Be an Adopter

Be an adopter!

By MB_FASD

It’s National Adoption Week and the theme this year is “The Adopter”. Since that’s me, and my wife, and also my mum, I thought I’d write something for the occasion. Hopefully, some of you out there thinking of adopting will find a spark here, some inspiration that will confirm that for you adoption is the right thing to do. I really do hope so. Adoption is a wonderful experience. For you. For your child. And for all involved. As long as it’s done right.

First of all, do it for the right reasons. Be sure you’re not wanting to ‘save’ a child. You’ll hear from friends and family that you’ve done a wonderful, charitable thing by giving a home to a needy child. If that’s your reason, don’t adopt. Adopt because you want a family, or you want to complete your family. Because you want the love and joy a child will bring into your life and have plenty of your own to share.

Secondly, understand that adoption has changed from the old days, when those of us who were adopted as babies were likely to have been given up by single mothers shamed into allowing us to be adopted by the dark, somewhat unforgiving social mores of the time. We were largely newborns, healthy and (at least in my case, handsome and adorable 😊). Those kids available for adoption now are still adorable, but they’re unlikely to be newborns and their pathway to adoption is different than mine. They will have suffered neglect, early life trauma, may well have a disability and/or other health issues. They may have an attachment disorder. Or, and here’s why this blog is writing about adoption, they may well have a Foetal Alcohol Spectrum Disorder (FASD).

Statistics on FASD are not good amongst looked after children up for adoption. The condition is very much under-reported, under-diagnosed and poorly understood or recognised by midwives, social workers, GPs and even Paediatricians. A study in Peterborough showed that 75% of children available for adoption had been exposed to alcohol in utero. That doesn’t mean the kids have an FASD, but the risk is there, and it is significantly higher than for the population as a whole.

As an adopter, bringing a child with FASD into your life will be a huge change. Our son has brought music and performance into our home. He takes us to places we would otherwise not go. He has brought the widest smiles of joy. He has taught us much about ourselves and our capabilities to care.

But it isn’t easy.

Kids with FASD have executive functioning deficits which means they constantly need help to organise themselves through life. Many have learning disabilities. They have sensory needs that are difficult to meet. They can meltdown with a depth and severity that is extremely hard to manage. Doctors fail to recognise the condition. Social workers don’t write up maternal alcohol consumption in notes, making diagnosis harder later on. Therapists of all kinds don’t know about FASD and struggle to adapt their services for our kids.

To be an adopter, you will need deep reserves of resilience and humour and love to do everything your child will need, and everything your wider family will need. You will have to possess a desire to learn all you can to support a young person, and to show your family, friends and the professionals in education, medicine and social work how to support him and you.

Society also needs to better support adopters who make the decision to adopt a child with FASD, or one who may well have the condition (you might not know for sure since FASD is so under-diagnosed). To be an adopter, you’ll become a campaigner for recognition of FASD in the educational system. You’ll become an advocate for the wider needs of families with kids with SEN, things like more respite breaks (or indeed access to respite breaks at all!!) and for the reasonable adjustments all institutions should make for kids with a disability under the 2010 Equality Act. Sounds scary, but it’s doable. You’ll be a better parent for meeting the challenge.

So, be an adopter of a child with an FASD. Go into it with eyes open. Read up about FASD. Join support communities like FASD UK’s closed group on Facebook. Get materials from NOFAS-UK and other groups working on the condition.

And if, after a good hard consideration of the idea, you think you’re up for it don’t let four letters and all they mean deprive you of the love a child with an FASD can bring into your home, or stop you giving them the loving home they need to thrive.

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For more information:
National Organisation for Foetal Alcohol Syndrome-UK (NOFAS-UK)
Adoption UK

FASD, Teens & Technology – What’s a Parent to Do?

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By MB

A theme kept popping up at our support meeting recently. It provoked, as it always does, a lively series of comments with distinct points of view. Do you let your kid/s have access to technology. How much access?

It’s something we thought long and hard about long before our younger son was diagnosed with FASD. His older brother loves his tech. He’s a good programmer. He’s a skilled gamer. His understanding of tech is strong and his interest high. So little brother was introduced to computers early on. And we had decisions to make about screen time.

Managing kids’ access to technology is a difficult question for all parents. How much time to allow your youngsters on their phones, on games consoles, watching TV? When do you let them have a phone? How do you keep them safe online? How to manage social media when bullying, sexual exploitation, financial fraud and other issues are so rife?

How much harder are these things to manage with an especially vulnerable group of kids like those with Foetal Alcohol Spectrum Disorders? How can you keep a child safe online when their ability to read social cues is, at best, extremely limited? How can you prevent a child becoming obsessed with an app or a game when repetitive behaviours are a known feature of their condition? How can you keep a child from seeing inappropriate videos when their ability to search for material and use a device far exceeds their capacity to understand what they might be about to watch? Is it wise to give hundreds of pounds worth of phone, or tablet, or laptop or console to a child who can suffer from meltdowns at frustration and risk breaking them?

Neither the questions nor the answers are simple, and they vary child by child and across family circumstances. There is no right answer. But, for what it’s worth, here’s how we have managed things with our 14-year-old with FAS.  First of all, we gave him simple rules: not too much skin, no rude words, no violence no talking with people you don’t know in real life. By and large, for the moment these still work. He explores the edges of the rules, but doesn’t jump in and swim past red lines. He internalises what is right and wrong in a fairly rigid way, and has done this also with online life. Even to the extent that, when watching his favourite band Little Mix, he won’t watch videos of them dancing “dressed in porn”, as he puts it. (Not quite sure where he picked up that word, probably an internet safety class at school.)

So, as long as he follows the rules, we let our youngster have more access than many would think is wise. But for him it works. It isn’t perfect. He has, in frustration or in the midst of meltdown for other reasons, broken phones, tablets and bluetooth speakers galore. This is the easy bit. The organic consequence when something gets broken is that he is without it for as long as it takes to replace it. And we don’t hurry replacements. Everything carries replacement insurance. Either the Amazon Fire for Kids (which they really do replace without asking why) or just phone insurance that pays for the next when a phone is broken. The consequence of delayed replacement is important, it follows naturally from the breakage and emphasises that this is something that can be accepted as resulting from a symptom of FASD, but not otherwise. He broke a laptop two years ago and we are just now thinking about replacing it.

For us the type of device acceptable was also easy. All of them. Any of them (within our budget). They each have a purpose, a different use and each can be valuable in its way. The Wii is now an ageing console, but its games still have a place in our son’s life. They tend to less violent, less scary – much more suitable for him than many of those on offer on other consoles. From the simplicity of Wii Sports, to the deductive reasoning needed to complete Lego Harry Potter or one of the Hannah Montana games, it’s amazing to watch as his thought processes strengthen as a result of puzzling out parts of games involving characters he loved. These were, genuinely, life skills he was learning. For fun, he learned to make movies with one game and to sing his favourite songs with others. The Wii will probably soon have to be replaced with a Switch, but its role will be the same.

His tablet, restricted to appropriate content, was a real boon too – before it was broken. (Still not replaced.) For our son, a cartoon like Tom and Jerry can be a tool for building social awareness. He showed us a picture of an angry character with a bright red face – “look, that’s what I feel like sometimes!”. He learns social lessons from his favourite YouTubers. Their extreme actions, looks or sounds show him the boundaries of acceptability. He watches things time and time and time again, figuring out what is socially acceptable and what is not. He also made hundreds of videos of himself making faces, saying things different ways – we believe this was his way of exploring how to act in situations. For a kid who finds social cues hard to read, this kind of education is vital. He doesn’t really watch much TV. He has a mini-DVD player and watches movies at his own pace, in his own way.

From his phone he gets music. The love of his life. Streamed music. He uses it to calm himself. In an evening after school he will rock in his bed to loud, loud music. Calming himself. Erasing the stress of the day. Building down from potential meltdowns. It matters so much. The phone also works to connect him to friends. Being with someone can be hard for him. Sometimes joint activities don’t go well. Social situations can be hard to navigate. Rigid thinking can bring tensions. Kids that both have multiple disabilities can easily misunderstand each other. Being with them across a distance of miles on FaceTime can be easier. We hear him joking, laughing, talking, enjoying friendships. It doesn’t mean it’s always perfect. One friend couldn’t understand that calling repeatedly as late as midnight wasn’t ok. But, overall, it’s a tool that helps build relationships. It could be dangerous. While he doesn’t (yet) break the rule about linking with strangers, he has been very happy when social media accounts linked to popstars or TV personalities have sent him messages, after he left messages for them. The risk of inappropriate contact is there. And for a child with delayed social development, the risk is heightened. So we talk to him about who he is talking to, and we have access to his devices. We work at keeping him safe.

It’s not just at home that technology helps. In school, the use of a netbook in lessons helped our son to focus before lessons. Typing allowed him to get ideas from his head to the page in a way that handwriting never did. Suddenly, instead of a line he could write a paragraph, as he could type quickly enough to express himself, whereas he couldn’t hold an idea in his head long enough to write it out with a pen.

And this is the future too. The role of technology in our society is growing. It surrounds us, penetrates our lives in ever increasing ways. He will use phone apps to manage his life. He will be able to speak to his phone to find recipes, generate a shopping list, buy groceries online, do other shopping. He already relies on YouTube videos for instructional videos for everything from slime to hairstyles to recipes. Microsoft Office has built in voice recognition software he’ll be able to use to read documents, write them, send emails and more. He will be able to manage his prescriptions and doctors’ appointments through an app, we do already. We are at the beginning of mindfulness apps that help people manage stress and anxiety and contribute to reducing the possibility of meltdown. All this will help him build a measure of independence in adult life that would otherwise be impossible. The opportunities are, at present, seemingly almost limitless.

We’re not naïve. We are aware of the dangers. We guide our son to use online services and entertainment as safely as possible. We know that for many the use of screens is a huge problem. That obsession with online content is a real risk. That there are predators. That some are unable to have access to games with in-game payment safely. We know that what I have described is our reality, not that of others. If things change, we will change our rules.

We have chosen to work hard to help our son access technology because for our kids technology is the future. It can help them navigate life with FASD. It can be a massive support. They will have to deal with it as it becomes omnipresent in all walks of life. Our job is to help our son do so safely, to help him thrive. In the meantime, if you stumble across his YouTube channel, give him a like and leave a positive comment, it means everything in the world to him.

Take Care

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By MB_FASD (and a side note from SB_FASD)

And so, from hour to hour, we ripe and ripe.
And then, from hour to hour, we rot and rot;
And thereby hangs a tale.
(As You Like it, William Shakespeare)

I like a good Shakespeare quote, and this one fits the circumstances of the past couple of weeks, at least for me.

Parents and carers of kids with FASD are busy. So busy. There’s never enough time. There just isn’t. For us, when you aren’t dealing with the day to day, then there is the relationship with school to manage, or appointments at the doctor, a seemingly endless round of trips to one hospital or another, from therapist to counsellor, from consultant to nurse. Even the extra loads of washing take time.

The supervision of the day takes a huge amount of energy, and at almost any time, a meltdown can bring everything to halt for hours while we help our young man to re-regulate and things can get back to (FASD) normal.

When you combine all this with work, the rest of the family and everyday life, time is squeezed. There just aren’t enough hours in the day. So things slide. Sometimes important things. That’s what’s been happening to me. I let things go by that I should have been noticing, or I did notice but didn’t pay attention to. My wife worried at me to look after mysef, to get some checks done. And I brushed her advice off.

Sinking into the sofa exhausted at the end of the day, every day, had become my normal. Having a little afternoon nap had become normal. I got extremely thirsty all the time. I felt below par every day. This was my normal. And I wrote it off to the stress of living with a child with FASD (and another with chronic fatigue).

I did nothing.

But, it came back to haunt me. Just like the advice on the aeroplane, if the oxygen mask falls then put your own on before trying to assist others, I should have been taking care of myself.

A couple of weeks ago I went to the doctor complaining of a persistent cough, which had lasted since a virus knocked me flat in February and triggered my asthma. She asked a lot of questions, and sent me for blood tests and chest x-rays.

Fast forward a few days and the doctor’s surgery calls and tells me to come in that morning. An hour later she tells me I have Type 2 diabetes, and after discussion, I have probably been in an acute phase of the condition for at least 18 months. Looking at the blood sugar results she tells me it’s ‘a bloody miracle’ I’m not in a coma.

Later, with the diabetes nurse, she shows me how to use a blood sugar testing monitor. The result is too high for the machine to read – it just says “HI” on its little screen, meaning my blood sugar is over 33, when I’m aiming for 8! For good measure I need to get my cholestorol level down. And lose a bit of weight, although I’ve lost two stone since the doctor last weighed me as a result of the untreated diabetes.

Back home, my diet changes immediately. Gone are the carbs, salty and sugary items that made up a lot of my diet – and that includes the grapes and yogurts I was eating a lot of. Convenience eating is a thing of the past. Everything is measured, considered and prepared from scratch. My wife is delighted about this bit, and a Mediterranean Cooking for Diabetics book appears immediately. She gets to cook all sorts of things she loves!

Two weeks on (with the help of some meds) my blood sugar is low and relatively stable. I’m learning to live with diabetes and starting to feel better. I’m not getting up two or three times a night to pee. I’m feeling more rested from a night’s sleep. I’m less prone (I think, check in with my wife) to being irritable because of fatigue. Things are on the up.

This means more energy to deal with the things that life throws at you. More energy to look after our son. I’ve started taking care of myself, and it means I am in two short weeks, better able to take care of him.

And that, in a nutshell, is the moral of the story. Take the time to take care of yourself, so you can take care of the others in your life. And how necessary is that when you have a young one with FASD in the family. They need you to be at the top of your game. Every day.

Listen to your body. Act on the signals it sends. Try not to “rot and rot” as the bard put it.

Take care.

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A note from SB

I knew he was sick. He says I “worried” at him. It was more than that. I knew what I was seeing, my father had diabetes. Combined with high cholesterol and heart issues, diabetes took my dad’s foot and contributed to years of very bad health leading to an early death.
 
I was scared by what I was seeing.
 
And yet, the days and weeks and months and possibly years passed. I cannot tell you how guilty I felt when I realised not just that he has diabetes, but how serious it had become.
 
Because of FASD, we are faced every day with the kind of in-your-face urgent issues that cannot be ignored. Of course we are tired. Of course we are snappy with each other. Of course we feel down. Of course we take short cuts. Our interactions have been curt and far from the hours-long discussions we used to have about issues big and small. I felt he was being selfish by not looking after himself. I felt he was whinging. I grew up in a “if-your-cut-hand-is-not-falling-off-keep-playing” kind of large family. I had told him (repeatedly, and even in front of his mother a couple of times) what I thought was wrong. If he chose not to act on it, I was not going to nag. 

Except I didn’t grant him, my partner in this life, the same courtesy I grant to our child with FASD.  I never thought he was as badly affected as he is and that a medical condition might be underlying behaviours. I nearly cried when one of my sister-in-law’s friends who has diabetes said that she had never heard of anyone having readings as high as his and that this must be making it really hard for him to control mood swings. I didn’t for a second imagine his outbursts that threw me through the roof myself might actually be due to blood sugar swings. I didn’t think his behaviour might be a symptom too – and that is the mantra of FASD parenting. I should have trusted my lovely husband enough to see this for what it was.
 
I feel guilty.
 
Deep, deep guilt. 
 
I am surrounded by people who have medical conditions that are demanding. Diabetes. FASD. Chronic Fatigue Syndrome/ME. I am certain the stress we all live under is playing a negative role in all of this. I myself was in hospital a couple of years ago with neurological issues.

This life is not easy. There’s no outlet, no fun, no release. Or at least we don’t prioritise finding ways to lighten our load. I always feel there is more I should be doing. And now I need to learn about carbohydrates that convert from sugars and figure out how to integrate new foods into a home where one of us has major sensory issues related to food. I am a short order chef these days, making multiple foods. More pressure. (Yes, I bought the Mediterranean Cookbook for Diabetics, sure, but I have yet to read it.)

The pace is relentless. But if you are reading this, most likely you are familiar with it.

We are not alone. I know of too many individuals and families coping with FASD where the stresses drive peoples’ health into the ground, where relationships get torn to the point of no return, where depression takes hold. 

We have to do better. As my husband says above, we have to “take care”.  We have to take care of ourselves and we also have to take care of each other too…maybe a bit more aggressively than the British culture is comfortable with. Maybe we need to force those difficult conversations. Lives are at stake. This isn’t optional.

I am glad he caught this before worse harm was done. I am thankful it’s something we can manage. He didn’t mention above that they also were screening for cancer at the same time. There is a reason why we haven’t posted a blog post in a little while. It’s been quite a ride around here lately. 
 
…now, where is that reminder about the smear I was due for ages ago…?

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Small Change Adds Up

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By MB_FASD

Things can only get better. Is that right? Is that how it works for families with kids with FASD?

Well no. Of course not. Things are quite often decidedly mixed. But they can change for the better. Nothing is static in life, and with appropriate supports and better understanding of the child, the condition and how to help, things can improve.

Take our son. He’s thirteen now. A year ago at this time, he was in crisis. Life was too much for him. He was refusing school a lot of the time, desperately upset when he did go. He was having daily, twice daily, meltdowns. The stresses on him were intolerable.

So, a year on, how is he managing life? How are we managing? Things are a lot better. We couldn’t change him, so we changed his environment. Also, he’s changing. While he’s socially delayed, he is growing up as all kids do. And that makes a difference. Here’s some examples from this week.

One of the simplest signs both of a growing maturity and of a calmer environment is in our mornings. Previously, we had to be with our son all the time. We had to help him occupy himself almost every minute of the day. Leaving him alone would lead to problems. He couldn’t self-regulate and he couldn’t keep his mind calm enough to do activities on his own. Now it’s much, much easier. Albeit with the help of games on the phone, but also with creative film-making and vlogging, our son keeps himself busy, often for hours on end. Since we both work from home much of the time, this is a positive benefit, and it’s a good sign of how his world is changing for the better.

Another positive development has come through school. We’ve discussed before what a huge change the move to special school was. How it relieved the pressure on our son, and how they let him thrive through the most wonderful theatre and music programmes. That’s all true, and he goes out to his taxi without protest every morning, a far cry from the terrible days of a year ago, even if he wishes for the small netbook his mainstream school let him use in lessons, and moans about “too much writing”. He is still happy enough to go, and is clearly thriving under the care of a fantastic, dedicated and talented staff.

Our little man and his Mum were in a shop this week looking for a drink and some sweets. His mum let him go in alone with £5.00 while she waited outside with the dog.  He looked at the price of the slushy he wanted, and the bag of sweets and worked out that they cost. He then worked out how much change he would have, and before he purchased them he asked Mum if this was ok. To our knowledge, he hasn’t put all this together in this way before. He understands that you have to pay for things in shops, and has sometimes been able to work out if he has enough money, but has never proactively done the maths himself, weighed his options so calmly and asked before spending. That is real progress.

He is learning and applying his lessons to life. It’s tied to school. They have a tuck shop in morning break where the kids are encouraged to bring change and make small purchases. Apparently, it’s succeeding. It feeds in to success in his life skills homework book. He was able to tick off that task as successfully done. Homework that makes him feel better about himself, rather than driving him to tears and despair. That is a novelty. And while its harder than the canteen at his old school (there he paid electronically by fingerprint with no concept of the cost of items), it’s better for him in the long run, as it’s teaching him to cope in real life.

Another example.  This evening, he was partly dysregulated. That’s a word he knows and he sometimes understands that he needs to start using calming strategies or go to a safe space before he has a meltdown. I was offering swimming, but he didn’t want to go. He stated that quite forcefully. Then he started building a marble run. All the while muttering repeated phrases under his breath, most of them bad language. Over and over again. Often a sign a meltdown is coming. And often the plastic marble run pieces will fly as his frustration boils over. I was really worried, but I didn’t want to push him out the door. This usually ends badly. But not tonight. He focused in, and he built two big marble runs. He used a favourite toy to calm himself, instead of letting his feelings overwhelm him. Then he proudly demonstrated his efforts to his Mum and me. That’s real progress. In the past either I would have dragged him swimming to re-regulate through physical activity (still an important option), or he would have had a full meltdown. Now, he’s starting to understand himself. And we let him make the choice. We are learning too.

Two days ago we had to go to Great Ormond Street for a gruelling round of three pre-op appointments for an upcoming hand surgery. A nasty rainstorm had every anxiety ramped up in the drive to the train station.  Before getting on the train we purchased some “lava putty” at a toy shop, and during the whole trip he used this very consciously as a calming mechanism. “I am good with sensory toys,” he said.  And he was.  A few years ago there is no way we would have made it through that day.

None of this means life is perfect. Meltdowns happen. Earlier in this day there were indeed parts of a marble run broken, but we minimised the scene and quickly moved on – to the point that a short time later he was helping to tidy up the mess. The challenges are all very real. We can’t relax our guard too much or things do fly.  We have to work to involve him in family activities, and part of the success in less stress lies in the things we don’t even try to do anymore. We had to let go of expectations. FASD is very real and it affects him all of every day. It affects us too.

But, things are getting better. His world is slowly, slowly changing. We can perhaps start to think about a transition to adulthood that can be managed without devastating trauma. We’ll see. There’s a long, long way to go. He’s growing up, and his world is a little brighter for it – and for the changes we have made in our world to help him, and us, get through the day.

 

Four Letter Words for Help – FASD

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By @MB_FASD

Adoption UK carried out a massive media blitz this week based on a survey that said 25% of adoptions risk breakdown because of a crisis fuelled by the trauma children suffered in early life. Trauma which leads to aggression and violence in the adoptive family. It is a picture that a lot of families with children with FASD recognise, although Adoption UK never mentioned FASD in their media work. While not all children with these issues have FASD, it certainly struck a chord with me.

F**k. B***h. S**. Again. And again. At 7.30 in the morning. Or 7.30 in the evening.

Most kids with FASD lack impulse control. That includes over language. Bad language.(There is some research that says language is stored in a different part of the brain to other language, so this may be related to brain wiring too.)

We have a lot of bad language in our house. A lot. And, following the advice of professionals, we ignore it. Most of the time. We have to. If we didn’t we’d be in constant opposition to our son, in constant conflict that would help none of us.

He doesn’t mean it. A very clever educational psychologist once asked us “Why do you assume intentionality?” when discussing some of our son’s seeming acts of defiance. That struck home. We had been assuming that our son was being deliberately naughty. Oppositional defiance disorder is a thing. Some kids with FASD have it. Our son doesn’t. He just can’t control his impulses while dysregulated or partially dysregulated. So a stream of insults fly.

In the mornings and in the evenings, around the edges of his medication, he is partly dysregulated. And at those times the language comes out.

It’s very difficult. We struggle with this in a big way. I do especially. Not because of the words, but it gets really hard as it’s tied up in his refusal to let me help him much of the time. It feels like a strong rejection. (My wife tells me I am not seeing just how often these same words are used in her direction.)

But when addressing me, he always wants Mum. At least, when Mum’s there that’s how it is. He calls for something. I go to his room, and get a string of expletives and what feels to me like rejection.

I bring him food, and he won’t even look at it because I breathed on it. Happened just recently, I made mini-cheeseburgers to eat but I breathed on the food. So it’s covered in germs. Sometimes the reaction is physical and can hurt, but the actual blows are the easiest to take, it’s the emotional ones that are harder to shake off.

It’s really hard not to take this as rejection. I know that many times I don’t do a good enough job of showing that I’m relaxed. That I’m not irritated. That the bad language washes over me. Which generally it does. But the constant pushing away his harder to deal with. At a certain level it hurts.

I know he doesn’t mean it because he often does let me do the foot rubs and the leg scratches. When Mum is away, or just out, then all of a sudden my attempts at cookery are suddenly acceptable, and my help with the latest project really needed.

Our son isn’t proud of these moments – he apologises after the fact, he comes back to build bridges.  He stays close.  (He once famously told a deputy headteacher that he had been dysregulated when he cursed at him, he couldn’t help it then but he was sorry – a pointer to the fact that, with self-awareness, change happens).

The ways in which aggression can manifest itself are complex.

In a drive to highlight a very problem, and look for government action to support adoption, Adoption UK risked leaving an extremely negative picture which will undoubtedly put many people off adopting. As an adopted person myself, I would have done it differently. I would have painted the picture as bleak as it needs to be, but then softened it with hope, and a perspective.  In our house we have elements of all of those things that were splashed across the media following the results of the survey.  It’s not that we don’t get it.  But because we know the reason for our son’s behaviour, we frame our approach accordingly.  Importantly, we have a diagnosis in place as we head into the coming teenage years, something the experts say is vital to chances of a successful transition to adulthood.

Once you reinterpret the behaviours as a symptom of the condition, and learn strategies to address the underlying need, the sense of crisis diminishes.  A year ago we were in an intense period of crisis but things can turn around.

If you can’t change the child, then you have to change the environment around the child. You have to reduce reasons for anxiety. You have to adapt their environment so they can live as calmly as possible as much of the time as possible in that environment. You have to give them the time they need to adjust to change, whether that change is getting dressed for school or moving from one activity to another. We’ve changed his room, put in a quiet space and let him have disco lights that calm him. We let him dress how he wants to go out, not how we would like. We adapt because he can’t. And we’re lucky, friends and family have adapted too.

Things have got much better with time as we have learned to do this. He has learned as he gets older to begin to understand his triggers and to ask for help. He has been helped definitely by meds for ADHD.

No child is unchanging, nothing lasts forever. Situations change. And we have to change along with them. I have to do better at soaking up the bad language, and helping guide our son to a calmer place when dysregulated.

What’s the f***ing choice?

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P.S. – Support is available for families who are struggling.