Christmases Past, Present and Future: An FASD Story

Blog Christmas Past

By SB_FASD

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

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

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

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

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

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

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

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

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

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

I was so proud of him in that moment.

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

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

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

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

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

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

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

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

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

****

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

Be Angry, But Not at Those with FASD

Blog_Angry

By SB_FASD

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

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

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

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

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

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

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

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

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

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

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

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

They will gain experience needed to become self-advocates.

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

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

If you don’t, who will?

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

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

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

 


P.S. – You are not alone.

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

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

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