Is this the real life or is it just FASD?

Today (the 9th day of the 9th month, representing the nine months of pregnancy) is “International FASD Day”, so I felt compelled to write something about FASD (fetal alcohol spectrum disorder).

Each International FASD day brings with it a mix of feelings:

  • Love of our son who has to live every day fighting to understand and to be understood
  • Hope that the message is getting through to the mainstream that the difficulties our children have are entirely preventable and don’t need to be repeated in generations to come.
  • Despair that a lack of understanding from professionals and press allows misinformation to precipitate.
  • Frustration that the message “no alcohol, no risk” is being interpreted as a nanny state message that restricts freedom of choice, rather than as a recognition that nobody can predict how alcohol will affect an individual or the offspring growing inside them, so it’s safest to remove all risk rather than using guesswork.

The hardest thing about having a child with FASD is the second guessing.

As well as a diagnosis of FAS (fetal alcohol syndrome, one of the disorders on the FASD spectrum), our son has a diagnosis of sensory processing disorder (SPD) and another of attention deficit hyperactivity disorder (ADHD).

As I see it, when looking at his SPD and ADHD:

  • They might have occurred regardless of alcohol intake whilst he was in the womb;
  • They are a direct result of pre natal alcohol exposure; or
  • Some combination of the above.

The problem is that we will never know which is the case, which complicates the approach we should use to support our son and mitigate these presentations.

428 conditions co-occur with FASD – who knows how many more we’ll encounter as we support our son?

He’s had a diagnosis of FAS since he was 2 years old, but it’s only now that the ADHD and SPD are coming through that professionals are taking notice – providing medication for ADHD (which seems to be still in the stressful, frustrating trial and error stage), and extra resources for the SPD.

The frustrating thing is that we’ve been asking for this help for ages, but lack of knowledge/understanding of FASD has meant that it’s only when the co-occurring conditions come through that we’ve got the help we’ve been pleading for.

It’s simply not good enough.

FASD is entirely avoidable and preventable. It’s also very real, and out there – the conservative estimates of 2% of babies are born with FASD are frankly 2% too many.

Families, friends, support networks, and most importantly, those with FASD need more.

We need more support and awareness of FASD from the professionals we ask for help.

We also need to support the decisions of women whilst providing more education about the possible effects of alcohol on an unborn child. Stigmatising anyone is counter productive.

We need to recognise that past advice (e.g. drinking stout for iron) was based on evidence available at the time and is outdated, whilst not laying the blame at anyone’s door.

There may not be enough evidence around the risk of consuming small amounts of alcohol whilst pregnant, but is it really worth the risk? Quite simply, no alcohol = no risk of FASD.

If enough is done then we could all but eradicate FASD for future generations, and provide vital support for those already affected.

Advertisements

Alphabet soup

Today our son was officially diagnosed with ADHD (attention deficit hyperactivity disorder).

Four more letters to go with his other diagnoses of SPD (sensory processing disorder) and FAS (fetal alcohol syndrome).

We’re also expecting him to be assessed for ASD (autism spectrum disorder), though the outcome of that is uncertain.

Each of these diagnoses tells a story about our son, how he perceives the world, and how the world perceives him:

  • Why won’t he sit still?
  • Why won’t he listen?
  • Why won’t he do as he’s asked?
  • Why won’t he pay attention?
  • Why is he making that noise?

They also bring with them perceptions/questions/judgements from the outside world about us as parents:

  • Did my wife really drink whilst pregnant?
  • Is she an alcoholic?
  • Can’t we control our own child?
  • Why do we let him be so naughty?
  • Why do we let him play on his tablet?
  • Why are we so strict?
  • Why do they keep repeating themselves?

None of those questions should matter. Most relate to the past – alcohol in utero has caused our son to have organic, irreversible brain damage. Nothing can take that away.

That same brain damage means that when it looks like our son won’t do something, it’s more likely that he can’t do it – quite simply, he doesn’t function in a neurotypical way.

He tries though. He tries so hard. That’s what makes it so difficult if he doesn’t succeed.

Don’t get me wrong – sometimes, in fact often, he succeeds – it is that which masks his brain from the outside world.

Imagine being asked to drive a car (which involves coordination, observation and listening amongst other skills) when you’ve broken your leg.

Ridiculous, right? But you were able to drive yesterday, so it’s expected you do so today.

That’s how it is for our son. Except instead of a visible, easy to understand, disability; his is hidden, and complex.

That’s where the alphabet soup comes in. Not FAS, since it seems so few people are aware of it, and far fewer actually understand it (most of those being carers of children on the spectrum). Possibly SPD, since there are ways to help people to understand how that impacts the way he experiences the world. Moreso ADHD – particularly since it is becoming more widely recognised as a “thing”, rather than just a label for “naughty” children. At least people will have heard of it and are more geared up to support it.

Time will tell whether the alphabet soup is a help or a hindrance. In the meantime, I’m off to a search engine or a book store to understand more about how I can help my son.

The stranger in my pocket

There’s a stranger in my pocket.

More specifically, there’s a photo of a stranger in my wallet.

It’s someone I never got to meet, yet they now mean the world to me.

That photo is of my son when he was one or two years old.

I never knew him then – it wasn’t until he was three that we met him.

The boy in that picture was happy, tenacious and loving, and those around him didn’t have a care in the world.

Everyone was unaware of, or in denial about the challenges he might face as he got older.

Four or five years on, he is still happy, tenacious and loving. Everyone he meets falls in love with him at first sight.

He’s also fighting a battle – to function like his peers, to keep his frustrations in check, and to operate in a world not designed for him.

He is amazing.

He does so well despite the organic brain damage caused by alcohol in utero.

We’ve known for a while that he experiences the world differently to others. Whether it’s making noises to cope with situations; pushing, pulling or prodding too hard; shutting himself off from external stimuli; struggling to follow instructions; or getting stuck in a loop (or vicious circle) and not being able to get out of it.

I’ll never be able to fully comprehend what he has to do to get through each day, but at least now there is some light.

He was recently assessed for, and diagnosed with, sensory processing disorder, and we’ve now added some tools to that ever expanding belt to help him cope, and to help bend the world more into the shape he needs.

Some of those were remarkably simple:

  • A kids table to sit at for meals, craft and work – having his feet on the floor has helped him be grounded;
  • A “wobble cushion” that helps him to sit still;
  • Ear defenders for when it’s just too noisy

They’re all helping in their own way.

Slowly but surely, we’re learning more how to help our son cope in this big, strange world that is not set up to accommodate him.

Now we need to educate those around him. If we can manage that then the future is bright for our son. Easier said than done though, but we will persevere.

Anything is worth it for the stranger in my pocket.

Settling down…

It’s been quite a while since I wrote on here.

Correction – it’s been ages since I’ve published anything on here – I have two blogs in draft that I didn’t get round to finishing: one on FASD (originally written for FASD awareness Day on 9 September!); and one on adoption parties (which I started drafting after watching the series on Channel 4 towards the end of last year). I will finish those at some point!

In that time, I’ve started working in a different office, had a fantastic opportunity to support one of our clients more closely, and we’ve moved into our new home.

Our move was unsettling for our son at first – new home, new school, new city – but he has operated amazingly.

As a family we’re much more settled than where we lived before – a function of having our support network on our doorstep rather than an hour and a half away, my new found happiness with work, and space to talk things through when the going has been tough.

For the first time in ages this feels like our forever home.

Thank you

To my son’s teachers, TAs and everyone else involved in his school for the last 18 months.

Thank you.

Thank you for helping him be happy.

Thank you for always encouraging him to enjoy himself and do his best.

Thank you for listening to our concerns and showing us that we are all a team.

Thank you for understanding him.

Thank you for giving him a safe environment to grow from a baby into a boy.

Thank you for giving him the best possible start in his education.

Thank you for reassuring us that we are helping his education in the right way outside of school.

Thank you for making him star of the week, showing him that politeness goes a long way.

Thank you for challenging him when he needed to be and for supporting him when he struggled.

Thank you for always having a smile for him.

There are so many other things I could add, and no amount of words could ever express them more than just “THANK YOU” for everything.

Unique gifts

Every morning is the same – a face appears in front of mine, followed by the biggest grin in the world, then a kiss, then those magical words “I love you daddy”.

OK… so sometimes that’s all preceded by shaking, prodding and “wake up daddy” (at the crack of dawn, I might add…), but you get the idea.

Then there are the times when he gets excited for bedtime because I’ll make up a story using the “story cube” app on my phone. As long as there’s a lock and a key and the story involves him on an adventure, he’s happy. That in turn makes me happy – I could’ve told the shortest, least inventive story in the world, but he always loves it, and I treasure those moments which are reserved for just the two of us. The more we make up stories together, the more I find myself looking for ways to make them exciting, but also to help them reinforce the security he has with us.

There are times, however, when he seems insecure, or at least, isn’t able to soothe himself. Times when his temper ramps up and we get towards a full meltdown. Times when he’s not got what he wanted,  or has misinterpreted something that’s been said.

It’s during those times that I rediscover the truly unique gift we have – the connection that often helps reinforce our relationship. For it’s in those moments that I need to help my son rediscover calm, re-centre himself and resolve the issues.

Sometimes a tight hug and counting slowly backwards can help.

Sometimes it’s a case of asking “how high” he is, and how can we help bring him back down to earth.

Sometimes it’s sitting there taking a hammering and not reacting.

Sometimes it’s lying next to him with an open hand ready for him to hold.

Sometimes it gets too much and (to my shame) I have to leave the room.

On two recent occasions, something instinctive kicked in and I was able to calm him much quicker than in the past, using a unique gift – distraction, coupled with another – curiosity.

On the first he was screaming and got himself in a loop. When in that state the only thing to do is to wait until he’s calm again to resolve any issues. The usual techniques weren’t working, which is when I saw a possible solution out of the corner of my eye – a tally counter (one of those devices where you press a button and it counts e.g. the number of cars going past). I started clicking away quite quickly, and it got his attention. Within seconds he was looking around for the source of the noise and was calming down. He used the clicker a few times – seeing if he could press up to 100, by the end of which he was back down to earth. The really positive thing was that he recognised the counter as a way to calm himself down, so for the next few days he kept it in his sights in case he needed it again.

Cue the weekend, and he had a meltdown at my father-in-law’s. Again the usual techniques weren’t working, so I picked him up and carried him outside to the fish pond – taking him out of the environment that had caused him to get heated, and distracting him by counting the fish in the pond.

Distraction and curiosity won through in both instances, helping my son regulate himself and recognise how to bring himself down if needed. After both, he said “daddy, I was angry, and then I use the clicker/counted the fish and I came back down” (or words to that effect). It astounds me that, at 5, he recognises that, and pleases me immensely that I’ve been the one on these occasions to help him do so.

My son is a truly unique gift for me, and I hope he sees me the same way.

 

When I were a lad…

I wrote this for my Dad on Fathers’ Day…

 

When I were a lad I looked up to you Dad, and now I’m a dad I still do.

You were, and are, everything I would like to be in a dad:

  • Cool
  • Calm
  • Reassuring
  • Supportive
  • A hero
  • Strong
  • A sounding board
  • Fair
  • Encouraging
  • Taxi
  • Ever reliable
  • Holder of the remote
  • Fun/funny

I now feel proud when someone says “you’re just like your Dad”.

If in life I can truly tick off any one of that list I’ll be proud.

I used to laugh at your “when I were a lad” stories, but now I appreciate them all the more when I share my memories with my son.  I now know that the memories we share are often those we hold dear, and help those we share them with understand more about our past. I feel privileged to know that my son will have happy memories because of the start and support in life you have given me.

Thank you for all you have done for me and my family, and thank you for all you continue to do.

Words can never truly express how lucky I feel to have you as a Dad.

Love always