S is for.. you!

By | June 20, 2021

You are loved, you are many things and so are the initials in your name.

S….You are:

My SOULMATE, quite often we’ll finish each other’s sentences, phone each other at the same time and know exactly what one another is thinking.

You’re also SILLY, not in a bad way but a funny way, humour has got us through the last couple of extremely challenging years and will continue to do so. We can go from a “grrr, I’m really not happy with you right now” to a “I am going to burst with laughter in a minute” and back again, just as fast, but hey, that’s how we roll.

You’re also SWEET, according to D and you are.

The letter T….You are:

TRUE to yourself. You call spade a spade, as the saying goes. If you like something you say so and if you don’t, you also do. I could include Stubborn above too, but this could mean an eyeroll and a “pot, kettle, black” moment …it has, hasn’t it!!

You’re also TENACIOUS, similar to above. Persistent in both home and work matters, it’s a positive.

There’s another T at the end of your name, so let’s head to U,

The letter U, You are:

UNDERSTANDING. Flipping heck, everything we’ve gone through around my feet (and there’s loads I haven’t put online). You’ve been there with a cuddle when it’s all got a bit much and again, humour has definitely helped.

UNCONDITIONAL is also another word to describe you, unconditional in your love for me and our children, unconditional in your love for your late parents.

UNCOMPLICATED, a bit like True, a spade is a spade to you.

The letter A, You are:

ADVENTUROUS, you had your around-the-world travels before you met me and, as if by fate, you were ready for the whirlwind that was us getting together. That was an adventure in itself.

APPRECIATIVE, you appreciate the challenges that our young adults face and the challenges that my feet (and now hips) have left me with.

You aren’t afraid to be ASSERTIVE, when need be, whether in a work or home situation, rather than replay a potential situation over and over, you go for it.

Now onto the letter R, You are:

ROMANTIC, remembering birthdays, anniversaries and other relevant dates. You know the flowers I love (pink lilies) and ones I really, really don’t like. Do you remember the year we both bought the same Valentine card for each other, much to our amusement and that was before Covid restrictions when there was many more cards to choose from… soulmates!

You are also RESPONSIVE, not always when football is on but otherwise.

And REGULAR, yes I do mean what you think it means but also, RELIABLE, there for us when needed.

And back to the letter T again, You are:

TOLERANT, that’s a must in any family, but something that’s been much-needed in recent times.

And to end on a mushy note, you are TENDER, you are TASTEFUL (you married me, after all) and we are TOGETHER.

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Crafting helps – Day 87

By | March 28, 2021

The one disadvantage to D having her weekly flute lesson on a Saturday is that her weekend is shorter and, when her anxieties start about the return to school on a Monday, it gets even shorter.

Poor D, when she gets anxious over school, there’s nothing I can sure to re-assure her, skipping up and down our garden path helps, she skips continually back and forth, her face emotionless and eyes fixed forward.

Hubbie and I were thinking over lockdown…D started at her SN school just before her 6th birthday, she’ll be 17 this year. That’s a long time, a lifetime even, for her to get used to her school, the staff and the routines. But still she gets anxious.

As well as skipping and being in the garden, drawing helps, the challenge of deciding what to draw and it’s placement on the page, diverts her mind. Much like crochet does for me.

I asked her draw a robin for me, knowing that as it’s her favourite garden bird, the task would be calming.

Here’s the result, it’s lovely and so detailed and it’s helped her. Tomorrow is another day.

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One Year On – 26/3/2021

By | March 26, 2021

26th March…I’ve been dreading this day, this anniversary of a year since I last saw my father-in-law, the day he was moved forcibly into a care home.

He’d been in hospital for a month and, as it became more and more apparent that he couldn’t go home and also that the first coronavirus wave was imminent, the hospital made the decision that anyone who could be classed as “medically fit” to he discharged would be and those who couldn’t go home, would be heading for a care home. One that had vacancies, one in which we had no say, so great was the need for beds to be released.

We don’t blame the hospital, no one could have predicted how severe the first (and subsequent) wave (s) were, how many people would die, how within communities heroes would emerge, how grateful we’d feel for key workers and nhs staff who gave their all and more.

And so, back to 26th March 2020, we knew he’d be arriving at the home around lunchtime so, we made an “essential journey” as we’d entered lockdown a couple of days before, we headed to FILs house to pack up a few bits and pieces from a lifetime of memories, what to choose as dementia was also setting in for him?

A wedding canvas that we hoped he’d recognise, a much loved present in April 2019, we hoped he’d still be able to gain pleasure from it. Similarly, pictures of T and D, wordsearch books and pens (gosh, my FIL loved his pens, kept them next to his puzzle books, lids on, just so), his bedroom tv, a radio, a couple of plants and changes of clothes. Not knowing how long he’d be in there, we packed enough for a few weeks.

We arrived at the care home and Hubbie instantly recognised it as being on the site where the wedding reception for his parents had been held (not because he’d been there but because he’d been told the location), we hoped it was a good omen.

Waiting to take up his belongings, we were told that only one person could go up and see my FIL and do the handover of belongings, I went up, something that has stayed with me, my last images of my FIL, recognising me and holding my hand, listening as I told him that we hoped he’d understood that, at the moment, he couldn’t go home, he needed to be in the home to get a bit stronger and we would see him soon. I then got called away to do an inventory of his belongings and I said I wouldn’t be long, that was the last time I saw him, his eyes showing the cataracts were returning, his pupils reflecting the sunlight as they were a blue/grey colour.

I started the inventory with a care worker, she marking belongings with a sharpie, us talking behind masks and wearing gloves as she commented on what we’d brought in and admiring the wedding canvas, that of my Inlaw’s wedding day.

We didn’t get too far into the task when another woman came in, no introductions, no pleasantries but a loud “you need to go, now!” I wasn’t able to say goodbye to either my FIL or finish the inventory, made to feel like a child who’d done something very wrong as I was escorted downstairs.

And that was that, we were emotional leaving, wondering when we’d see him again, phonecalls with him weren’t an option as he was profoundly deaf, Skype etc wasn’t possible due to the dementia – which allowed my FIL one lucid hour or so a day – and his deafness.

The next few weeks were a blur, home-schooling started and trying to find out how my FIL was, it wasn’t easy.

We found out that he’d been moved within the home a few days after admission as “he wasn’t a permanent resident”, not actually helpful for settling him in, then moved again. This time being told that he was now permanent. Three moves within two weeks can’t have helped him to settle into a very unfamiliar place.

It was impossible to get a clear picture of how he was, we were told by two different people within a week that coronavirus was “everywhere” and then that it wasn’t.

Shockingly we found out that even though he wasn’t classed as “permanent” at the time, the care home changed his doctors and also, without any consultation with Hubbie, asked the doctor to put him on medication that prevented any “inappropriate behaviour” and – according to side effects – made him drowsy and no doubt, docile. We knew from seeing my FIL in hospital and at home previously that there was that one lucid hour, the rest of the time he slept, his body needing that sleep as his inner time clock got ever slower. The care home justified their actions by saying that he was spending all day and night walking around, making a nuisance of himself, staring at people…well, he’d needed a walking frame at home and in hospital, struggled to stand and his body simply did not having the energy to do that and his cataracts meant he might stare when first woken as his eyes tried to focus.

A “power of attorney” seemed to make no difference to the care home, we were told nothing, I’d try and phone every other day, calls would be put through and either just ring or be put down.

We emailed the care home and their head office with our concerns, this resulted in a “why did you do that?” call from the same woman who’d been so aggressive on the first day. We were promised a weekly update, nothing came. We asked if we could see him through a window, desperate to know how he was, the answer was “no”, we asked social services if they could help, they sympathised and tried to get updates too, the phones were put down on them too.

Whilst we were very aware of the challenges facing care homes and the extreme circumstances, it doesn’t change the need for some compassion, we were under circumstances where we had no contact with someone who’d been used to me going into hospital nearly every day to see him, who’d had frequent visits from us when at home, who’s profound deafness and increasing dementia meant that he couldn’t contact us directly and nor could we him.

We barely slept, waking up every morning with my FIL in our minds, wondering how he was.

The situation wasn’t right. We asked social services if he could be moved to a nursing home, or go home once care was in place…anywhere where we’d have contact or better communication, the answer was “no” as lockdown was in place.

We looked up previous CQC reports on the care home, they weren’t positive, raising concerns that possessions were going missing, that dementia patients weren’t being adequately cared for, that communication wasn’t good.

And then on our wedding anniversary, nine weeks after my FIL entered the care home, he died.

There had been a fall the previous evening, we found out later and they’d checked him over and put him back into his bedside chair. Sometime during the early hours, a decision was made to put him back to bed (he was never comfortable in bed, the pains in his legs meant he preferred to sleep in a chair) and someone we don’t know who, observed him taking a last breath, following which a doctor was called.

That’s all we knew. No idea of timing, in fact the time of death told to the coroner was stated as being after the phone call to his family! It was noted on the coroners report that there was a timing discrepancy and that he was being treated as a Covid case as the care homes had no means of testing in place.

When we went to collect his belongings a few days later, there were items missing:

The remote control for his tv, a dementia clock, his top false teeth (goodness knows were they were), his favourite cushion and two blankets I’d crocheted for him that alternated on his bed at home.

We were offered no condolences and when we queried the time of death, were told that the records had already been archived….. something which didn’t sit right.

The post mortem revealed the cause of death and that he’d passed away most likely asleep, also he’d lost nearly a stone in weight from having been weighed before he was discharged from the hospital.

From then on, we had a funeral to arrange within strict Covid guidelines, it was live streamed out to those who’d maybe wanted to come but couldn’t as shielding and T and D each wrote messages for their grandad on wreaths I crocheted.

At times, as we’d had no contact with my FIL and the care home were no uncommunicative, I’d wonder if maybe he was still alive, that someone else had passed away and we’d been told incorrectly. Strange the way thoughts can turn in the wee small hours.

I blame myself for not acting after I was ordered out of the ward on his first day, I followed that “care” worker back to reception feeling that things weren’t right, that I shouldn’t have been spoken to like that, that if she spoke like that to residents relations, how would she be speaking to residents?

Talking to people in the last few months, unfortunately we’re not the only families to have gone through these experiences with the same home. It’s no comfort but I suppose at least my FIL wasn’t singled out for this treatment, it’s wrong. End of life and elderly care should be exactly that…care.

One year on, I hope somewhere my FIL is reunited with my MIL, that somehow he knows we tried to do our best by him, that we miss him and that we’ll be reporting that home where “care” might appear in its description but it didn’t really seem to.

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Autism With Lola – A Special Offer

By | October 9, 2019

When D was diagnosed with autism at age 4.5, I had an immense need to find out as much as I could about autism, I still do, I don’t think I will ever stop learning.

It felt quite a lonely time, I hadn’t joined social media and really really wanted to find other parents/carers to speak to them as I instinctively felt that their experiences would help me and D by being around people who “got” the challenges and share the highlights that our children bring.

A few years (and grey hairs!) later, I joined Twitter and was delighted to discover that, by using hashtags, I could search for parents/carers/autistic individuals and connect with them. Through their blogs and posts I could read that, no matter where they were located in the world, they were there for advice, for chats or a virtual fist bump. I find a “tribe”, if you like.

One member of the “tribe” has taken her need to generate autism awareness and acceptance a much-needed step further is Jodie, the author of Autism with Lola, Playing With Bourbon Badger and she very kindly sent me her book, activity book and Lola bunny for me to share with D and review.

My first impressions of the story book and activity book are that they are very calming, both in the colours used for the cover, the story and the lovely illustrations.

The story is a very familiar one, Lola (the bunny) is enjoying painting, so much so that she is completely overwhelmed by the noise that a tidy-up instruction before playtime brings.

At playtime, Lola is alone and unhappy, she is scared and worried until Bourbon Badger comes to the rescue.

Lola’s autism is described in the book in a way that children will understand and hopefully empathise with.

The back pages of the book has advice from an occupational therapist and speech pathologist with questions that could be asked in a classroom situation to further understanding, as well as discussion topics and strategies.

The activity book is designed to help children understand what it feels like to be autistic, with varying activities from word searches, emotions, drawing activities and colouring.

I can see that D would enjoy the activity book too, making her realise that the sensory overload and emotions she feels at times are felt by Lola too.

Lola Bunny herself is gorgeous! A soft plush toy with any labels firmly hidden away. Her large ears are so soft to the touch and can you spot what she has in her paw? Her ear defenders! I also love Lola’s cute little smile.

There is currently a special offer on the bundle of story book, activity book and Lola bunny, the offer can be found here.

Disclosure: we were sent the story book, activity book and toy for the purpose of this review, my words and views are my own.

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An Overview of Phonological Errors

By | August 28, 2019

D and T are now 15 and nearly 17 years old respectively, one of the aspects that made me wonder “could it be autism” was their speech – or lack of it – in their early years. Both had stilted speech, used echolalia and were not able to express themselves verbally when overwhelmed. This is sometimes still an issue when stressed.

I have been asked to share this infographic and I’ve found it very interesting.

Speech delays and disorders are more common in children with autism and with autism spectrum disorders.

Yet phonological errors and phonetic errors are common in children with other conditions.

Compounding the issue, all children make mistakes when learning how to speak.

The challenge for parents is determining what is normal and what should be a matter of concern.

This infographic on phonological errors by WPS Publish lists the most common phonological errors, the names for each, and an overview of what causes them. It also tells parents when these issues should disappear in normal children and when they suggest a severe speech problem.

If your child is making these mistakes and has hit the age where it should have faded away, take your child in for an assessment.

Speech therapy and counseling should be done as soon as possible to prevent speech problems from interfering in your child’s development and education.

Types of Phonological Processes

Disclosure: this is a collaborative post.

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I’m proud to be the Mumma to an Autistic Daughter #autism #autisticpride

By | June 17, 2019

When you think of Autism, what comes into your mind first?

Rainman as portrayed by Dustin Hoffman or a child flapping their hands around, struggling to communicate?

Both have autism, both are individual.

Because that’s what autism is, an umbrella name under a broad spectrum. Some individuals are “high functioning”, with an amazing ability to remember facts and statistics, others have what would be described as “classic” autism with the three autistic traits (OCD, stilted speech and a lack of awareness of social skills) and then there is the severe end of the spectrum with the little or no speech, physical difficulties and an vastly decreased emotional age versus actual age.

All are autistic and autistic children will grow up to become autistic adults.

There is no cure for autism, but (with the most appropriate support for that individual) coping mechanisms can be learnt.

I’d like to focus on two examples, the first being a five year old girl, diagnosed at 4 years old, after it became very apparent in a mainstream nursery setting that she was showing the classic signs of autism (the 3 traits as mentioned above), this little girl couldn’t hold a conversation, couldn’t join in with “play”, couldn’t tolerate a classroom full of children due to sensory overload but could count to 50 at age 3, way above the anticipated nursery entry level.

The little girl was too overwhelmed by the environment to read or write but would point out numbers everywhere, on doors, on buses, on supermarket shelves.

The little girl was picked to perform in the Christmas Nativity play and joined in with rehearsals, but on the day of the performance, because of the unfamiliar environment of the school hall and the sight and sounds of the audience, physically and emotionally could not be a part of the play.

The little girl’s school day wasn’t in the classroom but in the corridor outside, a desk with a “safe place” under it, a 1:1 TA was appointed but the little girl was too “scared” and overwhelmed to join in.

The little girl who’s memory for numbers was way ahead of her peers, was placed on the lowest level table when she could join in class because there was nowhere else she could go.

Breaktimes and lunchtimes were spent clutched onto a TA’s hand as the fast pace of the playground was too overwhelming, the reassuring hand grasp meant security for the little girl.

Always accompanying the little girl were a number of small bags, each containing items of comfort which could be taken out when needed, acorns, leaves, playmobil figures, laminated sheets etc, all very important to the little girl, of little interest to others.

Despite the dedicated presence of the 1:1 TA, the little girl wasn’t progressing but it seemed that her needs were not sufficient to warrant an SEN or ECHP being granted.

For the little girl, any sensory overload resulted in an emotional or physical outburst, or a meltdown, sometimes over as quickly as it began, sometimes longer-lasting, which if it were hours, could be emotionally and physically draining.

You might be thinking why have I used an example of a girl, do girls have autism?

The answer is “yes”, girls do have autism but seem to be more able – apart from my example above – to mask their traits, meaning that by the time additional support might be needed (for example, in the transition to secondary school), it is harder to source, as a pathway to a diagnosis (or “label”) may not have been considered.

The “label” of an autism diagnosis can be off-putting for individuals, parents or carers, the fear that a “label” will mean than the individual will be treated differently, when in reality, it is a “tool” to accelerate putting support in place and it must be remembered that the autistic individual post-diagnosis is no different to how they were the week before/the day before or even the hour before – they are the same person, but they now have a “label”.

The autism “label” also opens up alternatives if the current educational setting is not proving successful, which is where my next example comes in.

In a special needs school, there is a girl of 15, to instantly look at her, you wouldn’t think she was autistic, she answers when spoken to, is able to make her way independently around school and participates fully in lessons, including extra curricular activities such as after school clubs, music lessons and other opportunities.

Looking beyond the surface and you’ll find that the girl answers when spoken to as she knows it is expected of her, makes her way independently around school as it is a familiar environment and joins in activities as she has received detailed gentle and frequent instruction as to what would be happening.

The teenage girl will leave the “cushion” of school in a few years and the transition to college/a further setting has already started with the focus on life skills, on managing money and more trips into the community.

Meltdowns are something the two girls have in common, in the second example, there is a vast degree of “masking” happening, which is when any emotion builds up throughout the school day (similar to a coke bottle being shaken with the lid on) and then it is released when either they see their “constant” in life, their parent or carer or once they are at home, in their “safe place”.

Autistic adults have meltdowns too, a meltdown in an autistic adult can have more physical impact as obviously they are far stronger and of bigger build than a small child.

Autism isn’t something that can be grown out of.

The other thing the two girls have in common is that they are the same girl, my daughter. We received her SEN at the second attempt and it being granted meant that she could go into SN school once a place was available.

She entered SN school at the age of 6, unable to read or write and, with the lower class numbers/higher staff ratio has absolutely flourished!

She reads avidly, writes beautifully and has been described by her head teacher as a “role model”.

She is learning to play the flute and is a pilot group of children at her school undertaking a Duke of Edinburgh’s Bronze award, she is also half way through an Art GCSE.

The lesson we have learnt from parenting our daughter and her high-functioning autistic brother is that we “don’t sweat the small stuff”, we focus on what is important and we treasure every achievement for what it is, an achievement made in their own way and at their own pace, recognising the individuals that they both are.

I prefer not to use a puzzle piece when I write about my children, but more a tree, with ever-growing leaves as they progress through life

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Anxiety, PTSD and Me

By | May 3, 2019

Anxiety sucks.

A little bit of day-to-day anxiety is natural, the “oh sh*t, I’m going to be late…” or something similar, but what if that anxiety stays with you all day, burbling away like a saucepan full of water, threatening to over-boil?

What if anxieties prevent you from doing activities that you’d previously enjoyed, what if you deliberately avoid situations because you’re worried about what might happen, even though it won’t.

An example of this is, we have to cross a bridge over an “A” road to get to the nearest train station, at my worst I would be going over it thinking “what if it collapses, where would I fall? I’m not crossing if there’s a car underneath, I’ll get run over, if the fall doesn’t kill me”.

My anxieties have definitely increased since my three foot operations, I’m slower walking around, as a non-driver and I worry about people behind me, worry that they’ll assault me, as per what happened a few years ago.

I worry about what all these foot operations have put my family through, I worry about the next general anaesthetic, figuring that as I’ve got through 3, one more is likely to go wrong.

I “bit the bullet” on Tuesday and talked to someone at Talking Therapies about past events and how I’m feeling now, she graded my anxiety level as “moderate”, said I had PTSD and I have to decide on future therapy.

I feel guilty about saying “PTSD”, it’s associated with people who’ve experienced far, far worse than me and I don’t want to detract from what they’ve gone through.

I was also due a medication review this week and, as well as continuing on the amitriptyline for anxiety and sleep, I’ve been prescribed Pregabalin for the horrendous nerve pain I’ve been left with and anxiety.

Yesterday, on day 122/365 I was grateful that I’d bought a pre-payment prescription certificate as this little lot would have cost me £27!

I didn’t post this yesterday, I was worried about opening up, part of me was also anxious about any drug interaction and when I should take the two tablets. Ironically Instagram doesn’t seem to want to publish this post, hence the blog!

I was warned I’d feel drowsy today with the Pregabalin, I do, I’ve felt as if I’m in a bubble, my short-term memory has been making me both frustrated and laugh today, that feeling when go to do something and have no idea what? That’s been me, all day.

But, once they’re in my system, I’m sure they’ll help.

There is a hashtag #itsokaynottobeokay and that is what I’m striving for at the moment.

Thanks for reading x

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Ticking the box in my autistic daughter’s school (just for the sake of it!!)

By | April 24, 2019

I had hoped, with D being in an SN school, that the box-ticking wouldn’t be so prevalent, that “need” to “tick” just for the sake of it, irrespective of the angst it may cause.

(the image above is me going a bit “Daily Fail”, because we all know what a tick looks like!)

I know I haven’t blogged for ages, it feels like there’s so much going on that I need a map to navigate through all the thoughts in my head, but this that follows, I just had to…

So, every term, we have an IEP meeting at D’s school, under the umbrella of Parents Evening and progress is checked against tasks set, sometimes they are emotion-related, sometimes they are academia-related but they are all very individual to D. Progress is discussed and they are either signed off (tick!) or carried over.

We had a prime example of box-ticking this morning and one that had NOT been discussed or agreed.

Some background:

D is undertaking a Duke of Edinburgh’s Bronze award as well as an Art GCSE this school year.

Both are amazing achievements for her and both are causing her stress. The DofE award has involved her participating in Volunteering activities (our weekly Park Run duties), Skills (Band practice) and Physical (PE sessions), the latter two are being undertaken at school to primarily ease D’s anxieties and to help me after the Sepsis episode.

The DofE also involves two expeditions, one practice and then the real thing, camping, map reading, cooking etc.

There have been times that D has said to me “I wish I’d never signed up for this”, meaning the DofE and this is a classic case of D saying what she anticipates the teacher/authority figure will want to hear, ie Yes.

So, we have been plodding along, trying to manage the anxieties and reminding D’s teachers that she has signed up for two major extra tasks this year and that, as she is already stressed, everyone needs to help manage the pressure on her.

When I spoke to D’s head teacher about the plaster incident, she mentioned to me that D was one of the pupils the leadership team recognised was under pressure.

All sounds good so far, so why am I blogging?

Well, every Wednesday, D has PE as the last lesson of the morning, she then has to get changed quickly, eat her lunch in a car and travel with a TA to the SN school a good few miles away where she has an afternoon focussed on GCSE Art.

D’s school have stated before that it is optional if the pupils shower after PE, in view of the fact that D is pressed for time, I had asked that she not be pressurised into this because she would be anxious she’d miss her lift.

That was agreed and a note in the home-school diary said that they’d “never force her to have a shower”. All fine you’d think…

(And in case you’re now thinking “sweaty, stinky child”, I pack wipes and deodorant in her PE bag.)

So, why on earth was D told that her teacher was expecting her to have a shower after the lessons so that she “could tick it off”?’!?

Something that wasn’t agreed with us.

Something isn’t possible within the timeframe.

Something that is stressing our D out and will continue to do so every flipping Wednesday!!

I don’t normally swear but FFS, give the anxious, stressed child a break.

Roll on Parents Evening!!!

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Getting back into it – #WellbeingWednesday

By | February 6, 2019

I haven’t written one of these for a while, have I?

Truth be known, events of last year took their toll on me emotionally (if you don’t know, sepsis in November and the prospect of another foot op this year) and my confidence has nose-dived, I’m not an over-sharer anyway, I’d rather stay silent, feeling that I don’t have any input.

Which is silly, really, because I hoped by starting blogging I might reach out to other parents in a similar situation, juggling continuously and hoping a proverbial ball doesn’t drop!

So, what’s been going on?

Well, our lovely D is suffering a “bit” with anxiety, more anxieties than usual and a far chunk of is connected with my sepsis episode.

For instance, last week, Hubbie was off work as it was too cold to do the planned outside work, the downside of that is, being self-employed, he doesn’t get paid for time off but positively it meant that he could walk D to and from school, saving my feet the journeys as I’m still very much affected by nerve pain (in both the foot that needs another operation and the foot that had sepsis, typical me, it couldn’t be the one foot, could it?!?)

But I could see D’s mind whirring “Why isn’t mum taking me? What’s wrong? Why isn’t she dressed? Will she still be here when I get home? What if she isn’t? What if she’s in hospital again?”

All very valid concerns but unlikely, you get the idea? Sometimes she vocalises these concerns, sometimes they take the form of stomping, finger twisting, scratching, silence, all outlets for her.

I do reassure her but I am aware that if I need to say “owwwwwww, silly feet!” I need to say it out of her earshot, not adding to her worries.

She’s also busy at school, she is 14 but school are planning for beyond school, more life skills trips, trying out new foods every week (some more successfully than others) and lessons on budgeting to furnish a room, all very useful but D takes it to mean that she HAS to leave home when she’s an adult, not that it’s a choice … which leads to more anxieties.

T is busy too, preparing for not only GCSEs this year but also another round of pre exams next month.

He is very good at masking emotions during the school day, taking them out of a FIFA game at night and more recently a bit of plastered wall and some tiles, which is concerning and hopefully his stresses will ease after the exams (and pre exams).

He’s still very involved in this football, this has always been his outlet but it doesn’t seem fair that his mainstream secondary school is inflicting these further pre exams on the students when they are pressuring and focusing on anticipated grades.

And me (haha!).. If you follow me on Instagram, you’ll have noticed that I’ve been posting a picture daily with a gratitude message (the link to my instagram account is here), this is something that has really helped me focus on positivity, which is turn helps my wellbeing. Pictures can vary from the robin that we always see on the way to school, to things that have caught my eye, to the occasional bit of crochet but it’s something that I enjoy doing and I hope those who follow me enjoy seeing the pictures.

I need to say thank you too, I’ve been nominated in the BAPs awards in the Wellbeing category and also the Making A Difference categories, both were unexpected but I am very grateful and I don’t expect to go through to the next stage but (told you, zero confidence atm!) but thank you so much to whoever included me XX

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I’m an introvert and so is our autistic daughter, that’s okay by me!

By | January 26, 2019

There are many types of people in this world, some have “labels”, others don’t but what we all have in common is that we have our own ways of coping/dealing with situations.

I’ve said it before, I’m not a “coooooeeee, look at me!” person, to be honest, I’d find it exhausting! The pressure of always being the focus of attention, of performing… no thanks, I’d rather be on the outside looking in, contributing when appropriate and when/if there’s a gap in conversation.

So, it’s no surprise that D is also an introvert.

This was her today, after two days absent from school, she agreed to head to the shops.

She will sit in a coffee shop with me and read her book whilst having a snack. It’s her way of coping with the environment, the contents of her book distracting her from the sounds and smells associated with the environment. There isn’t masses of conversation, she will answer politely questions but I am aware of how much she is attempting to tolerate and fit in with the environment and I don’t want to pressurise her.

It does make me smile that she’ll pack five or so paperbacks into a bag when we go out but I wouldn’t dream of restricting them, it’s far less than the two or three totes she would carry when in mainstream school, cramming them with playmobil, leaves, acorns, petals, laminated pictures and the occasional soft toy, all items that she relied on when sensory issues were looming.

Our girl will stand up in front of a packed school hall and sing, after masses and masses of practice and gentle encouragement but ask her to do something unexpected and out of routine, such as taking an item to somebody who would then attempt conversation or replying to someone who is talking and maybe using “banter” or sarcasm and she struggles, big time.

The latter happened last week during her volunteering, she headed to the nearest tree and hid, because she didn’t know how to answer and got overwhelmed.

That was an extreme example and D’s autism means that she finds it hard to “read” social situations and body language, I could see from her body language that she froze before heading for the relative safety of that tree.

On the whole, school are mindful of D’s personality but at every Parents Evening there is a task that she should join in conversations outside the classroom environment more, that when they’re out, D should start a conversation unprompted and that during “choosing time”, she shouldn’t choose a book! Which makes me reply that “choosing time should be just that! An activity of her choice!”

D has recently been given a diary by school to write down any worries and – finally – been given a daily timetable for her to refer to, all of which helps her deal with her day. In addition, she has started weekly sessions with an autism specialist at school, all aiming to get her to not bottle things up. She is extremely good at masking emotions until we’re on our way home from school and then the painful twisting and squeezing of my hands and arms will start as she lets it out. It’s something I’m used to and I’d rather she uses me as opposed to lashing out at anyone else.

I’ll know she’s got it out of her system when she starts skipping as we carry on our walk home, something which is always a relief to see.

Bearing in mind the above, I was really surprised when D told me that she’d been told (she called it “moaned at but I’ll say “encouraged”) to stop skipping and go over to the other side of the playground and talk to people during break time. Break time to D is exactly that, a break from lessons, a time to wind down (maybe skip, maybe read) and prepare herself for the rest of the day. Not be “moaned at” to join in, surely?

We have seen a major increase in D’s anxieties over the last couple of months, a combination of puberty, my sepsis episode and the pressures of school as they make increasing changes to prepare her for life beyond school, in her introverted way she’s coping…just.

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