‘The Witches’ (PG) is a new comic supernatural fantasy film, based on the Roald Dahl novel, in which a young boy encounters a coven of witches.

It has stirred up enormous controversy among the disabled community for its portrayal of witches with physical differences/disabilities.

We journey through the film through the eyes of various characters, including the unnamed ‘Hero Boy’ (as boy and mouse), Grandma (as a girl and an older woman), Daisy/Mary (a girl turned into a mouse by the witches), Bruno (as boy and mouse after he too is transformed), the Grand High Witch, and a host of other characters.

There are a huge range of themes covered, or alluded to, in this film.

The pain, loss and loneliness of becoming an orphan, hard lessons about fairness, and the finding of a friend.

The battle between ‘good’ and ‘evil’ flows through the film, with blurred edges as ‘good’ and ‘alternative’ collide.

Other themes that have been picked up from the book and the film include suggestions of societies view of women, misogyny and sexism, as well as the films portrayal of the physical differences of the witches and the impact of this on disabled people.

The portrayal of the physical characteristics of the witches has been controversial, with many disabled people and organisations representing them criticising the film for “once again” portraying physical difference as evil.

The Paralympic Games movement has, among others, been openly critical of the film, Tweeting that “Limb difference is not scary. Differences should be celebrated and disability has to be normalised.”

While the Lucky Fin Project*, a non-profit project aimed at raising awareness and support, and celebrating those born with symbrachydactyly or limb difference, Tweeted “The community upset over this “kid friendly” film has been overwhelming. The deliberate choice to make Anne Hathaway’s character in the new @wbpictures film #TheWitches limb different in efforts to make her more creepy and sinister is upsetting. #LimbDifferenceAwareness”

Actress and TV presenter Grace Mandeville, who was born with a foreshortened right arm, said she was “…really disappointed with the decision to give the villains in the movie a disability for absolutely no reason other than to make the character seem scarier”. “The truth is children will watch this movie and some will then be scared of people that have limb impairments or ectrodactyly [a split hand] thanks to this film.” “I thought we were moving forward in this industry, but once again a movie has used scars and a disability to create a scary character.”

Grace added: “I’m aware that this is just a movie to some people, but this affects the perception of disabled people more than you’ll realise. I dread to think how a class of children would react to a new classmate who has a scar or a limb impairment after they’ve all watched this film.”

UK Paralympic swimmer and Para-triathlete Claire Cashmore was among others who warned that the film could have a negative effect.

Claire, who was born without a left forearm, said images of Hathaway’s character had left her “very confused/upset”, and suggested Warner Bros should have sought feedback before making the film. “We want disabilities to be normalised and be represented in a positive light rather than [be] associated with being a scary, evil witch,”

Under pressure from a deluge of criticism, Warner Bros. have issued a statement of apology.

A spokesperson for Warner Bros. said the studio was “deeply saddened to learn that our depiction of the fictional characters in ‘The Witches’ could upset people with disabilities.’” “In adapting the original story, we worked with designers and artists to come up with a new interpretation of the cat-like claws that are described in the book,” the statement reads. “It was never the intention for viewers to feel that the fantastical, non-human creatures were meant to represent them. This film is about the power of kindness and friendship. It is our hope that families and children can enjoy the film and embrace this empowering, love-filled theme.”

It is hoped that movie studios will learn from the fall-out of this controversy and will attempt to consult better and make wiser decisions regarding future films.

Nobody is holding their breath on that one though…

If you had told me a year ago that all of my son’s therapies would be done virtually, I probably would have felt some relief. I was surprised to discover, though, that teletherapy can be much more draining that in-person sessions were.

With at least five therapies a week, our family quickly realized that something had to give before the burnout got in the way.

The Power of the Cotreat

In the past, I assumed that therapists would rather not co-treat with one another, since a one-on-one session is probably more effective.

If we’re exhausted, though, even a one-on-one session doesn’t give as much benefit.

So, I created a monthly schedule of our availability and asked our therapy team to co-treat with one another whenever they could.

It was an adjustment at first, but the benefits, for us, have outweighed the flaws.

Our therapists get to see what the other specialties work on and can bounce ideas off of each other.

Plus, we reduce the amount of time we spend in front of the computer screen while still getting the benefits of a variety of different therapies.

Planning Ahead

One of the hardest adjustments with our switch to teletherapy was just having materials.

Our therapists would often ask us if we had a certain toy nearby, and the state of my increasingly messy pandemic house was not the best for finding specific toys quickly.

So, I started sending an email to the therapy team on Sunday evenings to see if we could come up with a couple of activities ahead of time.

This way, I could gather the necessary materials without wasting time in the session trying to find things or having to change the plan because I couldn’t dig something up.

Find a Common Thread

As we’ve all gotten used to doing a little more communication as far as planning ahead for teletherapy sessions, I recently started a new idea of having a theme for the week and passing it along to the therapists in my Sunday email.

They don’t have to use the theme if they don’t want to, but it can provide a nice common element for my family as we practice things and do activities–or even just talk with each other–throughout the week.

My son is young and working on developing foundational language, so our themes are centered around core words like go, see, like, etc., but themes can also be centered around the time of year, favorite objects, and even people or places.

Of course, this idea could just feel like too much.

The key for our family as far as anything goes with teletherapy is to give ourselves permission to take a step back.

Some days, my little guy is too cranky to make a therapy session productive, so I just ask if we can have a grown-up conversation about strategies during the session and let him do his own thing.

Some days, the session just isn’t working, so I ask if we can cut it a little short.

The operative word in those previous sentences is ASK.

Your therapy team wants to make this work for your child and your family, but they can’t read your mind.

Being an effective team means asking for what you want or need and helping each other help your child reach their goals and milestones.

 

 

After ICU, the high dependency unit is one of the busiest places in the hospital.

Monitors constantly sing out their soft beeps, keeping an eye on heart rates, oxygen levels, breathing rates… pumps managing feeds, IV fluids, TPN, infusions alarming every so often as a child moves, causing a kink in a tube.

Or fidgeting in their sleep, the SATs probe attached to a finger or toe momentarily losing connection.

I’m sitting in the corner of our room, under the only light now still on – my precious boy sleeping softly in the bed next to me.

I can’t get any closer to him, there’s too many drip stands and trolleys holding equipment… the syringe driver used to deliver a phosphate infusion extremely slowly to prevent catastrophic rebound effects, the BiPAP machine that has helped him breathe for the past two weeks we’ve been here.

Another drip stand holds his IV fluids bag, TPN bag and a bottle of his usual formula feed, slowly dripping into an NJ tube; while we get him back on normal feeds it’s the TPN that is providing him with the nutrients he needs, but the solution is irritating to the vein so a normal cannula in a hand won’t last very long.

To negate this, he has a long line inserted into his little arm with the tube passed up through the vein to the point where it opens into a larger one, meaning less of an issue with irritation.

Just under three weeks ago we almost lost him.

I was by his side when his lung collapsed and he went into respiratory failure.

As I went into autopilot and jumped out of the way, the staff on the HDU saved his life.

As I stood frozen to the spot praying he wouldn’t leave me, that I wasn’t ready, those incredible people stabilised his vital signs and got him on the ventilation support he needed within minutes.

Even while they were working on my boy, they were asking if I was ok.

The love and care they have shown my son and us as his parents has been second to none.

That night, despite covid-19 restrictions, they allowed us both to be with our boy.

They sat and cried with me, explained each procedure, made us laugh and have cared for our child as if he were their own.

But still, there is a deep loneliness here that only other HDU or ICU parents will understand.

It’s the pain of being separated from our partners, other children (furry, in our case), and the fear that our children may not improve.

The feeling of helplessness is crippling.

While I love the staff here dearly, I cannot for us to be together once more as a family… because that is where our strength comes from.

For now, I will sit and watch over my sleeping child, with the monitors for company, until he is well enough to come home.

“Mommyyyyy! He’s sitting! He’s SITTING!” my four-year-old shouted from the other room.

Sure enough, I turned the corner and saw that my two-year-old had pulled himself up to sitting for the first time on his own.

Needless to say, this moment was huge for him and for our family.

One of the coolest things about it, though, was that my daughter, who very rarely seems to recognize that anything about her brother is different was just as excited about it as I was.

She cheered him on and kept him interested so I could take a picture before he fell over. And, when she told her daddy about it later on, her excitement had not subsided.

Aside from growing my mom-heart about ten sizes, this moment reminded me of something I often forget: Siblings are on the roller coaster too.

Although she is only four and can’t understand her brother’s special needs like her dad and I do, my daughter knows that her brother spends more time in the hospital, has more medicines, special seats, and other equipment, and just has more challenges than other kids.

She also knows that he has to work extra hard to do things that other kids don’t even have to think about doing.

The weight of that knowledge is something I wish my daughter didn’t have to carry, but, this is the hand we have been dealt.

Because my daughter carries the weight of some of the hard stuff, she also gets to experience the pure joy of the high points along with us.

Sometimes, especially when things are hard, we forget that there are gifts all around us, and I’m thankful that my daughter gets to experience the gifts of being a family with special needs.

I know that the things that she learns in the hard times are gifts as well.

So, today, here’s to the brothers and sisters.

We know you don’t always get the same attention your sibling does.

We know you have to make sacrifices.

We know you have to see and experience scary things and take on responsibilities that your friends don’t.

But, we also know that you are amazing, and we are so thankful for you.

You will soar and make the world a better place.

November is Epilepsy Awareness month and since I have a pretty awesome little guy who happens to have epilepsy, I figured I should really write about it.

I’m sure a lot of the parents on this page will know all too well about epilepsy and the effects it has on the individual as well as their wider circle of family and friends.

For those who don’t know as much about it, I hope this gives you a teeny bit more info to go on if you ever have epilepsy brought into your life in some way.

It is a neurological (brain) condition that means a person has a tendency to have multiple seizures i.e. not just a “one off” like a febrile convulsion (when the body’s temperature suddenly jumps up) for example.

It happens when there is a mix up in how the brain cells communicate, causing a sudden burst of electrical activity that disrupts how the brain normally works.

Doctors will diagnose epilepsy based on clinical history and/or an electroencephalogram (EEG) which detects if the person is having a seizure at the time of the test.

Epilepsy Action suggests there are eight different types of epileptic seizures, depending where in the brain the misfiring occurs as well as how severe it is.

Our little man has focal epilepsy of both aware and unaware seizure types.

This means that his seizures start in a particular spot, thought to be his right parietal lobe (based on his EEG results).

This is probably because he has hydrocephalus which is controlled by a ventriculoperitoneal (VP) shunt that may be affecting how his brain cells are talking to each other in that area.

They can then “generalise” which means it spreads to both hemispheres of his brain causing symptoms on both sides of his body.

Jacob is a full time wheelchair user so we don’t really know if his legs are affected when he has one, but he usually goes floppy and is unable to speak.

Over time he’s explained to us that his mouth “goes to sleep” and he “feels numb everywhere”.

Symptoms can vary and there are very tricky seizures where he has had very vivid visual hallucinations of a fire in the room.

How terrifying that must be for anyone never mind a six year old child.

His seizures used to respond well to rescue medications designed to stop them and allow his brain to rest; although recently he has become what they call “medication resistant”.

This means Jacob continues to have numerous seizures despite being on the maximum dose of three different anti epileptic meds.

He has been hospitalised due to epilepsy 11 times now because the rescue meds just don’t seem to work for whatever reason.

We’ve had to go through resus more times than I want to remember so that they can give him a paraldehyde enema then phenytoin infusion as second and third line treatments to stop the seizure.

It is very traumatic for him, us and his wider family.

We’re waiting for an MRI now that will hopefully give the neurologist a more clear idea of what’s going on.

What we also struggle with a lot is getting people to understand that Jacob IS having a seizure despite it not being the stereotypical tonic-clonic type where someone’s muscles stiffen (the tonic phase) and then jerk uncontrollably (clonic stage).

We’ve had paramedics asking if we were sure he was really having a seizure or was he not just drowsy from his rescue meds.

This is usually the point I turn into a bit of a psycho mummy and play the “I’m a trained nurse” card, which seems to work most of the time.

It is these times he is in a state of “non-convulsive status epilepticus” which is the medical way of saying he is having a seizure that isn’t stopping and is very much in trouble.

This is a medical emergency and really does need quick action even if it doesn’t look typical of epilepsy. Generally though the paramedics are absolutely amazing at keeping our little man as safe as they can.

So what’s the best thing to do if you see someone having a seizure?

Well, it really depends on what type of seizure they are having.

First aid advice for a tonic-clonic seizure is to not move them while they are experiencing jerking movements but to ensure they are safe by moving them away from any obvious danger e.g. a hot radiator.

If you can, try to time how long the jerking lasts and ring 999 immediately for help if you don’t know the person.

Some people will carry little emergency cards with information on the type of seizures they have and who to contact in an emergency so it’s a good idea to check for one of these if it’s safe to do that.

Epilepsy will always be part of Jacob and all of our lives, although I am hopeful one day he will be seizure free or at least have much tighter control of it.

In the meantime, it’s really a full time “job” (for lack of a better word) to make sure he is safe.

We try to take as many “positive risks” as we can and build happy memories as a family.

I’ve been advised, very wisely, to take things one day at a time so for now that’s what we try our very best to do.

Generally speaking, hospital stays tend to consist of a lot of waiting.

There’s the usual routine of observations, blood tests, and so on but mostly its all about waiting.

And if you happen to be on a long hospital stay, it can sometimes feel like it will never end. Its no fun for anyone.

Currently, we are in one such long hospital stay.

As the Dudes issues are many and varied, there genuinely is no end in sight while we work towards understanding what exactly is going on, and how best to deal with it to give him the best possible quality of life.

He would probably argue that staring at the ceiling of his room in HDU is NOT high on his list of enjoyable pass times, so as we are instructed to get him into his wheelchair as often as possible to help his chest we have become something of a family of officionado’s on suitable portable games for hospital.

As a family of board game fanatics, we have quite a range of games to select from when it comes to hospital entertainment – although some of the larger games aren’t exactly suited to the lack of space frequently encountered, there are a lot of smaller games which serve their purpose perfectly while fitting onto a narrow over-the-bed hospital table!

Roll for It is one such game. The players roll six dice in the hopes of matching the numbers shown on a set of cards, e.g. one card may require a 2 and a 5, while another requires six 4’s. Each card has a points value, at the end of the game the player with the highest score wins. As the game uses cards and dice, its easily portable and comes in a handy little tin.

Mr V recently picked up a tiny game, in a pack not much larger than a pack of playing cards, called Deep Sea Adventure, by Oink games.

This incredibly clever little game is played over three rounds, is wonderfully infuriating and is simple to learn and to play.

A larger game that is a current Sam favourite is Ice Team, where you play polar bears racing from one end of a water channel to the other collecting fish on the way; for those who fancy a collaborative game where you play as a team, we really can’t recommend Forbidden Island enough (although a little more detailed, so better for older children rather than younger ones).

Ensuring that we make time to play a game together while Sam is in hospital helps all of us keep our spirits up, especially on these longer visits when all our usual routines are gone to the wall.

Even if you’ve not really been interested in board games, I can definitely recommend giving them a try.

Everybody knows about Epilepsy, don’t they?

Almost all of us have at some point seen someone collapse to the ground and start uncontrollably shaking and becoming unresponsive.

Having a fit. Isn’t that what Epilepsy is all about? Surely, you’re born with it, so it’s something you, and your family get used to don’t you?

Well, no… that’s not it by a long, long way!

It’s over three years now since our teenage son James added Epilepsy to his growing list of conditions that already included Autism and Learning Disability, which he had been diagnosed with aged two.

As a result of Epilepsy, he’s added Anxiety Disorder to his list since then as well. Like most people, we had a very limited idea of Epilepsy before it entered James’ world and the last three years or so have been quite a journey for us all.

But let’s start at the beginning, mid-March in 2017, when something “unusual” happened with James at school.

I remember the ‘phone call’ clearly, it was early afternoon and I was at a work meeting about 100 miles away from home.

In the middle of the meeting my mobile ‘phone rang, the name of James’ school showing as the caller; I apologised to my colleagues and rushed out of the room to take the call.

“Something unusual happened with James just now”, the teacher calling me said. “It’s like he totally zoned out for about 30 seconds, his eyes were open but there was no response. Like the lights were on but no-one was at home, then all of a sudden, he was back with us again. He seems fine now.”

They kept an eye on James for the rest of the afternoon, he seemed fine and travelled home on the school minibus quite happily.

There were no further episodes, so it all was put down to James just ‘having a moment’ and was quickly forgotten.

We now know that what James actually experienced was an ‘absence seizure’, sometimes called a ‘petit mal’ seizure, a form of epileptic event, but more of that later.

Time passed, summer came and went (all too rapidly!), and autumn arrived. One mid-October morning we had helped James get up and get dressed; he was chilling out in his den while I went to the kitchen to get him some toast and a drink.

When I returned just 2-3 minutes later I found James having a full tonic-clonic epileptic seizure, sometimes called a ‘grand mal’ seizure. The sort of seizure someone who knows little to nothing about Epilepsy (which was us) thinks of as an ‘epileptic fit’.

He was lying down, rigid, jerking, losing consciousness and dribbling.

It was probably the most frightening experience of my life, I am so thankful that James remembers none of it.

The paramedics were there within minutes, while a very kind 999 operator helped me to keep calm and gave me things to check and do to make sure James was breathing properly, that he was safe from banging his head, and that I didn’t pass out too.

James came round again within a few minutes, and although he then slept for much of the rest of the day, he recovered fully.

We were then on the journey to find out what had happened, and why.

It turns out that Autistic children are much more likely to develop Epilepsy than their non-Autistic peers, with studies showing that up to (or even over) 30% of Autistic children also develop Epilepsy (in comparison to about 1% of non-Autistic children).

Two key times when this can commonly occur is in the pre-school age (James missed that one), and in adolescence (James got caught then).

In talking all of this through with James’ Neurology Consultant, it became clear that James’ absence seizure in school, as we only then understood that it was, was linked and perhaps his first epileptic episode.

We also discovered that when James occasionally ‘jerks’ or ‘twitches’, it’s not him just shuddering or shivering, it’s a ‘myoclonic jerk’, another form of epileptic event.

We’re still novices in this area, but we’re learning fast!

Since this started, James has had many more tonic-clonic seizures, mainly in little ‘clusters’ of two or three over a few days, often when he is unwell and overtired.

We’re getting used to knowing when to be looking out for more ‘myoclonic jerks’ or ‘absence seizures’ during these times too. Medication is helping now, but has taken a long time to get right with many failures along the way.

In the USA, November is Epilepsy Awareness Month, and there is a campaign to extend that to the UK as well.

During this month, have a think about your child or adolescent. Are they Autistic? If so, they are up to 30 times more likely to develop Epilepsy too.

Have they ever zoned out, gone blank for a few seconds? Do they sometimes twitch or jerk without reason?

Understanding these signs and seeking better awareness and knowledge of Epilepsy will help you and your child.

Seek professional medical opinion if you are at all concerned, but don’t ignore any signs; the unexpected sight of your child having a full tonic-clonic ‘grand-mal’ seizure for the first time isn’t one you’ll forget in a hurry.

Let this Epilepsy Awareness Month be an epilepsy awareness month for you.

When babies are born, parents instinctively check that all ten fingers and all ten toes are perfectly placed.

There was no need to inspect every inch of you, my tiny precious one. You were already perfection.

I only needed to hear your first cry. A boulder of worry was lifted from my shoulders at that very moment.

All the reassurance that I needed came from that one, long awaited, beautiful sound.

Knowing that there was breath in your lungs and strength in your heartbeat, every other detail instantly became insignificant.

You were here with us and that was absolutely all that mattered.

You began capturing the hearts of everyone in your path, from day one.

Your Daddy and I fell completely head over heels at first sight. Your big brother beamed with pride when he finally got to meet you in the NICU.

He was only six when you came along and I will always remember the tender look on his face as he exclaimed, “She’s AMAZING!”  You were so small, but the fight in you was mighty.

For weeks, we were intently focused on your getting stronger so that we could bring you home.

We never expected that our magnificent little gift from above would become such a catalyst for big change.

You quickly set us on a path towards becoming better people.  Your presence in this world instantly made our lives BETTER.

Now, in a few short days, you will be TEN.  Two whole hands.  Double digits.

Looking at your sweet face, watching you stretch your arms up to be held, I am so thankful for ten.

Sitting with you, reflecting on all the challenges you have gracefully overcome and all the steep mountains you have climbed, I couldn’t be prouder of where you are, at ten years old.

Reflecting on all the infinite lessons you have taught us, I am THANKFUL.

THANKFUL for the unwavering strength in you that has brought out the strength in all of us.

THANKFUL for all the moments of pure joy that you continuously bring to our lives.

THANKFUL for the true understanding that love needs no words.  Feeling the touch of your little hand on mine while I sing silly songs to you.…Seeing the light in your eyes and hearing you squeal in delight when your Daddy walks through the door…Beautiful reminders that  “I love you” can be expressed without a spoken word.

THANKFUL for the wisdom you have instilled in us that we must always focus on our abilities.

THANKFUL for every magical moment I get to spend with you.

THANKFUL for ten years of being your Mom. There is no greater honor in this life than taking care of you and your brother. Ten years have gone by in a blink.  I hope and pray every day for at least fifty more.

THANKFUL that at ten, you still love to snuggle as I read your favorite book to you. I feel as if the words in the story were written specifically about you.

“Heaven blew every trumpet and played every horn on the wonderful, marvelous night you were born.”

Happy 10^th Birthday, sweet girl.  I am so incredibly thankful for you.

As of June of this year, our little family left the good ol’ state of Texas and moved up North to Maine.

It was quite the drive, lasting us four days and one tire blow out!

This drive was not easy with 3 kiddos in the mix and a few of our pet birds; but we made it.

Now in October five months after the big move, I am in the ugly hassle of transferring not only records for school but health records.

Normally, this would be pretty easy only consisting of wellness check ups and visits.

Unfortunately, this is not the case when you have a child or children with any type of health problems/diagnosis.

Diagnosed with spina bifida, Oliver has seen doctors since the very first day he made his appearance on Earth.

When I saw doctors, I am not only talking about pediatricians, but: urologists, podiatrists, neurologists, orthopedists, physical therapists, and the list goes on!

His amount of medical records could put the Harry Potter series to shame.

So as you can imagine, getting the whole gang to hop on board and get these records over to the new facility takes quite some time and hiccups.

The downside to this, is he cannot see anyone for routine care until they know his background.

This not only keeps them in the loop for the very specific care Oliver needs, but it allows them to send and refer us to other’s who can help.

In the world of healthcare, where technology is always advancing, transferring medical records is not my favorite nor the quickest thing to do.

I am glad to announce though, that despite the current pandemic going on, transferring school records and starting up Oliver’s new care plan for school has been awesome!

Although Oliver does not need any cognitive assessments or guidance, he does have a care plan for physical therapy offered through school.

Can I just say thank goodness for video calls??! We have already started our physical therapy through video chat, and have found awesome resources we did not even know we had in our own home.

For example, we use soup cans for building arm strength! Need help building core strength? Who knew a stepping stool and a box with scarves or clean face masks could do the trick.

Moving across the country definitely was not the easiest thing, and still continues to be a transition in progress; but I have learned through other families to continue advocating and pushing for what your child or children need.

Building from the ground up again, we will hopefully get to a care plan soon that fits our family.

Until next time, pray the fax machines don’t give out when sending our pages and pages of care history.