Terminology and special needs parenting

I was recently scrolling through Facebook and saw a post calling for recognition of the fact that we should refer to people with autism as “autistic” as opposed to saying they are “people who have autism”.  There was also discussion about the term autism spectrum disorder (ASD) causing offence to those affected by it.

As a trained learning disability nurse, this confused me. I was taught to put the person first and the need second, for example I am a woman who has Multiple Sclerosis (MS), not an MS person. Our son is also a boy with spina bifida (I’ll not list the rest!), not a spina bifida patient. I don’t work anymore but I remember writing a lot of notes about people who “had autism” instead of saying an “autistic person”. 

The original post really gave me food for thought.

To me, this is a return of language that would have been previously known as offensive to call someone autistic instead of rephrasing this to a person with autism. A mum commented and explained to me that her son has brown hair, blue eyes and autism. It wasn’t a condition to be cured, or something to be ashamed of. I read a lot of similar comments from parents and individuals themselves who all wished to be referred to as an autistic person. Surely this is their absolute right to ask people to refer to them in terminology they find acceptable?

It made me think about all the ways people discuss my son. Conversations usually start with “what’s wrong with his legs?” or “why is he in a wheelchair?”. The worst one for me is “can he walk?” because I often find people are so caught up with the idea that being unable to walk automatically means you are unable to be happy

That’s simply not true.

So many people who are able bodied are depressed while a lot of wheelchair users are not. This situation is obviously reversible, but the point is, I doubt walking is the main deciding factor in good mental health.

Historically, people would have used incredibly disrespectful language to describe people with downs syndrome for example, which I’m not even going to repeat because it’s just so appalling to me. There was also terminology to describe those with complex needs that reduced them to being almost subhuman.

Thankfully we have moved on and learnt from past mistakes to create a more inclusive society.

Having been surrounded by disability for many years now, I am really conscious to try and learn from other people what they want when being talked to or about. The only way we can move towards better inclusion as a society is by listening to the people living that life and learning from their experiences.

Explaining death to a child with additional needs

*Trigger Warning: Discusses death*

At 100 years of age, my Granda sadly died recently surrounded by his children in his own bed free of pain or distress. It was what I would consider a “good death” as both his granddaughter and a trained nurse.

It was such an achievement to live to 100 years old and he was an extraordinary man who lived a very interesting life.

I’m Mum to 8-year-old triplets who lost my paternal Nanny in 2019 when they were a little bit too young to understand the “finality” of it all.

When their Great Granda died, it was definitely more deeply understood by Ben and Chloe, although Jacob struggled with the concept due to his brain injury (acquired hydrocephalus secondary to spina bifida).

I reached out to a child bereavement charity who offered excellent support and suggested books and other resources to help explain what it all meant

Sadly, Jacob didn’t really seem keen to engage with any of it and seemed quite disassociated with what was going on. They were given the choice if they wished to go to his funeral or not, and they chose to go.

On the day of the funeral, I explained to Jacob especially that there would be a coffin there. He inevitably asked what that was and meant, which entailed further discussion.

It is really so hard to know how much detail is appropriate for a child of 8 years old, never mind his added learning disability. He seemed to have a degree of understanding but became quiet when we entered the church.

He held my hand through the whole service and was just so quiet.

Anyone who knows him would laugh at that since Jacob is very rarely quiet!

When the coffin was taken out and we all went into the next room for refreshments, Jacob burst into hysterical tears.

It went on for what seemed like a very long time and my heart really ached for him. I think seeing the coffin, and understanding the significance of that, finally hit him.

All I could do was sit with him quietly and be there in case he wanted a hug or to talk.

He eventually calmed down and became his usual bubbly self, but I think sometimes there is a temptation to hide the reality of death from children, especially those with additional needs.

While it is every parent’s choice how much to tell their little ones when big things happen, I try to always be upfront and honest with my three.

I obviously censor things to a degree and have to alter how I tell Jacob at times, or repeat the message until it sinks in for him, but I’ll keep doing that because I truly feel that it is teaching them all about the full range of human emotions

What do you remember?

2020 was a year that changed everything for the whole world. The past two years have been scary, between trying to keep families together and safe without knowing what lay ahead or what the outcome would be. A constant threat of contracting a virus that the medical profession knew little about. But it’s not what I primarily think of when people speak of 2020.

Why 2020 was such a bad year for us

Why? Because that was the year our son’s epilepsy and hydrocephalus went out of control. He was having almost constant seizures and needed to be transferred to resus at the regional children’s hospital on numerous occasions. It got so bad that the local paramedics would come in and say, “how many this time?” and just help me out to the ambulance. Being greeted at the doors by a resus team was terrifying. It happened more times than I care to remember. He was transferred from our closest hospital to the regional one. They felt he would need to be put into an induced coma and cared for in PICU because they just couldn’t get on top of the seizures. I really thought we were going to lose our precious boy.

We were in and out of hospital constantly and with the threat of covid-19 hanging over everyone, it added more pressure to an already desperately hard situation. It turned out he needed two shunt revisions in August within 48hrs of each other and then another in November. Despite him having seizures that do not leave him deprived of oxygen to his brain. He suffered massive regression of skills and escalation of behavioural difficulties. An MRI of his brain showed no changes, but the team felt it had all just been too much for an already compromised child to cope with.

Things have started to look up

He was moved from a mainstream to special needs school after educational psychology said he was in a “trauma response” and needed pastoral care more than delivery of the curriculum. In hindsight, it was most definitely the best thing that could have been done for him. He’s now been in that school for a whole year, and we feel we’re getting our happy boy back! He is making friends, especially a special little girl who sits beside him. Apparently, they are getting married, although the jury is out on where they’d live since Jacob wants a treehouse and his love would like a castle.

As our son started to heal, I feel like I have too

I feel the teachers have just “got him” and have worked on a very simple behavioural plan that is now carried over to home as well. He has done so well with it. All we need now is a little laminate on the back of his wheelchair to visually remind him that he gets two “warnings”. Which are yellow faces, before a “consequence” of a red face. He still has meltdowns and sensory issues, as well as times where he “zones out” and can’t cope. These are getting fewer though and I feel like I know how to cope with them better. He sees a psychologist in school who he calls his friend because they play games together. She has helped him so much! As he has started to heal, I feel I have too.

We are though the worst of it now, we are so grateful

We will always remember 2020 as the year he was so unwell. But I know that millions of families across the world experienced much worse than and have lost loved ones. We feel like we are through the worst of it now and can enjoy things together as a family of five again which, is something to be hugely grateful for.

Prevention is better than cure

I vividly remember bringing the last of our triplet’s home to join his identical twin and fraternal sister. It was such a huge relief to finally see our three gorgeous babies together again where they belonged!

Jacob stayed in hospital for six weeks (four more than Ben and Chloe) having been born 2 months premature. He has the most severe form of spina bifida which is known as myelomeningocele. Meaning his spinal cord and meninges were in a “sac” on his back. This couldn’t be closed until he grew bigger, so we had to play the dreaded waiting game

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It was amazing to be doing something ‘hands on’

I remember sitting in SCBU with Jacob doing exercises given by the physio to help his feet which were turned inwards. It felt so good to be doing something “hands on” with him. After so much time was spent talking to him through the incubator. It is so hard to feel so distanced from your own baby. So, I was more than willing to do anything to help! This early intervention has meant he was able to be cast for splints when he was older without having any surgery.

Once his back was closed and a shunt put in to manage his hydrocephalus, he came home. And we were suddenly responsible for all his care. Despite my background as a nurse, this was really scary. I kept thinking “What if I get it wrong? What if I miss something important? How can I help?”.

We had brilliant support from community teams

Thankfully, we had brilliant support from community teams including nursing, physios, OT’s, dietician, GP etc. As Jacob grew and his needs changed, we would reassess and learn new activities to help him develop strength and prevent further disability. A big part of that was posture management.

All our family knows I am very particular about how Jacob is positioned. This has been the case since he was a baby and was fortunate to be loaned a set of foam rollers etc with Velcro. Much like Firefly’s “Playpak” which I didn’t know about at the time to do some exercises he would otherwise have found very difficult. I used these every day. Usually doing stretching in the morning and then supporting him to sit upright in the afternoons. Jacob had a Pavlik harness on for hip dysplasia. I was always very aware of keeping his pelvis in the best possible position. This was not always easy with two other babies who were also growing in strength and learning to crawl over to “help” with Jacob. But I really do believe early intervention is so important.

It was pretty scary to have a two-year-old in a big wheelchair

Due to all the work everyone had done with Jacob, he was able to get his first self-propelling wheelchair having just turned two! He called it “raa raa” after his favourite show at the time. He was amazing in it! And the wheelchair assessor told me he was the first child she’d worked with that showed such a natural ability to manoeuvre. This was probably because he had a tiny little self-propelling chair, like Firefly’s “Scooot”, that he used every day. It was pretty scary to have a two-year-old in a big wheelchair which could go much faster than I’d have liked! He was a little imp and used to scoot away on me constantly!

Now that he is seven, his OT has offered me her sympathy We received difficult news that Jacob has scoliosis and lordosis of his spine. She said out of all her families, I always come to mind when she thinks of keeping kids in the right position as much as possible. I’m not sure if that was true or she was saying it out of kindness. But it certainly helped my aching heart! It feels very unfair that he is facing this new complication, but that’s life sadly. We are waiting to see what his surgeons want to do. If anything, to help his spine straighten a little which should help him gain back some strength he has lost.

I’m not suggesting it’s a magic cure, but it can’t hurt and will likely help

In the meantime, all we can do is continue to make sure he is well seated in his wheelchair, “GoTo” seat or shower chair. He does sit on the sofa with us because he deserves to have those experiences. But I do make sure he is well positioned and not “flopping” to one side or the other. Looking back, I am so thankful to have had the experiences as a nurse. I was able to understand the importance of preventing further disability wherever possible. I’m not suggesting it’s a magic cure, but it can’t hurt and will likely help. It goes without saying but please ask your child’s team for individualised advice on anything you can do at home to help. Good luck and enjoy that time with your little one(s)!

Mental Health And Special Needs Parenting

World Mental Health Day was on 10th October and it has prompted me to blog about my own experience of mental ill-health. For obvious reasons, it’s a deeply personal subject so I’ll try my best to be as open and honest as possible without being too much.

I was diagnosed with anxiety when my triplets were around six months old. One of the babies has spina bifida and hydrocephalus and I’d just had my worst ever relapse of my Multiple Sclerosis. I just felt totally overwhelmed and remember sitting in front of my doctor and saying “I’m scared for Jacob all the time, I can’t stop worrying I’ll lose him.” He was amazing and gently let me explain how I was just not coping with the demands that were in front of me or the emotional load of having a beautiful little boy with complex health needs. He then told me part of the problem was the fact I was a trained nurse so was always watching for clinical signs when I should be enjoying being a mummy. He also said he’d be more worried if I hadn’t gone to see him. We worked out a management plan together and I felt so much better for it.

In saying that, I think anxiety will always be something I will have to manage instead of something I can be cured of. I’m sure a lot of special needs parents will relate completely to this because it is terrifying to have such love for a little person who may be very unwell at times. Seven years on, I believe my anxiety is better managed but I still take medication for it and I still find certain things will flare it massively such as Jacob (or his siblings!) being unwell. There are some “traits” recognised in people with mental health difficulties that I also experience.

For example, I have what doctors like to call “catastrophic thinking” which basically means if Jacob has a simple cold, I’ll always have a nagging voice telling me I’m missing a shunt blockage/malfunction and he’s going to die. If my MS is bad one day, I’ll always feel that it’s this exact day that I’ll be unable to walk anymore. I sometimes feel that people, even good friends or family, think the absolute worst of me. My rational brain knows all of these things are unlikely, but my anxiety will take a small thing and blow it up massively. I’ve had to learn how to step back and ask myself “Is this possible? Is it true? Could this be anxiety-driven?”.

I also find it hard to switch my brain off. I overthink everything. I forget why I walk into a room at times because of my MS (and possibly having triplets…) but could tell you what I said wrong in a conversation from a decade ago. I’ll worry about what will happen if I can’t stick to a commitment I have made and whether or not I’ll be believed if I’m unwell. Night times are the worst for this resulting in insomnia, which is obviously very unhelpful (everything is worse without sleep isn’t it?!). We have a camera for Jacob’s nocturnal seizures and I end up watching it sometimes just checking he is breathing. It is truly so terrifying.

Apparently, a happy Mum (and/or dad or caregiver) can literally almost “immunise” your kids against mental health challenges by teaching healthy coping mechanisms. We talk a lot about feelings in our house- what they are, why we have them, the fact they are normal and healthy ways to cope with them. Jacob now sees a counsellor himself and as she put it, we all want our kids to grow up in a world where they’d never face any hardships, but that’s just not realistic. So it’s our job to show them HOW to manage in healthy ways when things go wrong. That’s now what I try to teach our kids and what I am constantly trying to practice myself.

4 Ways On How I Do It

I don’t think there will be a parent, especially a special needs parent, who hasn’t heard the phrase “I don’t know how you do it!”. I have. When I was pregnant with our triplets, although then it was generally “oh no, I hope you’ve lots of help!” or other negative comments. I told a lady in marks and spencers I was having triplets once and she literally just stood with her mouth wide open and then walked away in shock. Charming.

So…how do I do it? Here are a few ways.

  1. It takes a village

It is so true what they say about it taking a village. When the babies were born, they spent their first few weeks in a baby unit because they were premature. The nurses, doctors and healthcare assistants became our support since family members (except their Nannys!) weren’t allowed in. As the years have gone on, I got paid support in the form of a “personal assistant” which is a title unworthy of what Natasha and then Debbie did for us. They are both still valued friends. The kids also have a wide family who loves them and my Mum in particular is with us most days to help, especially with the limitations imposed by my MS.

  1. Routine

For us, the routine has been the key from day one. The amazing nurses in the baby unit had the babies on four hourly feeds before we brought them home in an attempt to help us cope. We stuck to that for most of the time we were bottle feeding (breast was NOT best for us) and it worked brilliantly. Even now, when they are nearly seven, we keep them in a pretty set routine. It has changed as the kids’ needs have, but it works for us all to have a routine. I also write things down, especially Jacob’s epilepsy, so I have a “grab and go” pack ready in case routine breaks and he needs to be transferred to the hospital.

  1. I have fewer friends

I remember a time when travelling in a car would have caused Jacob to have a seizure which inevitably needed his rescue medication then possibly an ambulance. Nobody knew why it happened because he wasn’t photosensitive! I wasn’t happy to drive with the kids alone but also wasn’t willing to be away from home by myself because Jacob was just so unwell during that time of his life. I tried to explain this to a group of really cherished friends at one stage and for whatever reason, it was taken in a way I’d not intended at all. Nobody in the situation had any ill intent, but for reasons I still don’t understand, we no longer speak. You will likely lose friends you never thought you would in your journey as a special needs parent, but you’ll also meet so many amazing people.

  1. Me time

I’m in that slightly unbelievable period when the kids are out at school and I have time to myself again during the day! At first, I was quite lost about what to do and felt on constant “alert” in case Jacob took unwell. He has settled into his new class so well though, and with his epilepsy being much more stable I am taking more time to do things I enjoy. My amazing cousin has loaned me her beautiful horse and I am meeting new people through him and enjoying riding again whenever my health allows.

The truth is, you’ll never know how someone else does it because no matter how close you may be, you don’t live their lives. Nobody knows what goes on behind closed doors. So I try to be understanding of others and learn from my mistakes (there have been a LOT!). Mostly though, I just keep moving forwards with my beautiful family!

7 Years of Loving You

Our triplets were born at 32 weeks and 4 days gestation, making them “preemies”. We knew one of our babies would have spina bifida, and possibly hydrocephalus, but didn’t know how affected he’d be until he was born. I vividly remember the team bringing him out of my tummy last (but not least!) and he cried the loudest, despite being a teeny 2lbs 10ozs. That was seven whole years ago now so I thought I’d write about seven things I love about him.

  1. “He’ll never walk”

Yes, that’s a strange one to start with, but stay with me. We were told all sorts of things when I was still pregnant like he was a girl (oops) and the spina bifida wasn’t too bad. It was after his first year that we were told he’d never walk. He is indeed a full-time wheelchair user, but what a lot of people don’t know is Jacob CAN walk. He has a special frame that goes around his body offering him full support, but the ability to move. He calls it his “Hulk Suit”. His orthopaedic surgeon will tell us it’s not “functional walking”, which is true, but it does all our hearts good. He’s also defied the odds and can now control some movement in his quadriceps.

  1. He adapts.

When he was little, Jacob’s newly formed speech regressed completely. We were all taught Makaton, which he took to beautifully. I’ve videos of him singing when he was barely even two years old. He did start speaking again but still uses Makaton since it’s used so freely in his school. It’s amazing!

  1. He has a wicked sense of humour!

We are fairly proud of the fact that Jacob’s humour has developed given all he has faced. He gives epic one-liners and has us all in absolute hysterics! He’s a total showman and loves to be the centre of attention.

  1. He will never give up.

This can be both a quality and a bit of a stumbling block for him at times, although mostly the former! In his seven years, he has had eight surgeries, been in A&E over 50 times, admitted to hospital more times than we can remember, visited an insane amount of medical professionals etc and he still just gets on with things. Of course, it gets to him, but he doesn’t “stay down” long. He’s amazing.

  1. He has developed in ways they said he never would.

Like I’ve said, he has some controlled movement of his quadriceps, but that’s not all. He was given a diagnosis of epilepsy due to epileptic seizures showing up on consecutive EEG tests. He then had a further diagnosis of “non-epileptic seizures” (NES) which were due to his brain being in absolute overload. He had several of these every single day but thanks to supporting from a special school and a great team, he rarely experiences these anymore. His brain was apparently “unreachable” yet he clawed his way back. We are so proud.

  1. He’s amazingly empathetic.

They say people who go through the hardest times will always understand the pain in a different way. I see this in Jacob. He watches his identical twin brother (who’s “healthy”) and sister with nothing but love. If they fall and get a cut, he will want to help look after them. He worries about the boys and girls in his class who are more vulnerable (in his mind) and he worries about me when my Multiple Sclerosis flares. His struggles have taught him to understand other people’s. He recently said to a family member who’d been through a trauma, “I’m so sorry you’re sad”. What insight for a young child!

  1. He has a vivid imagination.

Jacob is one of those children whose teachers will comment “participates actively” in class. Translated: he never stops talking! Jacob tells stories to the point of creating whole other worlds in his head and we have learnt to just go along with him. It seems to be more than coping for him, he enjoys thinking up characters etc. He did once tell a teacher that I “ate coco pops and drank wine at breakfast” though, which wasn’t quite so good (and certainly wasn’t true. The wine anyway…)

Every year with Jacob has brought fresh challenges and heartache, but also an immense amount of pride and joy. I don’t know what we ever did without him in our lives! Happy birthday our little warrior, we truly couldn’t love you, Ben and Chloe, anymore.

“Get Him Assessed”

People, myself included, often ask each other “what do you work as?” or something similar to get to know the other person. I used to say “I’m a specialist Learning Disability Nurse” with great pride, although now I don’t always know how to answer. I worked from graduating (I’ll throw in that I got first class honors because well why not…) until going off on maternity leave with my triplets. For numerous reasons, I have never returned to nursing. I am currently on the emergency covid register in case I can ever help in my area. However, I haven’t worked since my kids were babies!  Despite that, I do still have knowledge of some of the things that challenge our beautiful little boy.

Jacob has numerous conditions that I won’t even bother listing because in all honesty, they aren’t actually even that relevant here. Something that has become more obvious as he has grown, is a shift towards patterns of behaviour that some would say are consistent with children on the autisic spectrum. Why? For a few different reasons like him being sensitive to noises, and textures. He is also quite rigid in his thinking, having stereotypical repetitive behaviours such as hand clapping, and only eating certain foods.

It was decided that he was probably on the spectrum and should be assessed as such.

His neurology team found out that despite three EEG’s that showed clear epileptic activity, some of his seizures were non epileptic in nature. They looked like his epileptic ones, but they simply weren’t. With all the other “signs”, it was decided that he was probably on the spectrum and should be assessed. What did his mum, a trained Learning disability nurse, say to that? No thank you.

The reason I said no was because I don’t feel Jacob being diagnosed with Autism would assist him in any way, at this point in his life. I have absolutely no difficulty admitting he may be on the spectrum. I will never think less of him (or anyone else) for that reason. If I did I’d never have gone into the job I did. In saying that, I already rhyme off a lot of conditions when talking about Jacob to his various professionals. There does come a point that he is lost in the process and overshadowed by his conditions.

I know the things that would be put in place to help him with his behaviours, but we do them at home anyway. So why label him?

I know the things that would be put in place to help him with his behaviours and do them at home anyway. So why label him? His school are aware of my views on this and they agree that while he isn’t formally diagnosed, they treat him as if he is autistic. There are so many amazing people with autism who have inspired me and I would be so proud to say my little boy is one of them. The time to say that just isn’t right now, at this point in his journey. That doesn’t mean I feel less of families who make a different choice in similar situations at all. Thankfully the only person I really have to answer to about this is my son. I am fairly sure he will understand in the future that his stubbornness is from his mama and we’ll wait until it is right for us, not the medical professionals.

The Triplet’s Trip

You know those really cool families from TV / films etc who go on absolutely amazing luxury holidays to far flung countries?! I was not in that family. My family toured Europe in a camper van (also known as an RV, among other things…). I’m still, to this day, ridiculed by my brother for leaving our step at a very remote rest stop when my ONLY job was to remember to lift it into the van before we drove away. Let’s just say my legs became extra nimble on that particular trip!

Joking aside, I’d really not have traded those memories for all the luxury in the world. As a child I just wanted to be outdoors exploring, which is exactly what I was able to do! My brother went on to travel the world to do charitable work which is something I will always be in absolute awe of him for. I however am not someone who likes to travel as a rule, although now I am a mum myself, I’ve become aware of our triplets lack of holidays to this point (they are six). In all honesty, they have only ever stayed under our roof or a hospital.

Why? Well, for one thing, I have Multiple Sclerosis that is exacerbated by heat leaving me fairly useless in warmer climates. One of our triplets also has complex health needs that mean travel is really far from straight forward. Whenever they were younger I was recovering from a fairly intense treatment for my MS which took several years. Jacob then also had numerous spells of poor health which resulted in needing brain surgeries and a lot of time in hospital. The bottom line is our circumstances make it tricky to plan the following week nevermind a family holiday. It was just never a priority if I’m honest!

This year is different though. Last summer was incredibly difficult for us all due to a really bad period of ill health for our wee warrior. I’ll not get into the details, but we all came out feeling traumatised by the experience. Since then we have made a very conscious decision to try our best to get a family holiday together. Because air travel is tricky and warm climates are not ideal, I’m revisiting my own childhood with my three kids! We have been offered the use of our family’s holiday cottage and have readily accepted.

We’ve been thinking about where to stop along the way, what we need to bring, where Jacob can sleep safely, where we can visit that’s accessible, how we can get to the regional children’s neurosurgical unit in an emergency, how to prepare him for the “changes” that week and so on. It’s not easy to plan despite being a “staycation”, although lots of families plan MUCH bigger trips with children of all abilities so I have confidence we can do it. We’re all really excited to make these very precious memories together. Hopefully I’ll do another blog after we are back about what I’ve learnt from the inevitable hiccups along the way!