, but not this particular one). A bluetooth speaker with LED lights was also a big hit, worth checking out if you have technology.  There are many options for inexpensive sensory lighting, such as this one.  Have a google.

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Jumping items – a must when our guy was younger – sadly our garden isn’t big enough for a trampoline these days.  But a kiddie trampoline for the young ones would be top on my list (there are sturdier ones from disability aids websites).  Skipping ropes are great too, and cheaper.  Exercise balls can also be great for home use, having a kid just sit on one and watch TV or when doing homework can really help give that little bit of input – but in our house they fly too often for comfort.

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Swingball – endless hours of entertainment

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Books – we have found that our guy has a different relationship with books than our elder son.  He does better with hands-on books, like the Usborne Lift the Flap books (which actually contain some higher level info but more easily accessible for him, in little bursts). See Inside Your Head was one we used to help him start to understand his brain (though it’s not FASD related, we found it useful).  (When he was smaller all the touch and feel books were essential, like the That’s Not My… series.)   DK Eyewitness books for kids are also a hit, again very visual and short bits of info. DK Eyewitness classics are also a great way to introduce literature – like the other DK books they also have short bits of info and lots of visuals around the main story.  A Christmas Carol might be a timely one. (Some of these are out of print.  We often buy used books, we call it recycling.)  We also have had success with books based on movies like the Spy Kids or some of the Disney stories – the movie visuals in the books seems to help him focus.

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Things scented.  Scented markers, scented pencils, scented stickers, scented bubbles, and the latest craze – Num Noms (ridiculously expensive but for a kid that loves smells I can see why he likes them).

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Time timers – these are great – for kids who can’t innately understand the difference between 5 minutes and 5 hours, they show how much time is left visually.  (We sent some of these into school.)  There are some cheaper versions or the larger more expensive ones. We also tried a clock that changed colour every hour, but he hated it in the night (he needs a pitch black room to sleep.)

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Some traditional games – Bingo! with a spinner.  Candy Land is still a favorite – (based on moving around by colors) and also Story Cubes, Spot It/Dobble.

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Learning games – We’ve had recent fun with Lazer Maze, Gravity Maze, and Snap Circuits electronics kits (that we have often found used on eBay).

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Lego – our guy never got into Lego until we got some Lego Friends.  We think the traditional Lego people were too abstract for him.  And then he loved the Lego friends performing sets.  There is always some Lego set that would appeal to most kids.

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Technology – our guy has a love/hate relationship with technology.  We have found some things work better than others.  The entire LeapFrog range was always top of our list, very sturdy, good educational – and the toys go from very young phonics magnets up to a LeapPad (which he still uses).  We have had good luck with the Amazon Fire tablet for kids, (though we got it on sale). Same with the  voice command Amazon Alexa speaker (less to break), which we also got on sale.

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Topping this year’s list?  Bean Boozled 4th Edition party game (these come in smaller packs as well).  For those who don’t know, bean boozled jelly beans have two flavours for each colour – one pleasant and one disgusting.  For our sensory-seeking son, getting a small pack of these is often a highlight on a Saturday – he films himself trying them and spitting out the horrid ones.

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He’s also desperate for Pie Face.  I think I see why.

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There are so many things he wants in the ‘made for speed’ category.  He has a scooter that sparks, that was a highlight of last year’s Christmas.   Some of his other demands we consider too deadly to consider: hover boards, skateboards, Heelys, etc.

This seems like a feeble attempt to lay out some ideas.  The main message is to ‘think sensory’ when considering toys.  Don’t try to push them to a new level if they are not yet ready.  Puzzles, dress up clothes, dolls – lots of those items that little kids like big kids might still like and need.  It takes some shedding of parental expectations to find those toys that will help them grow but also provide fun rather than frustration.

If you have other ideas, please feel free to share them in the comments section below.