Crunch Time – Beyond Broken Doors and Dreams

Blog_CrunchTime

 

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.

 

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

 

 

 

 

 

SaveSave

SaveSave

SaveSave

Advertisements

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

Blog_SirNoel
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

Blog_Yes

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…

copy-of-think-before-you-drink

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.

christmas2016

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

we-love-a-child-with-fasd-8

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.

screen-shot-2016-12-04-at-10-31-03-am

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!

screen-shot-2016-12-04-at-5-26-57-pm

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

screen-shot-2016-12-04-at-10-45-25-am

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.

screen-shot-2016-12-04-at-10-56-17-am

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

screen-shot-2016-12-04-at-12-45-51-pm

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.

screen-shot-2016-12-04-at-12-53-12-pm

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

screen-shot-2016-12-04-at-12-56-16-pm

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

screen-shot-2016-12-04-at-10-50-45-am

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).

screen-shot-2016-12-04-at-11-06-53-am

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.

screen-shot-2016-12-04-at-11-15-25-am

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

screen-shot-2016-12-04-at-1-13-05-pm

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.

screen-shot-2016-12-04-at-11-32-08-am

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.

screen-shot-2016-12-04-at-11-36-36-am

Swingball – endless hours of entertainment

screen-shot-2016-12-04-at-11-52-16-am

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.

screen-shot-2016-12-04-at-12-58-02-pm

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).

screen-shot-2016-12-04-at-12-08-52-pm

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.)

screen-shot-2016-12-04-at-2-06-41-pm

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.

screen-shot-2016-12-04-at-12-29-21-pm

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).

screen-shot-2016-12-04-at-12-37-20-pm

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.

screen-shot-2016-12-04-at-12-39-51-pm

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.

screen-shot-2016-12-04-at-12-27-13-pm

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.

screen-shot-2016-12-04-at-12-10-45-pm

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

screen-shot-2016-12-04-at-12-14-10-pm

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.

Extended Family, FASD, & Halloween Happiness

extended-family-can-make-halloween-fun-for-a-kid-with-fasd

By The Auntie

I currently have two pumpkins sitting in my kitchen, one of which I will help my nephew carve when I have him over night on Wednesday for another of our sleepovers. I have never carved a pumpkin with him, don’t know if he will enjoy it, but this we will discover.

For the last couple of years, I have found myself at home for Halloween and I LOVE Halloween. I have fond memories of eating silly, “disgusting” food, dressing up and apple bobbing as a kid.

Nowadays, it’s all about the trick or treating and no-one seems to do the traditional games any more, so I decided that I was going to introduce the kids in my family to a couple of them.

And yes, I dressed up. I like dressing up. The first year I was the only adult that dressed up. Last year there were more.

So here’s the recipe …….

  • Make a finger food buffet and give it Halloween style names.
  • Make your own costume – a sheet for a ghost; a ripped T-shirt and some face paint makes a zombie; black clothes and green face paint transforms you into Elphaba – use your imagination and it doesn’t have to cost a fortune.
  • Buy some apples.
  • Buy some doughnuts and string.
  • Put the apples in a washing up bowl full of water and bob – I can promise you that the adults WILL get competitive!
  • Eat the finger food – this has to be done before the doughnuts – use the doughnuts to bribe little people into eating some proper horror food.
  • Tie the doughnuts on the string. The contestants lie on the floor and have to eat the doughnut from the end of the string which is held sympathetically by another contestant.

At some point in the evening they will want to fit in trick or treating, you fit it in where appropriate.

“So,” I hear you say, “That all sounds like fun stuff to do – why is The Auntie making a point of it?”

Festivities are always a trial for families of kids with special needs. In the frazzled environs of day to day life, planning anything more than managing to get out for some trick or treating is near impossible and our kids with FASD can feel let down, left out, or overwhelmed.

By giving up a few hours time prepping some food and organising a couple of silly games, you can give your families affected by FASD an evening of smiles, silliness, rest and respite.

Even if you don’t want to do the food bit (you could always ask whoever is coming to bring a contribution and have a pot luck dinner) you can still give your families a moment away from the everyday trauma. The new school year adjustments are ramping up. You can give them a tiny oasis away from that.

Yes, it might only be a couple of hours. But, for our families, those occasional moments may be enough to knock a couple of straws of the camel’s back.

Happy Halloween!


P.S. from FASD_Mum:  What The Auntie may not know is how many challenges her Halloween parties have solved for our son with FASD.  His sensory issues make walking around during cold nights wearing costumes and masks a real nightmare for him.  He gets freaked by some (most) of the Halloween decorations, especially at houses where there are decorations with loud noises and surprises.  He is intimidated to walk up to people’s doors, takes too long to choose which candy he wants … it becomes very overwhelming, very fast.  He is starting to feel a bit out of place, at the age of 12, when so many of the kids are much younger, but emotionally he is still at the age where he wants to participate.  Too much trick or treating yields too much sugar, which has its own host of problems (if there is candy in the house, it will be eaten until it is no longer there – our guy is not one to pace himself and it is impossible to hide it away, candy-related meltdowns are guaranteed at this time of year).  In many ways he is just as happy staying inside and giving out the treats as he is knocking on doors.

The Auntie’s family-focused and extremely fun but low-key parties have been perfect for our son.  They are a sensory treat for him (bobbing for apples!).  Most of the activity is at her home, with a few visits to trick or treat at the homes of neighbours who know the family well.  And the real joy is that in her enthusiasm to do something she loves, she hasn’t even realized just how perfect these parties have been for our son with FASD. 

Spending time with a child with FASD can be great fun, and it’s all the more exciting when another extended family member includes them in something that they really enjoy.  Sometimes only a few modifications are needed, and the kids build such positive memories and family relations are strengthened.  Maybe this particular kind of party would not work for all kids, but I would bet there is some way to plan just an hour or two this Halloween that would really make a child light up with joy and give the whole family something to feel good about.

And then, of course, if Halloween is too soon, there is also Bonfire Night…

Further reading:

Halloween Ideas for Kids with FASD

Acceptance for this All Hallow’s Eve

 

FASD Parents Have to Suit Up

Suit up.jpgBy @FASD_Mum

I sat by the poolside, torn between admiration and brewing frustration.  We are on holiday and our son finally has the chance to swim to his heart’s content.  It is so deeply satisfying to see his sensory needs finally met.  It turns out all it takes is a large indoor pool, a Jacuzzi, a steam room, and a sauna.  I have spent more time than you might imagine, watching him smiling in that Jacuzzi wondering if we could rig up something like that in our bathtub.  I was thinking of my younger days as a “Jersey Girl” – where summers meant deciding what beach to go to or whose pool you would swim in that day.  I felt a little sad that our guy doesn’t get this full experience in community pools in “The Shire”.

Of course, the magic of it all started to wear off sometime around 5.45 pm.  That was (my admittedly random) designated time for him to get out of the pool.  We had gone back to the pool in the late afternoon.  I had already spent hours in the morning/early afternoon being steamed, bubbled, floated and baked (I loved it all).  But for this second trip back to the pool, I decided not to bring my suit.

Big mistake.

At 5:45 pm, my cherub made clear from the middle of the pool, with many witnesses, that this was way too soon to get out.  He was in fact not yet tired and was having a blast.  I specifically chose not to draw battle lines.  By 6:30 pm I was remembering a time from my childhood when my brother put an eel in the pool – that little thing was super quick to dart to opposite sides of the pool each time he tried to get close to it.  The parallels were remarkable.  My husband had come to the pool at one point, also in street clothes, perplexed at what was taking so long (since we were missing out on dinner).  I sent him back with the instructions if we did not return by 7.15 he should come with his swimsuit.  Above all, I did not want to have a battle in the pool.  We are here for a week.  I want this space to be happy.  It was after all my own mistake for not having my suit.  I wanted this to be a great day for our son.  He had to eventually grow tired, right?  (Wrong.)  I was bored, my phone had run out of charge, and my “I’m cool” façade was cracking.  But I was not going to let this end badly.

The thing was, this was one of those times when people were thinking “what a poorly behaved kid” – and those moments put my back up in a way few things do.  I was trying to be subtle, trying to keep my voice down, but really there is only so much you can hide about the scene when your little dolphin boy heads to the bottom of the pool every time you try to talk to him.  One woman even tried to talk to him to get him to come out (my husband quietly thanked her and explained he has a disability so this was not just the pure disobedience that it seemed to be on surface).

And actually, our son was spectacular.  He was in his element.  He was having a great time.  After he nearly knocked into another kid, that little boy came up to me.  I thought he was going to be cross.  Instead he whispered, “How did he learn to be such a good swimmer?”  By which, I realized he meant, “How did he learn to do those tricks without killing himself?”  So I told him he takes gymnastics, and he is fearless.  The little boy’s eyes were shining, “That’s me as well! I take gymnastics.”  Turns out our son was a bit of a hero in his kid’s eyes for all his one-armed cartwheel dives and flips into the deep end.  Our very literal son had already decided the “no diving” sign did not apply to these moves since he was going in feet first.  I could not find fault with his logic.  And I was also kind of in awe – I had no idea he could do half of those things, though I did draw a line at aerial cartwheels, since even he admitted he has only ever done those on the mats.

Perhaps even six months ago I would have dug in and got my son out of the pool at the agreed time.  I am sure many of you reading this will think I was wrong to let it slide so long.  A few months ago, I might not have realized the beauty of his thinking when I pointed out to him at 7:02 that we had agreed he would get out of the pool at 7:00.  He got a huge smile on his face and said “But it’s not 7:00, that time has passed!” before he swam off and under the surface in triumph. Genius, really, when you think about it.

We are on holiday.  The time that I chose for leaving the pool was arbitrary.  The point of the holiday is to have fun.  He was having fun.  What good would it have done if I dragged him out by one arm or if I had gone in with my dress to haul him out?  The standoff would have a natural conclusion at 8:00 when the pool closed anyway.  How lucky we were that the young woman who worked there agreed to say nicely to him that if he wanted a shower he needed to get out a few minutes before 8:00.  How lucky was I that my sister (on holiday with us) had sent along a pair of new flip-flops “from the piskies” (Cornish fairies) and that my husband was quick thinking saying he could only have the present once he was dressed?

So rather than what might have been a screaming, dripping, kicking battle, at a few minutes past 8:00 he came running out waving his note from the piskies.  Happy.  Joyful.  Tired.  Exhilarated.  I know we can’t always give him such leeway, but tonight it was possible.  Tonight, we put his needs first and we were rewarded with a content and satisfied child.

The day before?  That was another story.  That day did not end well.  That day – perhaps due to tiredness, lack of food, lack of sleep, or all of the above – our son had a meltdown in the garden of the rental house.  He tossed broken toys into the bushes (it’s not clear if the meltdown started because one of these was already broken and not working).  He threw a rock hard at my husband and hit him in the side of his face.  Our relatives who have not yet seen such a meltdown were freaked, but I could not stop to worry about their reaction in the midst of trying to find where our son had gone (not far, as it turns out).  It was a horrible scene.  The gap between what we knew we needed to do and our relatives’ instinctive reaction was huge.  I knew we needed to be quiet and reassuring so we could avoid any further escalation in this strange place with lots of winding paths that our son could easily get lost in.  They thought I was uncaring of my injured husband, when that was far, far from the truth.  They were stunned, scared, and confused to see just how far from “traditional parenting” we have gone.  I realize in retrospect that even for the most informed and caring extended family members, if people are not involved daily in our lives, the struggles can seem alienating, and the worst possible time to try to explain it is in the middle of a crisis when our son’s needs due to his disability must come first, even if we have to mop up hurt feelings for days after.

I found our son just outside the gate, looking at blackberries.  He was uncertain, standing near but fearing our reaction.  He was struggling to gain self-control.  I could see his shoulders were not yet relaxed – we were on razor’s edge.  This could either dissipate or escalate.  I didn’t say anything, just walked him down a wooded path.  He reluctantly let me hold his hand.  I surprised him by showing him flowers that matched my dress (the first thing that came to my mind).  Random enough to shake him back into the moment.  Fragile still, we walked straight home and directly into the bedroom where he finally went to bed.  Apologies to his dad waited for nearly 24 hours.  And that was ok.  My son and I talked it over in the restaurant at lunchtime.  I told him we understand it was hard, with so much that is new (we had only recently moved from the house we stayed for the first week of our holiday to this new place with so much to absorb).  He had assured me, “I am not going to have a meltdown at you Mummy”.  I so much wanted him to be able to keep that promise.  That is why I sat by that pool for an extra two hours.

The holiday has been not easy, but not impossible.  The first day it nearly ended before it really began.  Our drive that was supposed to take four hours took nine (in part due to traffic, in part due to the fact we simply could not travel with our son as dysregulated as he was).  That day was perhaps the worst we have ever had – a full blown public meltdown in a roadside café with picnic tables surrounded by tiny stones that were oh-so-easy to scoop up and throw.  We were all a little stunned and sad.  I was wondering if I would need to take him home on a train.  But we picked ourselves up and continued.  As usual, the benefits outweigh the hard parts.  We suppress our sadness that he finds it all so difficult, because we see he also feels great joy in these new experiences.  Watching him conjuring the waves is the stuff of lifelong memories.  He runs into the water up to his waist, stands defiant in the face of the sea, and like a conductor motions for the waves to rise and fall, giggling when the waves inevitably win as he cartwheels away from them.

Suddenly the summer seems too short. These opportunities seem too few and far between.  It has been so nice to see our son (relatively) unstressed now that he is not gearing himself up for school every day.  I dread having to shop for school uniforms in two short weeks.  I don’t want to see the tension creep back into his now suntanned little body.

So, seriously, if he wants to swim a while longer, why not?  OK, sure, next time, I will be ready.  Parenting a child with FASD demands we suit up and remain prepared for all sorts of unanticipated situations – including those moments of joy that present themselves if only we are flexible enough to allow them to unfold and proactive enough to tuck away their sweet memories for those hard days that also will come.  Carefully, slowly, we sweep away the negatives – not through denial but through choice – and prepare the foundation of positives upon which he can build his life.

Extended Family Can Do Tiny Things To Help FASD Families Struggling This Holiday

AuntieTinyThingsBy The Auntie

I’m learning (slowly).

You may have noticed a recent increase in tension and a feeling of impending doom in your FASD mums and dads. If you haven’t, then they are hiding it very well and not letting on (they do that!) If they tell you that everything is absolutely fine and they are looking forward to the near future, they are lying.

Why? What’s the matter?

One word.

Holidays.

They’ve arrived and mums and dads have six long weeks stretched out in front of them with nothing to occupy the little ones and still having to hold down jobs. These kids manage (or not) to hold themselves together whilst at school, but when the holidays descend there is an additional 7 hrs each day that already frazzled parents have to get through.

I have said before that just popping in for coffee can change the atmosphere in a house and can head off an impending meltdown. I’m here to remind you today that you can very much support your FASD family by doing a tiny thing.

Today I took advantage of free child labour and took SuperT to my allotment where he helped me dig potatoes, harvest radishes and beetroot and pick runner beans.

And I’m learning.

I know now that before he can dig potatoes, he has to tie today’s hairpiece just so, or it will get into his eyes.

I know that he is really, really trying to dig the potatoes properly and is not deliberately chopping bits off with the trowel.

I know that the big fork is too big for him to use properly, but using it to check that patch of ground for any potatoes that I missed (without doing any damage) makes him feel like a grown-up, big boy.

I know that I have told him a million times that those particular blackberries belong to someone else, but they are too delicious to resist, so I take him to my friend’s allotment who has a blackberry that I know she won’t mind me raiding, just once.

I know that the watering can is filled so that I can water the lettuce and radish, but actually it’s more fun to water SuperT’s hands.

* * * * *

I love the way that he shouts “POTATO” every time I uncover one, collects it from the ground and (after I told him that throwing them might bruise them) places them very carefully in the bag.

I love the grin on his face when he sees I’ve written “SuperT’s Potato” on a label for the little potato plant he’s put in the ground (I’ve no idea whether it will grow or not, but that’s not the point)

I love the way that he measured the runner beans I have picked against the ones still on the plant to see if it is long enough to pick.

I love the joy in his eyes when he realized that, as we were leaving, I had stopped the car in the track outside the allotments to let him jump out and pick wild blackberries (well they probably belong to someone inside, but outside, I think they are fair game).

I love the fact that I “have the best allotment ever!” And he was, literally, full of beans!

And when I delivered him home, dad was having a much needed doze, mum had been able to get some work done and he was in a much better mood – possibly even avoided a meltdown.

None of which I knew when I collected him. I had just listened when mum and dad had made impending doom noises about the holidays and knew that something little from time to time can make a difference. I was just after some free child labour, but what might have happened is that a possibly dreadful day melted away, rather than melted down.

You CAN do it.

__________________

A comment from @FASD_MUM:  This post really makes us smile. The day was going nowhere good, fast. The knock on the door was so welcome, and our son so excited to have his time with his auntie. He came home relaxed and proud to show us the runner beans, beetroot and potatoes. It was like night and day, the 90 minutes reprieve helped relax the whole house. The Auntie’s example is a quick trip to her allotment, but it could just as easily have been a walk in the woods, a romp at the playground, tossing a ball back and forth, splashing in puddles, a hot chocolate in a coffee shop. It doesn’t really matter whatever ‘it’ is. Our guy still craves one-on-one attention. And it is lovely to watch their relationship grow a little deeper every time they have these adventures. On behalf of FASD parents everywhere, I urge you to pick up the phone and ask if that little one might like to go for a ______. (You can fill in the blank.)