Anyone else very bored of shielding now?! Oh, good. Not just us then.

Folks, I am going to be brutally honest here… while I love seeing friends and family, I am very much a homebird at heart; happiest when in my own space with my close family with me. As such shielding really hasn’t been as difficult as it could have been. But now, after so many months of not seeing other people and remaining at home, I can safely say I’m ready for a change of scenery…

When the Government suddenly announced a few weeks ago that ‘shielders’ could now go outside for exercise, my first thought was to grab the dog and go for the longest walk I could manage. Then the reality of having been isolated for many weeks hit – the prospect of leaving the safety of our home/garden triggered a wave of anxiety that was intense even by my standards.

Since then, we have slowly increased our adventures out of the house, even managing to take the Dude to town one (rainy) afternoon before all the shops were allowed to reopen.

We’re still here, and still shielding. At the end of July this will end, apparently, except it really won’t will it? Those of us who have been isolated like this need to rebuild our confidence – I will have to somehow manage the anxiety of Sam returning to school, alongside the fear that either his Dad or I may come into contact with the virus and pass it on to him.

That is my greatest fear.

We need to build up our support network again; my Mum who we usually see every weekend or at worst once a fortnight hasn’t now been able to stay since February. We have managed a couple of socially-distanced garden visits, but not being able to hug her is awful. Trying to work out a way of managing/mitigating the risks to Sam while opening our doors to carers again, including Mum, is currently consuming most of my night time hours.

Mum lives with my brother, sister-in-law and their three children; I’m going mad trying to work out how to manage the risks and am certain that they are far bigger in my mind than in reality. Unfortunately, that does not make them any easier to confront.

At the same time, all of us are growing increasingly restless and are itching to get back out into the world and start visiting some of our favourite places again. As the rest of the country slowly starts to relax and get back to some semblance of life-precovid, we will have to take things rather more slowly. While we’re moving closer to the finish line, we have a little way to go yet. Chin up folks, must be time to put the kettle on (again).

You should know about UDL – Universal Design for Learning

Every child has the potential to learn from their environment!  As a society, have we made it as easy as possible for these children to learn, play and move amongst their peers?  Probably not!

UDL (Universal Design for Learning) is a philosophy that creates an environment that everyone can access in order to learn, and then actively show that they have learned something from this exposure.

It is incumbent upon us (the caretakers, the family, the educators, the school, the stores, the transportation system, and the workplace) to be creative and design an environment that is accessible to any individual.  The changes that we make may be low tech or high tech, in school, at home or at work, and will look different at every age, but the concept stays the same.

The main principles of UDL are as follows:

1.  Teach or play in different ways. Use visual cues, auditory cues, tactile cues, sensory cues, and movement.

2.  Watch your child’s cues. Let a child show you what they’ve learned.  For the little ones, read their cues. For the older ones, this may be an art project, a written project or just a discussion.

3.  Provide support to keep child engaged and motivated

This will look different depending on the age of your child, their motor and cognitive abilities.  However, to help your child become an active participant in their environment some recommended strategies include:

1.  Provide adaptive seating, or upright support, as needed.

2.  Set up activity (work or play) for success! Make it easy, and then increase complexity and slowly implement minor changes to the set up.

3.  Ask your child show you that they recognized, enjoyed or want more of what you were doing. This may be drawing, writing, or acting for some.  This can also be by singing, moving, smiling, or looking to let you know that enjoyed that.

UDL simply gives each child the same opportunity to succeed by removing barriers AND creating opportunities for experiencing the world. Get creative!! Think UDL at home, share these successes with your child’s teacher and other parents, and hopefully this can pave the path for ongoing success. I promise you that your children will constantly surprise you if you set the bar high.

Dr. Sharon Galitzer PT, DScPT, MS, CIMI

Pediatric Physical Therapist

This is a phrase I see so often, and one that resonates with me strongly. In my line of work (legal) advocacy is a pinnacle part of day to day life. The legal arguments are key, but what is often more important is the way in which you advocate.

Can you convince others, through spoken or written language, to side with you, to see your way of thinking and to agree? It sounds straight forward, but there are multiple sides to each story (often more than two) and it is not always the case that one way is right. There is not always an answer or solution.

Since becoming a mother, I have learnt to advocate far more than I ever did at law school and in some very strange circumstances. As a mother, you are often seen to be irrational or overreacting. It is as though others think that you lose all ability to think clearly and to process information once you become a mother.

Only this week, I have been told “you want solutions straight away and don’t stop to think about the wider implications”.

This follows Alfie being admitted to hospital again, seriously unwell and me voicing my opinion about what I think is the cause, and the possible solutions I would like to be considered. Me, as his mother, the person who is with him each and every day, the person who knows what her child is feeling though he is unable to verbalise it, the person who meets his needs each and every day.

And yet I was swiftly dismissed with strong implications that the doctor felt I was exaggerating Alfie’s condition, and that there was no way Alfie could be vomiting 40 times a day. Yet Alfie has lost a kilogram in under 3 weeks, and so though the doctor placed seeds of self-doubt in my head, I did not let it go. I pushed for him to have bloods done, and for a second opinion which ultimately confirmed I was right. I made sure my voice was heard and that my child got the care he needs.

I have no medical training, yet due to being a parent of a child with additional needs, I know far more than medical professionals expect. I do my research and do not let them bully me. They may not like it when I disagree, but I will not stop if I think they are wrong.

They have had the medical training, but it is me that cares for my child each day. I am the one who is expected to act as his carer despite having only been shown how to do something for half an hour (if that), so I’ll be damned if they think they can dismiss my opinions without a second thought.

Many parents of disabled children will have been through a traumatic experience: seeing their child go through invasive medical interventions, difficult birth, or even day to day cumulative traumas and may show ‘evidence of post-traumatic stress’ [i].

As parent carers we usually come into contact with medical and other staff more often than parents of children who are typically developing.  Every experience of contact is potentially retraumatising and the quality of the interaction of utmost importance.  Emerson states ‘UK services are not designed to support traumatized parents, and health practice may serve to compound distress.’

Through my research into emotional wellbeing in Parent Carers, parents have reported how understanding, compassion and empathy can make a big difference.  Knowing that someone really ‘gets’ that you may be exhausted, overwhelmed and struggling rather than being faced with judgement or dismissal can have a positive impact on our wellbeing.

Services can benefit from working in a trauma-informed way recognising that traumatised individuals have two main requisites:

The need for physical, psychological and emotional safety through trustworthiness and transparency

Opportunities to build a sense of control and empowerment through choice, collaboration and equality

Something simple like a recent blood test for my son brought up all sorts for me.  A potential long wait at the hospital + preparing him + my worries regarding how he’d react + bringing back upsetting memories of other times we’ve been at the hospital + no recognition from others than this was hard = I felt upset and on high alert.

In the end my son was fine, but I needed some time to recover afterwards that involved going for a nurturing coffee (me) and chocolate cake (my son) to create a positive ending to the event.  The feeling lingered though and made me think how often parent carers rush from one appointment to work, to another appointment and then back to the busyness of home without acknowledging the personal toll.

We need a safe space to re-charge.  We need compassionate, understanding and timely support from others to help us hold the emotional load that we carry.

Sometimes we just need someone to notice and ask how we are.

For more advice and tips on wellbeing please visit www.affinityhub.uk

[1] Emerson, A. (2019) ‘Room of Gloom’: Reconceptualising Mothers of Children with Disabilities as Experiencing Trauma, Journal of Loss and Trauma, DOI: 10.1080/15325024.2019.1658946

Please note:  Post traumatic stress is a common reaction to a shocking event or events in our lives. It only becomes a disorder when it goes on for a long time and affects our functioning.  If you are experiencing: flashbacks, intense memories of a traumatic event, heightened startle reflex or hypervigilance which are affecting your overall mood, making you avoid certain places or things, affecting sleep or your concentration for more than at least one month after the event please talk to your GP about a referral for psychological support – such as Trauma Focused Cognitive Behaviour Therapy (TF-CBT) or eye movement and desensitisation reprocessing (EMDR).

Some of the most widely loved and memorable animated movies ever made have been created and distributed by Disney and Pixar, now part of the same media company.

Many of these movie classics include characters who have, or may possibly have, additional/special needs or disabilities of some kind.

Some of these characters, and their stories, can be helpful in raising awareness and in some cases acceptance of additional needs and disability. For children and young people with additional needs or disabilities, some of these characters (but perhaps not all, as you’ll see!) can be used to show them that they are represented in these movies, that there are characters that are like them.

Each of these characters can be good discussion starters, but do be aware that these are animated characters, they are not real, and in some cases,  we can only speculate about the additional needs or disabilities that they may have been created with. While we should never ‘diagnose’ a child or young person unless we are medically qualified to do so and are engaged in this process professionally, we can, perhaps, speculate more regarding animated characters.

Some films/series are seemingly full of characters with additional needs and disabilities,  step forward ‘Toy Story’, ‘How To Train Your Dragon’, ‘Finding Nemo/Finding Dory’ and ‘Winnie-the-Pooh’, for example, while others still have a bit of representation going on. I will have missed loads, and some of those suggested to me were left out as they aren’t ‘classic’ Disney or Pixar (so, ruling out the Marvel Cinematic Universe and the Star Wars film series on this list, for example, maybe something for another day), but there are still plenty for us to explore.

If I’ve missed any obvious characters that simply must be in this list (quite likely), or have grossly misrepresented a character (entirely possible), do contact me and I’ll try to add them in/amend their details. In the meantime, here they are, in film alphabetical order:

A Christmas Carol

Year released: 2009

Characters who have/may have additional needs or disabilities:
Tiny Tim – has a limp and uses a crutch, is in poor health, possibly due to rickets or polio

Finding Nemo/Finding Dory

Year(s) released: 2003/2016

Characters who have/may have additional needs or disabilities:
Nemo – he has a deformed fin on the right side, which is called his ‘lucky fin’.

Dory – she has short term memory loss

Pearl – the little pink octopus in Finding Nemo who has one tentacle that is shorter

Sheldon – the young seahorse with a water allergy

Jacques – the shrimp in the dentist’s fish tank in Finding Nemo who may have OCD

Destiny – the shark in Finding Dory with visual impairment

There are also some of the other characters in the dentist’s fish tank

Float

Year released: 2019

Characters who have/may have additional needs or disabilities:
The boy – based on Alex, the Autistic son of the writer/director/producer, Bobby Rubio

Here’s a separate blog I wrote about ‘Float’ when it was released, including an endorsement from Bobby Rubio himself: https://theadditionalneedsblogfather.com/2019/11/19/float/

Frozen/Frozen 2

Year(s) released: 2013/2019

Characters who have/may have additional needs or disabilities:

Elsa – various theories suggesting she may have depression, social anxiety disorder/social phobia, and or Obsessive Compulsive Disorder

How to Train Your Dragon (series of films, OK, I know it’s Dreamworks, but it’s too good to miss out so I’ve made an exception!)

Year(s) released: 2010-2019

Characters who have/may have additional needs or disabilities:

Hiccup – has a prosthetic leg after losing the lower half of his leg in the battle against Red Death.

Toothless – has a prosthetic tail

Various other characters with prosthetic limbs including ‘Gobber the Belch’, who also makes prosthetics for others.

Kim Possible

Year released: 2019

Characters who have/may have additional needs or disabilities:

Felix Renton – is paralysed, uses a wheelchair in this Disney series

Lilo And Stitch (series of films)

Year(s) released: 2002-2006

Characters who have/may have additional needs or disabilities:

Lilo – there is a suggestion that she is Autistic, as she stims, is socially isolated from her peers, and she has unusual and obsessive hobbies, but there is also an argument that she could be suffering from PTSD due to the loss of her parents.

Stitch – However, if Lilo is Autistic, then Stitch makes an awesome Autism Assistance Dog!

Moana

Year released: 2016

Characters who have/may have additional needs or disabilities:

Hei Hei the rooster – Possible Dyspraxia and Learning Difficulties

Tamatoa the crab – Possible narcissistic personality disorder and body dysmorphia

Some people have speculated about Moana herself, but although she breaks the mould and behaves differently to the expectations of her father etc. she isn’t disabled

Peter Pan

Year released: 1953

Characters who have/may have additional needs or disabilities:

Peter Pan – gave his name to a mental health condition, an inability to believe they are older

Hook – is an amputee

Snow White and The Seven Dwarfs

Year released: 1937

Characters who have/may have additional needs or disabilities:

The seven dwarfs – have dwarfism

Dopey – also has mutism

The Hunchback of Notre Dame

Year released: 1996

Characters who have/may have additional needs or disabilities:

Quasimodo – has a deformed back from birth, and has acquired deafness

Toy Story (series of films)

Years released: 1995-2019

Characters who have/may have additional needs or disabilities:

Buzz Lightyear – Spends some time as an amputee

Wheezy (the Penguin) – has lost his ‘squeaker’ and has asthma

The various ‘mutant’ toys in Sid’s bedroom and yard

In Toy Story 4 there is a child with a cochlear implant who is deaf or hard of hearing

Other suggestions include Forky in Toy Story 4 who is made up of broken items.

Winnie-the-Pooh (series of films)

Year(s) released: 1977-2018

Characters who have/may have additional needs or disabilities:

There has been much speculation and debate that all of the main characters in the Winnie-the-Pooh series have a mental health condition disability/diversity of some kind, and while this may be stretching things a little, there are three characters in particular that are clearer:

Eeyore – It seems likely that Eeyore journeys with depression

Piglet – Seems to experience generalised anxiety disorder

Tigger – Could well have Attention Deficit Hyperactivity Disorder (ADHD)

Possible, but maybe less likely (?), include Owl (Dyslexia, he struggles with spelling), Rabbit (Obsessive Compulsive Disorder, everything in the garden must be neat and tidy), etc.

Wreck It Ralph (series of films)

Year(s) released: 2012-2018

Characters who have/may have additional needs or disabilities:
Vanellope von Schweetz – has a ‘glitch’, fictional ‘pixlexia’ “a code-reading disability”

Honourable mentions also go to:

Ariel – the mermaid in ‘The Little Mermaid’, mutism, mobility disability when she gets her legs back and struggles to walk?

Dumbo – different, rather than disabled

Flash – the sloth in ‘Zootopia’ – Bunny gets annoyed with him for being slow

Goofy – ADHD?

Kaa – the python in ‘The Jungle Book’, has a sinus problem

King Fergus – Merida’s Dad in ‘Brave’, has a prosthetic leg

Lewis – in ‘Meet The Robinsons’, is an obsessive inventor and social detached, Autism?

Rapunzel – PTSD? Autism? (see also Lilo And Stitch, above)

Russell – the boy in UP, ADHD?

I hope you’ve found this list interesting and helpful; maybe there were more Disney Pixar characters with additional needs or disabilities than you thought (and I’m sure this list isn’t exhaustive!) But some of those that are there provide us with some useful examples of characters that the children and young people we journey with can in some way connect with (although hopefully not Tamatoa, or Hook!)

Let me know if you find some more to add to this list!

Keep swimming,

Mark

Image, film and character rights: © Disney © Disney•Pixar. All Rights Reserved.

Nearly four months ago, the entire world turned upside down.  Everything that was “normal” came to a screeching halt.  Since the onset of the COVID-19 global pandemic, I have found myself on a perpetual rollercoaster ride of emotions.  A never-ending series of twists, turns, tumultuous bends and hurling spirals.  Being the parent of one child with multiple disabilities and complex healthcare needs, and one teenager on the Autism spectrum, I have fortitude.  I feel that my typical daily life has helped equip me for the logistics of this and has given me endurance to weather the duration of the storm.  Staying home, avoiding crowds, and wearing a mask have not been tough to comply with; this has been the easy part.  However, throughout these strange times, I have felt the steady weight of swirling emotions.  Some days, their weight has been quite heavy.

Worry.

Worry over EVERYTHING.  The worry over my vulnerable child becoming ill can be all consuming.  For her, a cold is never JUST a cold.  I also worry that missing months of vital therapy sessions will cause her to regress.  I worry for my husband’s physical and mental health, as he works in a healthcare setting.  I worry for my teenage son who is lacking crucial face-to-face social interactions.  Worry is consistently at the forefront of my mind.

Isolation.

Not ready to venture out, or let our guard down, our family maintains little contact with those outside of our own home.  We’re just not there yet.  Close family visits us outside in our yard, keeping a safe, six-foot distance.  We turn down invitations and we stay home.  We shut out our essential outside supports and respite.  Some days, it’s hard not to feel tired and weary.  Nevertheless, we remain steadfast, knowing that every single act of sacrifice, although difficult, is worth it.  We are keeping our children safe.  Isolation that began swiftly and has carried on for months leads to stress.  It can be overwhelming; prioritizing a bit of self-care is key.

Anger.

I am bombarded daily with social media posts, often by people that I once respected, demanding that this is being blown out of proportion.  Some even calling it a “hoax.”  I read comments from those who are eased by their belief that it “ONLY affects the elderly and the vulnerable.”  As if the “ONLY” category is unimportant or less than.  I am angry.  How did our community lose its sense of compassion?  Witnessing our society downplay the seriousness of this pandemic, refusing to wear masks; it becomes hard to not find moments of anger.  I have lain in a hospital bed, holding my daughter as she seized uncontrollably from a fever, brought on by a common childhood virus.  That terrifying experience stays with me.  I am angry that my legitimate concerns for my child are minimized by others that could never understand walking in my shoes.

Sadness.

I miss hugging my parents.  I am fortunate to have them as my neighbors, but it’s painful to watch them leave my driveway, after an outside visit, without being able to hug them goodbye.  Sadness moves in when I envision my children playing with their grandparents and lovingly, closely interacting with them.  I’m sad because I long to visit my own grandmother, but due to her underlying health condition, I feel that I should continue to wait.

Gratitude.

I am grateful for my family and the love that resides in our home.  I appreciate all that we have.  I am grateful for days playing in the sunshine and all the simplicities that we once took for granted.  Extra time together has been a gift.  Front porch sitting, backyard bonfires and blowing bubbles on the lawn have become cherished pastimes.  Finding joy in troublesome times keeps us hanging on.  Knowing that we will continue wading our way through these obscure waters together generates a most profound sense of gratitude.

Hope.

I am hopeful that this will not last forever.  I sincerely hope that many of us will emerge stronger and more compassionate once this is all over.  Surely, there are other parents out there that must be reeling from many of these same emotions.  I am hopeful for them, too.  I look forward to embracing my parents, seeing friends and loved ones, and someday returning to our own version of normalcy.  Until then, I will continue to take this process day by day, breathe through all the emotions, and tightly hold onto hope.

Play, Play, Play!

Do you ever find yourself mindlessly scrolling on your phone while your child plays? I know I have and during this time I am working on putting my phone down, engaging with my kids and playing with them.

The twins are 4 now and they won’t be asking me to play with them much longer. Sometimes my daughter dutifully reminds me to put my phone down, (engage the mom guilt).

In a world where technology is at our fingertips, I am finding it increasingly difficult to remain present. When my phone pings with a text, email or notification I want to look down immediately. I know I am not outside the norm in this.

There is a lot of science behind the impulse and endorphins of picking up your phone when you hear a notification. It is something that many of us have to actively work at NOT doing when we hear the notification. I am even guilty of picking it up mid conversation with someone. It’s almost second nature and it shouldn’t be.

Technology has been a huge help to us as a family.

Sawyer’s communication as well as life saving devices rely on technology, but the simple act of play should not. As a family we are having phone free dinners. We are talking and enjoying our time together. We ask questions about our day and discuss the highs and lows. It’s only about a half hour but it makes a big difference to us and my daughter.

We have begun to put our phones down and engage in play with her. It’s amazing how much you can learn through play with your child. Kids are always listening, and they are looking to us to be role models.

Isla and I were walking to school. There was a student who stopped to walk with us down the hill to school. Isla felt uncomfortable with this so increased her pace with her assistance dog and started walking ahead.

I struck up a conversation with this young lady and started making small talk asking her about school. “What year are you in?” I asked, “What are your plans for Secondary School?”. Presuming she had an interest in Isla and her dog I asked, “So do you know much about Room 29 at school” (aka as the satellite class)? At first she was puzzled and then said “Oh yes that’s the class with the weird kids”.

My heart sank.

“They aren’t weird they are were just born a bit different” I replied. I was scrambling to provide a teachable moment. “It could be your brother or sister”. “All the kiddies have different qualities” I went on. “They can be funny and have the kindest hearts”. “Isla is so sweet”, she replied. “I can see that and I always feel bad when the other kids make fun of them” she said.

My heart sank further.

We were then at the school gate and I was happy to get away as I really didn’t want to hear anything more. I was also left with so much I wanted to say. I wondered if I had said the right things to defend our kids. Did I change this student’s view of the “weird” kids at school?

Should I have insisted she stand up and question those fellow students when they said nasty comments about Isla and her classmates?  Should I have given her some different word options other than “weird”! “And if so, what?”.

This truly came from the mouth of babes. Of course I am naive to think this doesn’t happen to some degree at school. I often see it from the look on kids’ faces without them having to say anything at all. I am just grateful it all goes over Isla’s head. My sweet girl who thinks she’s unique and special and not weird at all.

I still remember the day Annabelle sat in her first wheelchair, a powered wheelchair, on 13 March 2019. She was two years and 4 months old.

We turned up to the assessment in which Annabelle was set up in the powered wheelchair and had to show that she had sufficient cognitive ability to move the chair forward, backward, left and right and listen and understand some basic instructions: to go and to stop. It didn’t need to be perfect but she needed to prove she would be able to learn how to operate the powered wheelchair for us to be able to take it home.

Annabelle has always been cautious and reserved around new people and so far that hasn’t changed with age. She would always rather stay with me or her dad then get involved in an unknown situation. It can be frustrating for us sometimes (especially when it ends with tears) but I completely understand why she is that way.

I cannot even begin to imagine what it feels like for her to have the ‘device’ she uses to assist her moving her arms and legs and to support her in sitting just removed leaving her vulnerable. Being taken completely out of her comfort zone and entering a place of fear knowing that if she doesn’t like the unknown situation she cannot move to get herself out of it.

I placed Annabelle in the powered wheelchair. Immediately you could see the fear in her face.

She was sat in an unknown object with two strangers checking the set up and giving her directions BUT her hand was placed on the joystick, light pressure applied and suddenly she was moving. No other person was touching her but she was moving!!!

The fear vanished from her face and instead it lit up. She looked over to us and laughed. This was the first time Annabelle had been able to move away from us and at speed!

A year and a bit later the love for this piece of equipment has just got stronger, we love nothing more than going to large fields and just letting Annabelle go off and explore in her powered wheelchair. There is nothing more enjoyable than watching from a distance and seeing your non-mobile child being able to move around in her chair enjoying the independence it provides.