FASD Warriors

Just love the words of this song, We Are Warriors youtu.be/w6GJoYeSLtQ via @YouTube. Written by @SaugasideT Expresses so much, could be the child, young person, adult or families words. We are all warriors #FASDwarrior #FASD

You shouldn’t judge a book by its cover…

You shouldn’t judge a book by its cover…but I think you can probably tell a lot about an individual by the books on their shelves.

Here’s a little selection of the ones that sit right above my desk. Some are like old friends I go back to time and time again to check things over with and get advice. Others are new comers, and others are the experts who keep me on the right path. The ones that speak to my sole are those written by those walking a similar path.

#LivedExperience it’s not a buzz word as so many might see it. It’s the realities of digging deep each day and facing the world. Walking forward one step at a time. Keeping hope, even in those darkest moments when hope seems to have died along with all other light. Then suddenly it rains, a rainbow 🌈 appears and your back into the sunlight. For some the storms are momentary and passing, for others they seems to last for days, weeks, months or even years. That’s when as caregivers we need community. Others to walk with us, to cheer us on, to shine a light when we can’t pick up the torch 🔦 for ourselves.

I think most people agree that parenting is the hardest job anyone dose. For those of us parenting an individual who is neurodivergent, be that with #FASD and/or another condition, diagnosis or otherwise, we are always second guessing ourselves, trying to put ourselves in the place of our young person, seeing the world from their perspective. For me I’ve learnt that it’s my own expectation and understanding that needs to be adjusted, not trying to change who they are.

We all need more compassion for one another in this world. Adapt the environment not change the person. You don’t tell the plant that’s not flowering to just get on with it and flower, you change its environment, nurture and nourish it, and the plant beings to grown and flowers. The same is true for every individual. So don’t judge what you see on the outside. Don’t judge just by the exterior. The cover maybe masking a lot more going on underneath.

You don’t tell the plant that’s not flowering to just get on with it and flower, you change its environment, nurture and nourish it, and the plant beings to grown and flowers.

At the same time the cover indicates how well worn, used and read the book has been. It tells a story of the book’s journey. Just as our exteriors (behaviours, language, presentation) tell a story of our journeys through life.

So take a look today. What’s on your shelf? What does that tell you about yourself and where you are in life? Do you like me have different piles of books 📚 for different parts of your life? I’d love you to share your book piles with me. I’ll be sharing some more over the coming days.

What’s on your shelf?

I’m me

As many young people received exam results, I’m reminded how that felt all those years ago. The elation of achieving more in some subjects, and disappointment and sadness were I’d achieved less in others. Lots of water has passed under the bridge since then. Many jobs have come & gone. Many things achieved, skills acquired and talents honed. Yet my lasting memory, and reflection is – you are not defined by what you do, say or achieve.

Your value comes from YOU. From within!

Be proud, hold your head high. You’re worth of deep praise and high acylation and this has nothing to do with that which is recorded on a bit of paper. Educate, qualifications, are all great. But they do not define who we are.

Compassions, kindness, integrity, empathy, passion, knowing right from wrong, standing up for what you believe, being and advocate & speaking out for those who can’t. These are the things that have motivated me thus far through life.

And so, as I find myself at a crossroad in my own life, choices to make, decisions, options, opportunities. I am again reminded. I’m not defined by what I do, say or achieve (or the job I have). I’m me.

Consequently learning & FASD – what we’ve learnt…

What do you do when they just don’t want to put their coat on, even when it’s 3 below zero, or in the high 40s (OK we live in Scotland it would never get that high – you get the picture!)?

“OK fine let’s go” – but I always take the coat with me

If I believe they will need one, then why would I leave home without it?

When they ask for their coat, or express being cold, of course they can have their coat 🧥 No long lectures, it’s just pop the coat on, and of we go.

I’m not really expecting any massive learning from the experience – Flipper would never add two and two together unless maybe we’re done it every day at the same time for XX no of weeks (I’m still working out what the XX might be 😂). Buttercup, who has autistic traits, is fixed in her thinking and to try and ‘fight’ or fix that just results in her becoming more stuck and getting dis-regulated.

So yes, the other day, on one of those really hot days, she went on a cycle ride dressed head to toe in black with a thick hoody on. Which when she got to hot 🥵 we helped her remove. But she stayed regulated and so did everyone else, and it was a nice ride out together.

From speaking to lots of people, I know that many people find the whole concept of what I would recognise and call ‘natural consequences’ to be really confusing. I think most of us have been patented in an age when the adults had the final say and a ‘no nonsense’ approach to parenting. That was definitely my experience as a child.

Moving from this punitive / punishment mindset to one of compassion and empathy for some is not easy at all. Believe me, it takes practice.

We live in a world of rules, regulations and guidelines. We are trying to grow and support our kids so they are able to navigate this world.

I am hoping and believing that by using therapeutic and compassionate parenting, we are helping to build their resilience and enable them to navigate this world from a foundation built on self-belief and acceptance rather than fear and disbelief.

Watch this space to see how we do 😉.

Want to write

Well it’s been so long since I put thought to iPad. , Every time I think about it the page is all blank again. There’s been a world pandemic keeping us all busy. Why is it then, even though I’ve not left the house since the middle of March, I seem to be busier than ever? 🤷‍♀️

COVID has brought positives & negatives. We’ve regrouped as a family, been able to spend ‘quality’ time together. I’ve not missed the crazy Saturday morning rushing to clubs, or speed tea making and eating before ensuring everyone is delivered to their after school club. I’ve loved the slower pace to life, and just being the five of us in our home. But some weeks time just seems to have stood still, while the mess around the house has just piled up. I mean, you know no one is just going to ‘drop in’, and there are no planned visitors coming, so no rushing around to tidy up.

The downside of lockdown has been it’s just ‘you’ and ‘them’. There have been moments when we’ve just needed ‘our space’. We’ve all isolated between ‘I’m fine’, and the sky is falling down. Some days, for no apparent reason, my emotions have got the better of me, and other days when I’ve been the life and sole of the kitchen party singing alone to 80’s hits on the radio.

As I reflect I realise I’ve learnt new things about me, new things about him, and new things about them. I’ve not suddenly mastered a new skill, or got to the bottom of the pile of things to do. But I have built memories with my family. We’ve laughed, cried, shouted and screamed. But we’ve also made up, said sorry, drawn closer and strengthened our bond. Coming out of lockdown feels daunting and a little scary. And if I’m honest there is definitely part of me that want it to remain this way. I’m enjoying this new rhythm and pace to life. But we can’t. Life has to move on, things have to change. So as we prepare for the return to school, a change of pass back to the old and the ‘new normal’, I’m also preparing to take these lessons with me. I’m looking forward and planning ahead, while being in the here and now and taking note of the rhythm of family life.

I’m looking forward and planning ahead, while being in the here and now and taking note of the rhythm of family life.

Socialisation: isn’t that what you do with puppies?

One of the biggest, most common fears families have when choosing home education, and the most frequently asked question is ‘how their child will be socialised?’ or ‘what about socialisation?’

“So, one of the fears of families choosing home education is find friends and develop friendships. What are your experiences of this? Any hints and tips?”

I started writing this blog some time ago after a fellow Home Ed mum posed the question above to our online community as a discussion starter. Since responding with my thoughts (reflected below) Miss M has returned to mainstream school. On the whole it’s been a positive experience for us all. It was her choice, and the big driver was the desire for friendships. That’s not to say she didn’t meet people, mix with other kids or ‘socialise’ while being home educated full time, but that’s different to forming friendships – hopefully these will last the test of time and sustain the pressures of life, but only time will tell.

Having home eding for 3 years I now feel there is a difference between socialisation and friendships. To often I think people can mistakenly talk about the two as a collective. Having three children now school age, I’ve witnessed how their needs as individuals have changed & developed over time. I feel they are definitely linked to their characters, chronological and emotional ages, gender and preferred learning styles.

A quick google search reveals the dictionary definition for socialisation and friendship to be distinctly different. The first is about social norms and fitting into these ‘norms’. The second is a more heartfelt need for us to connect to our fellow humans through relationship and mutual respect.

I’ve witnessed our children grow in confidence to be able to enter any space with a mix of children and adults who they may or may not have previously met. After the initial appropriate hesitation, they are able to engage with others, talk, play and get along. This is the positives of home education. And I remain convinced this is not what mainstream school develops or offers. Now having a child who has returned to the system, I’ve been proud to look on and see how she has navigated this new situation with a confidence her peers in that situation do not appear to overtly possess. Her teachers keep commenting on her courage and confidence, and ability to talk to other, speak up and contribute.

Friendships has been much harder especially for my girls. Having once been a girl myself, and even now as a grown adult I recognise the need and desire to have close friendships with others, especially other females. I think it’s normal for us to want to have a group of people in our lives who we share our worries and concerns, hopes and desires, and the ups and downs of life with. Building these relationships take time. Thats time together connecting and sharing experiences, investing the world, and time the frequency of those interactions. This is the critical element for me.

I don’t believe this is the same as just spending time together in the same place/space with a group your own age or mixed. After all, if it was that easy, as adults we would automatically be ‘friends’ with every colleague our own age. Clearly life, work and society are not structured in that way. The workplace provides adults with the opportunity to socialise and form friendship with a wide range of individuals from a mix of ages, socioeconomic backgrounds and genders.

The opportunity for the deep connections to take place on a regular basis to foster anything other than a passing friendship for my girls has been tricky.

Within the community we live/engage there are not any other girls the same age (chronology or emotional) as my eldest, and a limited number the same age as my middle.

Even when there are children a similar age to yours it doesn’t mean they will necessarily become friends. And the truth is even if they do find someone they could develop a friendship with, maybe you and their parents won’t automatically be connected to one another. Therefore, making time and opportunity for your child to develop that relationship/friendship in reality maybe restricted or not possible.

If you are able to attend regular meet ups with a mix of others who are also commit to attending regular great, but that’s not happened for us on a consistent basis many reasons, some our doing, and some others.

Geography is a genuine issue for those living in more rural communities. I could choose to go to things further a field but it can literally take two to 2 and a half hours to get there. Who wants to travel in a car for that long with 3 kids, not me!

So in conclusion, no I don’t think socialisation is a problem in home educating. I do think helping our kids, and ourselves to form lasting friendships within the community is a challenge. I am however eternally grateful for the lovely women (and men!) I’ve connected with who I call my friends. I wish distance, time and conflicting priorities didn’t prevent us from seeing one another more frequently. But when we do, like any true friendship, it’s like we just left off yesterday.

Keep stepping forward

Oh precious pictures 💕I have a lot of these now. Some still, some active, others marking a special moment. It’s amazing how quickly those little toes become big feet 😍 Enjoy every step, some mountains are easier to climb than others, but the top is always worth it #adoption #FASD #stepforwardtogether

Thought for Mother’s Day

Today I’ve been blessed in so many ways. 😍😍😍😍 on Mothering Sunday and every day, we love all our children beyond words can truly convey, but these sum it up so beautifully 💕💕💕

Seeing in coloured lines

I’ve sat in many a workshop, support group, meeting and heard other parents talking about the moment their young person chucked, hit or throw the TV. Increasingly I’ve found myself quietly telling myself “it’s only time before that’s us”. That time came this week.

It wasn’t as a result of ‘No’, being asked to turn the TV off, or another person igniting an escalation trigger. This week the TV took a bash from a DVD box in response to the program having ended. TV – 0, DVD – 1.

As those of you who follow our story will know, we love a super hero in our family with FASD. One of the largest challenges for our young person is their inability to control their impulses. This can manifest its self in multiple ways.

The impact of pre-birth exposure to alcohol on their brain, means they just don’t always follow what might be recognise as an obvious reaction/response and way of dealing with an every day event.

They struggle to us the executive functioning part of the brain to be able to link cause and effect and learn from these experiences. It’s not that they can’t recite what they should or shouldn’t do when questioned. They just can’t access that information in the moment. The fight, flight or fear response seems to take over.

So here we are watching the TV in multi colour, just split across all the lines on the screen. What have we done. Immediately – nothing. A new TV will have to wait. How did we deal with the immediate fallout? Daddy Bear was on duty that day. All account are he did a sterling job. Employing all principles we’ve taken onboard through Connective Parenting/NVR (non violent resistance), Therapeutic parenting , DDP and PACE. Remaining calm ensured that additional escalation and fall out were avoided; although other children were losing the plot at the realisation that family viewing had immediately been lost. All did not descend, and calm was soon restored to all.

Mirroring (demonstrating) the behaviour and reactions we would like our children to develop takes time to impart. It’s not a quick fix option, and not easy to do. But this event has demonstrated to us that: by maintaining our parental presents with our children; showing that unconditional love and acceptance; staying connected; and using reconciliation gestures; we are underpinning the message that our relationships with them and one another are our highest priority.

Our wee person can’t help the cold hard fact that their brain has been permanently damaged as a result of exposure to alcohol and drugs pre-birth. Yes, they struggle with some relatively normal day to day activities that a neurotypical children of their age would not. And yes, we do experience some challenges within our family as a result of their exuberance for life, combined with their inability to filter or determine what is and is not a good idea/action/response.

All that said, we strongly believe we are seeing progress. Sometimes small steps, sometimes it feels like giant leaps. The days are long, the years are short. Above it all we are seeking to maintain our relationships, and each individuals sense of self. With trust and hope that together our futures are full of colour and bright.

Small steps, big moment!

Today was momentous day – Flipper wrote his own name, on the lines, on a sign in sheet at an event we were at – proud Mummy and Daddy moment!!🥳🥳🤩