My essentials in our homeschool!

Hiya; I thought I would share with you what I’ve found to be the most ‘important’ resources and sites in our homeschools (for anyone new to home educating, or considering it).


  1. Brave Writer; I wish I had heard of her from the beginning! I honestly feel the brave writer website and podcasts have transformed our homeschool and our lives. It has helped bring more focus, fulfilment, structure and achievements and yet also more calmness, laid back attitudes and beauty into our days. I pretty much binge listened all her podcasts in one week (their so uplifting and inspirational) and began implementing ideas like morning basket, family read aloud time, poetry tea times, family film sessions. We are beginning her Jot it down programme in the new year and then the wand and quiver of arrows in September (once hopefully we’ve gotten our feet under the table with the new routine). If you love the Nordic idea of hygge then Brave writer is all for you! It’s more then just a writing programme; it is a whole way of life. You can check out more at
  2. Facebook home schooling groups; there is pretty much a group for everything on Facebook now, and one of my greatest resources I use are the local, national and international home schooling sites. On these I can find local groups and activities, ideas for lessons and curriculums and also run past ideas or problems with others in the same boat!
  3. Twinkl; it’s a resource site teachers and schools use which is also on offer to homeschoolers. They pretty much have work sheets, crafts, PowerPoint presentations and even stories for pretty much every topic you can think of! There are sections for if you wish to follow the national curriculum, or go by age group, or just search for random topics you’re following (which is what I tend to do). When our subscription ran out earlier in the year I tried to go without it for a couple of months and it was a complete nightmare as took so much more time trying to put things together for lessons.
  4. Pinterest; this is my go to for EVERYTHING. Literally I have board ideas saved for every brain fart I’ve ever had; to be fair I really look at them again BUT it’s great for gathering ideas and inspiration for different topics or learning styles.
  5. World of books; is a second hand book site where books are cheap (often no more then £2.50 and some even lower) and best of all free postage!! I’m sure they will probably one day own my mortgage, but hey cheap books!!
  6. eBay; my second go too for cheap books (and other resources). I honestly don’t know what I would do without my eBay account!
  7. Amazon prime; sometimes that are really beautiful books that I just can’t find second hand; this is where amazon comes into its element! That and board games tend to be cheaper here then eBay for some bizarre reason! Plus with the beauty of next day delivery if we discover we’ve run out of glue, paper, pens (a common occurrence in our household) receiving it the very next day can be a lifesaver!

Useful memberships:

  1. HP instant ink; the best service in the world! We have membership of £7 a month and can print up to 300 pages (there are cheaper options) as soon as you change the ink cartridges they send you more ink so you never have to worry about running low! Plus it saves SO much money on ink it’s unreal!
  2. Library card; being able to check out books for free is always a winner. The children can choose stories or subjects that interest them whilst I make sure we have the topics covered that we need.
  3. Family and friends rail card; we signed up this year and it’s already saved us SO much money on the trains; making day trips out a lot more affordable and accessible. With the card we use I save 1/3 off of all our rail tickets and so far have had positive travel experiences every time (using the wheelchair).

Materials we couldn’t be without:

Now these might seem pretty obvious but after two years of buying different things; some that were great and some which were a complete waste of money, these are what I have found most useful!

  1. Paper. Lots and lots of paper! Also white card, coloured card and black card. When we first started I brought all these work books like the ones they have at school but those quickly went out the window as the kids prefer using paper and putting it in folders instead.
  2. Folders and plastic wallets; I’ve found a folder for each child works best with a plastic folder for each week of learning
  3. Glue; so much glue! Pritt sticks and PVA; I’ve found getting quality glue over pound shop versions makes all the difference.
  4. Staedtler pencils and pens. Again paying that little bit more on decent materials really does make all the difference and makes learning easier!
  5. Sketch books; the kids ones may not be the most beautiful but they love using them especially when we’ve been out to visit art. I’m planning to get myself one in the new year so that we can all do them together as it’s such a peaceful activity!
  6. Blue tac; again something else we seem to go through like there’s no tomorrow. Mostly sticking up their work, art inspiration, displays etc
  7. Poster paint and brushes; I’ve found the best place to get paint is The Works. It’s cheap and good quality so the kids can use as much as they like. My plan for the new year is to get a dedicated art table set up so they can do free art whenever they would like to.
  8. Bullet journals; bullet journaling is my go too when stressed. I use them for mapping out ideas, making lists and plans, and keeping track of what we are doing and when using habit trackers. I tend to get the 8×10 dotted unbranded bullet journals from amazon which are around £5. In the new year I’m hoping to get one for the kids to use for our book of Centuries (Charlotte mason inspired) where we have a double page spread for every 100 year span and every time we learn about someone/something we put it down creating a time line.
  9. Backpacks; for taking everything we need out on trips (pencil cases, sketch books, lunch boxes etc). The start of this school year I brought one for each of us but we’ve ended up just using one main one which goes on the back of my wheelchair.
  10. Lunchboxes and drink bottles; on field trips, days out taking our own food and drink saves SO much money meaning we can afford to do more.
  11. A camera; for recording everything you do. To be fair I use the camera on my phone rather then an actual separate camera. It’s wonderful to be able to look back at the memories and also see the progress the kids are making!

So there are my essentials for home school. I’ve probably missed some out, and would love to hear if you have different essentials that you find helpful 😊


Free Christmas Story & Activities

Hey this is my first blog from the laptop so trying to locate where everything is.

Below should be attached the download of a free christmas story and activity workbook/printables (I have no idea how it works as a complete luddite and its all voodoo to me so bare with me while I get The Man to try and sort it out).

A friend and I began planning a christmas unit for December; and whilst collecting activities for it I realised it would be nice for the kids to have a story which ran alongside (similar to the Passports to Adventure unit we have been using this year by  The Waldock Way.

And so began A Naughty Elf’s Tale. I wrote it primarily for my children (hence the toilet humour) but wanted to share it in case anyone else found it useful 🙂 the story follows different elves as well as Father Christmas and Mrs Claus as they prepare for Christmas Eve; but their plans are hindered by a naughty elf’s antics. I tried to add a moral of forgiveness and second chances as well as teamwork and love but it may just all come out as complete twaddle lol! Anyways at the end of each chapter is an activity which entwines with the story. I tried to do a variety of activities; maths, literacy, art, crafts, design, cooking and science. Please feel free to download and use as suits you; my plan is to start the last week of November and try and do a chapter + activity a day, although knowing me this will all go out the window and end up trying to cram 15 chapters and activities into one day.

It is my first time doing anything like this and I apologise now for the dodgy drawing on page 5 (hard to believe I have an art degree eh) I should note that the images aren’t my own and were sourced off of Google; I had planned for The Man to do sketches for each chapter but for some reason he hasn’t been as enthusiastic as me about it…

I apologise now for any spelling/grammar mistakes; I haven’t had a chance to get anyone to proof read it for me and needed to get it up so that I can get on with other things and not be so hyper focused on it. As I said earlier it’s the first time I have done anything like this so still trying to find my feet; but any feedback would be gratefully appreciated 🙂

A Naughty Elf’s Tale (Chatty Zebra) (compressed)

Love Zo x

My deepest desire, and why it can never be

Last night I dreamt that I discovered my husband had a secret family with 3 other children and the lady was pregnant again. Waking up with tears rolling down my face and what felt like sobs stuck in my throat I couldn’t understand why this dream had affected me so much.

But then the reality hit; I had always, for as long as I could remember, wanted a large family. 4 kids minimum at least. And then reality of the dream really struck; he could go and have more kids with someone else, there’s nothing stopping him having more children. At the end of the day it’s my body, my dodgy genes, my health conditions stopping us for having any more.

Yes I know we have two and are extremely blessed to have them. Not more so because of how many difficulties we had to have them; several early miscarriages, a missed miscarriage which I had to have surgery for, twice weekly hospital monitoring with Doodles because of low foetal movements and for measuring small (even though she was 8lbs when born) and then of course very nearly loosing Titch when I bled for 8 weeks, PROMed at 21 weeks and gave birth at 24 weeks. There were several years when I truly believed I would never be able to carry a healthy baby and would never have my own child. So I know how lucky we are to have the two we have and to enjoy every day with them.


My deepest desire would be to have another child. I would give anything to be pregnant again, have a beautiful baby to hold and feed myself; I’d rather have it then all the money in the world, a lifetime of holidays. There is nothing I would want more. At times it physically hurts to see other mother and babies when out and know that can never be me again.

I don’t know if these overwhelming emotions stem from Titch’s birth and feeling like I was cheated out of that experience with him. I was barely showing when I had him, I didn’t get to celebrate my pregnancy with friends. I didn’t get to see my stomach swell and his movements stretch my belly from side to side. I didn’t get to enjoy his birth or birth announcement. I didn’t get to hold him after birth (or in fact until 6 weeks after he was born) feel him close to my skin. I didn’t get to bring him home to a house filled with cards and balloons because when he was born people didn’t know whether to congratulate us or not especially as his tiny life was hanging in the balance and the odds were stacked against him, then coming home 13 weeks later people felt awkward as he was in fact 3 months old so the horse had bolted from the stables as such. I didn’t get to feed him myself as by the time he was big enough to try feeding my milk had dried up. I didn’t get to change the first nappy, spend the first 93 nights with him laid beside me, be with him for the first full 3 months of his life. Essentially those 3 months of his life he hadn’t been all mine, exclusively for me to hold and love and look after and care for and protect. It was something I struggled for mentally for months after, and something which still brings pain even now when thinking about it. I didn’t get to be a proper mum to him, and by the time I did I was so broken emotionally and physically that I didn’t get to be the mum I wanted to be.

So maybe a lot of wanting another child is selfishly to get to do a do-over. To get to experience everything again that I treasured so much with Doodles but was stolen from me with Titch.

Although realistically with my body another pregnancy would go the same way, if not worse. As I said earlier there are several other reasons as well why I shouldn’t have any more. I know it’s a very emotive subject and can cause strong controversy amongst disabled people especially those with genetic disorders.

Firstly my health went considerably down hill with each pregnancy. My husband’s main reasoning for not having anymore is that I could end up completely bed bound and 100% dependent if my conditions degenerated along the same path. Although with Titch I had a severe infection by the time he was born so I’m not sure if that may have been one of the factors contributing to my sharp decline.

Secondly there is the potential that being pregnant could kill me. Literally. With Titch the surgeons had to preform a inverted T section cesearean as he was so small and became stuck. They had said at the time that if I was ever pregnant again I would have to have another c-section as even one contraction could cause my uterus to rupture due to having to cut along the line of muscle. Given the high probability now of going into early labour again it would be risky. Throw in the fact I have EDS which causes the connective tissue, skin and muscle to be more fragile and it could potentially be a recipe for disaster. There have been times I’ve broken down in tears to my husband that I don’t care if it’s dangerous, the risk is worth it to have another child. But he has had to gently remind me it isn’t just my life that would be forfit; it would effect the lives of the two children we already have.

And that brings me to my third and probably hardest reason to tackle with. Genetically I carry and pass on EDS and neurodevelopmental conditions (autism, spd, adhd). Is it really fair having another child who would have a high probability of being disabled. But then in saying that does that cast doubt on the worth of disabled people? Is it Saying that they don’t deserve to live or be part of society? That their disabilities or differences mean they don’t have a place in our world? I know personally that I am very grateful for my life, despite the struggles and the pain, I am so glad that I am here. But then to knowingly chose to make a child, knowing they may struggle more then most; is that actually morally wrong? Is it at best extremely selfish of me?

Lastly would it be selfish of me to expect my carers to have to take on even more responsibility, even if my health doesn’t decline? As it is I have to have care and support every day. As much as it destroys me to say, the reality is that I am disabled and I am no longer able to be completely independent. The choices I make for my life are no longer my own, and do not just impact me. And of course am I in the position any more to look after a newborn baby. As much as I like to see my life through rose tinted glasses; I do struggle physically, we never know what is round the corner, what is going to go wrong or get worse next. I have pain and fatigue every day; having another baby would only make life a lot harder.

The reality is that I can’t have any more children. As much as I want too, as much as I desire too, I can’t. My own life and health put aside it wouldn’t be fair to those around me to put that pressure and stress on them. The beautiful, wonderful, perfect picture I have in my head is never going to become a reality. I know I have to focus on the future. Focus on what we have and put all my energy, emotions and focus onto that. I know logically and practically that I shouldn’t, can’t have any more.

But it is still heartbreaking every single day.

Ah yes. This is why we don’t eat out at restaurants anymore…

When you’re trying to find something to laugh about so that you don’t cry. Mine currently is that my daughter is adamant she smells of prunes, so adamant in fact I’m pretty sure the whole of Devon now knows she smells of prunes. Prunes probably aren’t even that funny really, but all I can envision is what old people eat to help them poop.

Let me take you back to last night when the start of this post began. Having come on holiday we decided to go out for a meal at the camp restaurant as a treat. I can’t really remember the last time we went to a restaurant (because as much as McDonald’s labels itself so I refused to accept it as one).

The first mistake was to forget the ear defenders and not realise until after we ordered that they had turned up the background music. Team this up with a tiered and very anxious Titch, who for some reason was convinced that as we were by the sea a huge tsunami was about to engulf us at any moment (how does he even know about tsunamis?!); the meal time could be at best labelled noisy.

Basically it consisted of a meal fellow bellowing his heart out that we were all going to die, he was hungry, that they had dared put pepper in the chicken nugget batter thus rending them poison, that night had descended and we would never find our way back to the caravan (the one right by the restaurant where we were sitting), tearing up napkins, climbing all over the seats and us, scrabbling about under the table…well you get the idea.

Then disaster struck; the icecream came out in a bowl rather then the cone he had expected. When the waitress rushed off and returned with an ice cream cone, not just any cone but a teddy bear head cone I was so thankful I near enough prostrated myself at her feet and covered them in kisses.

So that was last night.

We agreed for the rest of the week just to eat in the caravan. But then I remembered the local hungry horse. And after last night being some what of a downer we thought we might replace it with a pleasant culinary experience. After all we knew hungry horse. We knew that there isn’t the loud music, it was a family orientated pub and so more relaxed, there isn’t poisoned peppered chicken nuggets, there isn’t seaside views of impending tsunamis. Ah ha we would be clever; we would take the ear defenders, we could have a nice meal out as a family and enjoy the time together like a ‘normal’ family.

Best laid plans and all that…

And thus began our meal out; despite not being able to see the sea Titch was still adamant about our impending doom. What was worse we were a whole 10 minute drive from the caravan so now without doubt were going to get lost. He wasn’t going to eat anything. He was hungry. He wasn’t going to eat ever again. He hates us. He JUST WANTED TO GO HOME. Shoes were flying. Socks were flying. Salt shakers were flying and it’s safe to say half the tables around us evacuated to the other side of the restaurant.

Then the fun really began.

Whilst attempting to calm a distraught Titch, The Man accidentally knocked his full cup of sprite all over Doodles. Now compared with Doodles,Titch’s meltdowns look like child’s play. We now had full blown screaming that we had to leave, that her skin was burning, that her clothes were wet, that daddy had literally poured burning liquid all over her (despite begging not that long before to drink said sprite), that he had done it deliberately, that she hated the restaurant, how dare we wait to eat our food, how dare we eat our food. Every second until we left was marked either with glaring or screaming at us we were the worst parents ever because we wouldn’t drop everything and go.

It’s hard to convey in words just how stressful this situation is. Not helped by the walk of shame out of the restaurant with everyone who hadn’t already moved away from where we were sitting, turning and glaring at us as we passed by. Of course this was the point the waitress bee lined over to us to check if everything was ok, and was met with an extremely angry and irate Doodles screaming that she smelled of prunes and it was all their fault.

Prunes?! Where did prunes come from?! It was sprite.

Collapsing back into the car with one child crying that we were going to get lost and another that she’s never eating out ever again and that she was going to smell of prunes for all eternity, I found myself welling up and questioning why do we do this to ourselves? Why haven’t we already accepted that as a SEN family these sort of environments just aren’t going to pan out how we imagined?! That the feeling of coming away from a stress fuelled warfare like zone isn’t ever going to be balanced out by doing ‘normal’ family things. That we aren’t ever going to be that family sat in a restaurant with happy smiling calm children who stay sitting calmly on their seats whilst smiling sweetly and remember their manners when the Waitress brings their food.

It’s safe to say we won’t be eating out in restaurants again anytime soon.

Or ever again be buying prune juice disguised as sprite.

Is there a time and a place not for inclusion?

I’m not professing to be any kind of expert or for that matter that strongly opinionated one way or the other. To be honest it’s something I wrestle with on a regular basis; is there a time and a place for inclusion? Are there times we should put others before inclusion?

This may sound a weird and probably highly emotive and debatable topic and I honestly mean no offence to anyone by asking it; more actually seeking answers or reassurance to my own nagging doubts.

Let’s set the scene for an episode sparking this internal debate. Today my brother and dad took myself and the kids to the cinema to see The Incredibles 2. We haven’t been to the cinema for about a year, if not longer, and when have visited previously have gone during ‘movies for juniors’ a reduced ticket fee where there is a mixture of ages and so not the pressure of being as quiet as full ticket films. But as it was a film the kids were desperate to see; already knowing all the characters by name and superhero ability, I hadn’t questioned taking them, especially after several boring weeks for them being stuck at home due to my condition flares.

They excitedly collected their popcorn munch boxes and drinks and scrambled into their seats. And then began Titch’s loud protests of having to wait for the film to begin. To be fair it wasn’t like any of the other movie goers were really distracted from anything other then Facebook scrolling, although I think dad and bro were shocked by quite how loud, insistent and repetitive Titch can get.

The adverts began; let’s just say Titch does not appreciate adverts. Then with a groan I realised that this film had a short film after the film certificate played (alerting Titch that the film was actually coming). So begins the longest 5 minutes of my life trying to hush a protesting Titch that Incredibles is actually coming and we need to watch this short film first.

It’s safe to say both kids loved the film and enjoyed their time watching it. But. And I feel guilty even for seeing the but, but then also feel guilty for trying to ignore the but, if that can make any kind of sense?


Titch was VERY loud. Some of the time was appropriately so; it was a very funny film and many others were also laughing. Although Titch did find more parts comical then the rest of the viewers. Other times he felt the need to lead a running commentary very loudly about what was happening in the film. Or asked repeatedly about parts that troubled or confused him. We tried our best to keep him as quiet as possible, explaining you’re not allowed to talk in cinemas when the film is on. But Titch being Titch I would have had more luck asking a bird not to fly.

And so comes the dilemma; is it fair to subject other movie goers to Titch’s loud outbursts when they have paid £10+ a ticket? Is it exclusive not to make allowances for children with SEN needs at films; I mean it was a kids film? Was it wrong to take them when it could have disrupted others viewing experience, or am I wrong to think of putting others feelings before inclusion for Titch?

A similar thing happened when we visited the Picasso exhibition last month. Having gone with a friend we had a mixed group of children with adhd, autism and sensory processing disorder. We had gone midweek during the daytime; so arguably at what would have been one of the quieter periods. The kids enjoyed it in their own way; yes we were loud, but not destructively so. Just more the kids wanted to talk, laugh about and ask questions about the art. It was their way of processing and enjoying what they saw.

But halfway through a museum guide came over to ask for us to keep the children quiet as others had complained. Now the children weren’t trying to be deliberately naughty, in fact I wouldn’t have even said they were being naughty. They were just loud because they have no awareness of their volume control and no way of regulating it.

This is not something we or they can control. Of course we weren’t letting them run wild, but there are aspects of their conditions that they can not change for love or money. So what does that mean for them with sharing in on experiences? Should we avoid such places so as not to disturb the experience for others who have paid? Is it fair for our children to miss out on these experiences and enjoyment because of behaviours they can not control?

I’ve often wondered this numerous times for myself. When being a wheelchair user impacts on others who have to go out of their way; expending time and energy so as to allow me to take part in able bodied activities, is it fair of me to feel entitled enough to expect that level of inclusion?

For example when trying to board a train which had been delayed and thus swamped by rush hour travellers I was asked to wait for another train which would be less busy.

Did I have as much right to board the first train which I had planned the days activities around as the other able bodied travellers? Or as I would take up more room and require additional effort for staff to help me on and off the train and other travellers to move around to make room for me should I put others first and wait until a quieter period meaning having to rearrange my plans? Would it be right for me to protest for my own rights?

I guess there’s no easy answer, and every scenario has to be taken on its own merit when it comes to deciding what the right thing is to do. It is something I struggle with though; in knowing what is the fair or right choice to make.

On the positive side I do now have one very happy Titch, who even several hours later is regaling us with what Baby Jak Jak did in the film. And maybe that, as his mother and advocate, should be my only focus; making sure he has as many opportunities and positive experiences as possible which he can enjoy in his own way.

But am I being selfish?

Homeschooling Titch

So it’s officially been 1 year of homeschooling Titch. I’m not going to lie, it’s been a rollercoaster of emotions and there have been times when I’ve been pulling my hair out internally screaming “that’s it I can’t do this anymore.” But it has also been an adventure. There have been such intense moments of joy, which we never would have had the opportunity to experience if he had been in school.

This time last year I was terrified! Questioning whether we could do it, if I had the skills to help him be able to learn anything, if I could manage and balance the needs of two very different SEN children, whether I could cope physically and emotionally.


This year he has far exceeded my expectations in ways I never would have dreamed possible. I’ve learnt so much more about who he is, what makes him tick, how he learns best and we’ve grown so much closer as a family.

No it’s not easy. Yes at times I feel I must be crazy. But actually this year has been the best year of my life and I wouldn’t change it for the world.

Titch’s SEN needs are complex. He has sensory processing disorder, severe speech and language disorder and waiting for assessments for adhd and possible other neurodiverse conditions; this affects his ability to learn in ‘normal’ conventional ways. His recent speech and language assessment found that his attention and listening skills are delayed in different areas between that of a 12-36 month year olds levels.

Attention and listening are the foundation of all learning. On paper Titch should have struggled at being able to learn anything. In a mainstream classroom it would have been impossible. The noise, sensory overload and distractions teamed up with how delayed he was with his skills compared to his peer group; I strongly doubt he would have learnt anything. Even if he had he would have still have been so far behind everyone else in the class I dread what impact that would have had over time on his self confidence and self esteem over time.

He would have always been one step behind, in the bottom sets. Growing up thinking he was stupid compared with his peer group. Learning would have become a battle he would have felt he could never win. He probably would have been told off daily for not being able to sit still, shouting out questions, for not focusing, playing the clown. What impact would that have been constantly drilled into him that he’s a naughty child?

With home education he’s had the freedom to develop at his own pace. To focus on the praise for his achievements, rather then feeling inadequate compared to his peers. We’ve had the time and resources to mould his learning around him and how he works best. We can give him 1:1 attention and teaching that just isn’t possible if he was stuck in a class of 30.

I’m not school bashing. School definitely has a time and a place and is hugely beneficial for many children. Every child is different and has different needs. However for Titch a school setting just wouldn’t be suitable. Titch needs to be able to move to learn; he learns very much through hands on practical methods. He needs to have the freedom to progress at his own pace.

He’s been able to learn through experiences; how many other 5 year olds can tell you about ammonites, the life history of Mary Anning, what fossils she discovered and excitedly point out her painting in a museum? All from a trip to fossil hunting on Dorset coastline?

Could tell you about mummification, hieroglyphics and the ancient Egyptians?

Can explain the layers of the rainforest and the reasons why you find different animals, insects and birds at different layers (a concept even his older, academic, sister hadn’t made the connection between!)?

Has been involved on hands on experiments in groups of children of all ages? Has learnt to use a microscope and examine and scientifically classify different materials?

Has had hands on experiences to art and culture I myself have only been exposed to as an adult?

We’ve discovered he has an intense enjoyment and love of the theatre! A child who normally can not stay still, becomes so absorbed in plays he laps up every second of it, his laughter and joy often becoming infectious to others in the audience and also the actors on stage themselves!

We’ve discovered what amazing STEM, engineering and logical skills he has. He can construct and understand the way things work in ways I would never expect a child of 5 to do! He has such a natural curiosity and love of nature and wildlife; can perfectly describe the lifecycle of butterflies and identify all different types of insects.

His capabilities of retaining and recalling knowledge of his interests is mind blowing. For example he can tell you everything about the titanic, what happened to it, why it sunk, who survived and who died and even the class system at the time and what this meant for who ended up in the life boats. All this he has self learnt through YouTube.

Homeschooling isn’t just about education; it’s a whole lifestyle change and choice. Seeing how much both Titch and Doodles have learnt, grown and thrived how could we ever go back?

Fighting to stay afloat

Being chronically disabled is a constant feeling of treading water. Sometimes the symptoms drag you so far under you’re not sure if you can fight against the currents and not be pulled into the dark abyss.

When you break free of the surface for a moment of respite as symptoms ease, relief can never be stronger, but you’re never quite sure how long before you’re pulled under again.

Sometimes the waters smooth enough for you to float. To relax and enjoy the moment. If you’re really lucky you may be lulled into a false sense of security and start paddling, splashing or even swimming just for the joy of it. But using up vital energy reserves you should be saving for when the storms come again,

And when you’re chronically disabled there are always more storms.

It’s hard when fighting against the current to remember the moments of tranquility. Panic sets in and you feel like your future will forever more consist of the drowning sensation, fighting, struggling, fear. Twisting further and further away from the surface, any sense of normality. Any flashes of memories of the tranquility are coloured by guilt at wasting precious energy, self anger at being so stupid.

But when in those moments of tranquility it’s easy to forgot just how scary the symptoms undercurrents can really be. Having fought for so long and so hard; you want to enjoy every second of moments of calmness. Embrace it with both hands and push as far and as hard as you can, while you can, throwing caution to the wind.

Because when you’re chronically disabled the storm clouds are always on the horizon. You just never know when the storm will hit.

#invisible illness #ehlersdanlos #ehlersdanlossyndrome #EDS #Heds #hypermobility #POTs #postualtachycardiasyndrome #fibromyalgia #ME #CFS #chronicfatiguesyndrome #chronicdisability #chronicallydisabled

Waging War on Pigeons

I’m presently in a Mexican standoff with 6 pigeons. They are currently sat on the surrounding roofs and chimney tops, peering down with their beady little eyes and trying to psych us out with a sound I have never heard a pigeon make before.

Put it this way….I’m glad I never watched the horror films Birds….

It began yesterday evening when I caught the said 6 pigeons systematically stripping the leaves off of our mini veggie garden! Who knew that pigeons ate plants?! Not me that’s for sure; I assumed their diet consisted of bugs and worms and seeds and things.

Gone are the cabbage, kale, black kale, sprouts and purple sprouting leaves. All that has been left behind is pathetic little sticks of stems.

Suddenly I was filled with a lot of empathy for Beatrix Potter’s Mr McGregor! Let’s just say it’s lucky for these rats of the sky that we’re in the UK and don’t have access to guns or bullets or flaming arrows or poison darts *ahem*.

Now I’m not going to lie I felt real betrayal from what I had previously considered my bird friends. I hadn’t battered an eyelid when they decimated the gooseberry bush (the writing really should have been on the wall then!) as I had airy fairy hippy ideas of living in harmony with nature.

It probably helped that I had neither planted or nurtured the fruit bushes, nor did I like gooseberries so it was no skin off my nose. But these were MY plants!! We had planted them and nurtured them and made sure they had water every day. Excitedly watching the new plants grow and stretch out, noticing new differences every day.

But now the majority had been cruelly butchered by thieves of the sky. Screw harmonious living!

Having been up all night plotting our revenge, we decided this morning our first plan of action was to build a scarecrow. What a lovely home ed project we could do together, I thought. Alas not so lovely it turns out.

How hard can it be to build a scarecrow?? Very actually.

The first cross of sticks ended up with the middle one falling to the bottom. They wouldn’t stake in the ground and kept falling over. They wouldn’t tie in any position that made sense. The clothes didn’t stay straight and ended up on weird angles.

By this point I was severely heat exhausted and the novelty for the kids had completely disappeared, In the end we staked two poles into the tomato plants and tied the clothes on where possible and hope it did the job. To be fair all love for the plants and care about future decimation had gone out of the window.

So now here we are. Having made our move. Preparing for the retaliation from our feathered foes. I’m pretty sure their plotting together, and they’ve drawn two magpies in with them. I see you magpies up there on the shed roof! *shakes fist*

So we’re sat here with me and the ankle biters on the floor, the birds perched on the roofs above, glaring down.

One question I do wonder is; how many deaths by pigeon were recorded last year…

One of those “what’s going to happen next” days….

So today was literally a series of groaning ‘it could only happen to us’ moments. Not that it was a bad day, in true chatty zebra 🦓 (ooh zebra emoji) family style we completely grabbed it by the horns (the day not a zebra…not that zebras have horns) and finished in glorious style with smiles on our faces and chips in our tummies.

So today we had a home Ed trip booked to a national trust house where a fairy tale workshop was arranged for a large group of home ed kids of D & T ages. To say I was excited about this trip would be an understatement! I have literally been buzzing about it since Christmas. Not only was it about fairy tales (yay!) but covered literacy, art AND history (I mean come on it really doesn’t get better then that!)

Plus as it was 2 hours from home we had decided to stay overnight at a premier inn and then visit The Roald Dahl museum tomorrow (woot mini break!). Now what I hadn’t factored in was what time we had to leave in the morning to avoid being stuck in rush hour motorway traffic; 7am! I mean seriously we do not do early mornings well in this family. Equally we’re not organised enough to pack the night before; cue chucking things in a bag at 6:30am hoping at least one of us would have a complete outfit/PJ set (never have I been so glad for ‘Mount Laundry’ at the end of the bed).

We got on the road and the sun was shining, the roads were clear, the kids weren’t arguing (for once, might have more to do with Titch being asleep then the joys of summer bonding sibling love). It was going to be a good day!

We arrived in time and all in one piece, we even had snacks for the kids who had decided that maybe breakfast would have been a good idea even if it had still been ‘nighttime’ when offered. I thought we were on a roll and semi cockily thinking ‘we’ve finally got this parenting shit together’.

Then I got the suncream out (feeling like I was being good mother for having actually remembered it and hats for like the first time ever). Now I had deliberately brought the spray suncream because 1. It was extra sensitive and 2. It would be easier to put on wiggling protesting ankle biters.

I decided to practise it on myself first just to double check smells and tackiness (again yes this would have been better if I had tried it 2 hours previously) and looked at it for several minutes then sprayed some on my face (because that’s where I burn most) and was relieved to find once rubbed in none had gone in my eyes as we were all good. Doodles decided to do hers herself and Titch wiggled and protested but I hoped that some of the mist cloud must have settled on him.

Now it wasn’t until half an hour later when we were queuing for the bus that the first inklings of what was to come started streaming from my eyes. Within 5 minutes my eyes were stinging so much I went to wash them out in the loos and Doodles said hers were starting to sting as well. All rinsed it felt fine. We got on the bus, all good, reached the stop and tried to get off the bus. Cue me stuck mid ramp with the front foot plates wedged in the floor. 2 helpers later we were off the bus and one of the helpers pointed out that I had left one of the brakes on…my bad.

By this point Doodles was grumpy and complaining the sun was too bright. Several attempts to wash out any residual sun cream seemed to do the trick so we joined the rest of the group in going to the educational room for part 1 of the workshop. Now the path down to the educational room was…slightly inclined to say the least. Cue me nearly catapulting myself out of the chair several times as the footplates kept getting stuck on the floor. Luckily the other HE mums were lovely and helped me down to the bottom but it was safe to say I was slightly blushing by the time we reached the bottom.

Sitting in the educational room I could feel the nagging sting growing once again in my eyes. As the tears started streaming all I could think was ‘jeez I hope the others don’t think I’m crying about the decline we just did’. By this point Doodles eyes were streaming and bright red so we visited the facilities once more in a mutual eye bathing experience. It was at this point I realised Aunt Flo had came to visit (a week bloody early, no pun intended) and any chance of a emergency pad would be in my rucksack left in the educational room.

Unfortuantly where my eyes were now back to normal and fine, Doodles were getting redder and redder and swelling up. We rejoined the group but it was soon obvious that I needed to get her looked at, so scooping up Titch (who’s solution to not knowing the order which the story paintings needed to go in in glue and stick activity was just to stick them all on top of each other in one pile) we headed over to the first aider,

Taking one look at Doodles the first aider asked if I wanted to call an ambulance, this seemed a slight over reaction so we decided to try and wash them out properly with eye drops and ice compresses and give it half an hour.

Half an hour later Doodles eyes were still red and swollen and she was getting scarily drowsy. Luckily as we were staying overnight I had Titch’s antihistamines in the car so scooping and running with her (aka sticking her on my lap and chugging back to the car full throttle in the electric chair) we made it to the car.

Meds administrated we took a five minute breather when I suddenly realised I had forgotten Aunt Flo. Luckily I had my back pack with me but with Doodles too grumpy too move from the front seats to the loo I jumped in the back to put in previously mentioned pad. Now I thought as long as no one stared through the front window then I would be pretty discreet and hidden. It was after several weird looks from passing drivers that it suddenly dawned on my that maybe the back windows weren’t darkened out like The Man’s ones.

Of course they bloody weren’t.

By this point I was looking for the nearest corner to rock in. Luckily Doodles eyes were looking less sore and she was perking up so we headed back to the meeting point to find Mum and Titch. As the swelling had reduced but Doodles was still tiered Mum took her off to the shade to rest whilst I escorted Titch to the next workshop.

Now the main house is accessible but the with the help of ramps and a lift. This would have been wonderful except that my brakes and foot rest had decided to play silly buggers thus seizing up the wheels, cue me being stuck for the second time today on a ramp. This time it took 4 people to try and assist what was going on (thank goodness it was hot and people might have assumed the lobster red face was due to sunburn or something). Right foot rest removed we were at least moving again, bang into the very expensive looking wooden doorway.

I think it’s safe to say depth perception isn’t my greatest gift.

The workshop itself was great; oh how I’ve missed looking at actual real art, unfortuantly day to day exposures to random crayon scribbles entitled ‘nightmares of killer cows’ doesn’t give quite the same ‘feels’! And Titch took to his role as ‘knight cutting down vines’ to a whole new level I’m sure even Hollywood has never seen the likes of before….

Rejoining Doodles and Mum I’m the woodland park it was clear Doodles was feeling back to normal and luckily most of the swelling and redness had cleared. Thus began several hours of chilling in the sun as Titch reinacted lord of the flies with a gang of other boys and sticks whilst Doodles experiemented how many times she could go round the spinny thing without falling over.

And so without (much more) mishaps we made it back to the car and hotel then breezed into the restaurant for dinner. I mean Titch did somehow manage to empty the rock salt shaker all over the table but with the sun shining and good food on the table we were finally through the other end and there are no more opportunities for anything to go wrong, well as long as I can get Titch to stop attempting to climb the curtains and play the floor is lava by jumping bed to bed…

….and yet

Lots of commotion and shrieking is currently breaking the relaxed peace as Doodles has trapped herself in the bathroom as apparently she has no idea how to unlock the door and unnervingly Titch is manically laughing whilst what sounds like every tap in there is running….

*edit* some time later: I’ve just realised I’ve been walking around all day in a vest top having forgot to shave my armpits all week *huge face palm*

Floating on cloud 9


Today I did something which I have worried about for so long and let it prevent me from so much! Today I used public transport whilst in the electric wheelchair!!!

I cannot begin to explain what a psychological hurdle this has been for me, the anxiety around it caused it to feel near impossible! BUT it was actually REALLY easy! It went so smooth we didn’t have any hiccups; well, not proper hiccups like falling through the gap between the train and platform…

One slight *ahem* learning curve was on entering one station Doodles asked to throw a crisps packet in the bin. Now where we were seated we were looking right at said bin, I mean RIGHT at it, so I thought nothing of saying “sure Hun”. The next thing I knew Doodles was running off down the very busy platform to a bin in the far distance. Queue me leaping out of the chair and virtually throwing myself into the doorway while screaming like a banshee for her to get back on the train whilst envisioning the doors shutting and train moving off with Doodles stranded on the other side. Crisis adverted Doodles was safely planted back in her chair whilst I laughed off the fact everyone must have thought “it’s a miracle” as the wheelchair bound woman miraculously stood and moved to the door. Unfortunately the sudden change in blood pressure and heart rate set off the myoclonic jerks, but I guess I could have been then counted as onboard entertainment…

I can’t stress how easy getting on and off the trains and buses were and how lovely and accommodating all the staff were. Easily impressed I shrieked with excitement when the electric ramp appeared like magic out of the side of the bus door making access SO smooth. Honestly anyone wanting to try public transport in a chair but feeling anxious about it; do it! I’m so so glad we did and so lucky to have a great friend too assist us all the way there and back which helped ease the wobbles.

It feels like our boundaries have once again been opened up. I used to LOVE going to London when I was younger and thought nothing of spending the day walking all around it. Now there’s so much we can do and so much I can’t wait to experience in London with the kids!

We went with a home ed group to the WonderLab at the science museum and it was so great. All of it is hands on interactive science experiments and simulations, we were there for an hour and I’m not sure we even covered half of it! It’s brilliant for kids of all ages and adults too.