In Praise of Progress

Surprise! Change can actually be good.

Another school year is in full swing in our household. I now have a fifth and second grader, a kindergartner, and a preschooler. Three of my kids are at the same school, and my special needs son is at a different school that offers the services he requires. This was not my initial choice, but circumstances beyond my control necessitated this decision.

Can I confess that I was so anxious about my son being in a different school than his sisters? We had talked extensively about how great it would be for them all to be in the same place every day, how they would pass each other in the hallway and such. For me, I felt comfort in thinking my son would have a built-in support system in them. He would have at least three advocates among his peers, and this both warmed my heart and eased my worries.

Imagine the disappointment when I realized he would spend his days elsewhere, without his siblings.

Now, the school he attends is a good one; the staff is fully stocked with special education caseworkers, therapists, and paraprofessionals. His teacher is enthusiastic, and his classmates seem very sweet and inclusive-minded. No doubt they’re encouraged to engage with my son by their teachers, which is fantastic.

And yet, my heart sank when I committed to him attending that school. Why? The objective facts – the proximity of the school to home, the dedicated staff, the small class size, etc. – weren’t the problem. My mixed emotions were. I was worried about how he would fit in, I was nervous about him making friends (or even being willing to socialize with his peers, something he’s struggled with in the past.

Maybe I can’t help worrying because I’m his mom. Maybe it’s because I know where his verbal skills have hindered him in this kind of setting. Maybe I’ve set too high a bar for his educators. Maybe I have a hard time seeing him do things independently (meaning, without me).

But maybe I should learn to trust my own kid a little bit more.

When I explained to my son why he’d be attending the other school, he was quiet but listened intently. I told him I was sorry he wouldn’t be with his sisters, but hopefully, he’d recognize some teachers or kids from his preschool class, or make some new friends. I assured him he’d learn lots of interesting things, have help with reading (he wants to learn so badly), and get to eat hot lunch. He grinned so big at that last revelation.

On his first day of school, my stomach was in knots. I dropped him off, spent way too much time explaining what was in his backpack to his para, and watched sadly as he went inside. As soon as I got in the car the tears started falling.

However, on his return later that day, I greeted him at the bus with a smile. I was determined to put a positive spin on whatever difficulty he had encountered. But the strangest, most unexpected thing happened when I asked him how it was. He simply said it was good. The teacher is nice. There is a kid at his table who also likes Batman. He got to have two snacks. And yes, he ate everything offered for hot lunch.

Turns out, there were no difficulties for me to positively spin. There were no rude questions or comments from peers to email the teacher about. My son had a pretty normal, fun day in kindergarten. I felt a little silly for having worried so much. This was a big change for both of us but like my son said, it was good. The change was good.

Disabling the Labels

Do we need to revisit the terms we apply to individuals with physical impairments?

There is a lot of online conversation currently regarding the “proper” labels to affix to our kids’ neurological or physical conditions. Even in typing that sentence, I’m struggling to find completely objective terminology! The debate seemed to start with whether the term “disabled” is still appropriate and acceptable universally, or whether “special needs” ought to replace it. From there, conversations spiral into the introduction of several terms – neurodivergent, additional needs, chromosomally atypical, and on. The concern of parents seems to be two-pronged: which label should be adopted for government services, and which should be used within society at large.

Let’s talk about the term “disabled” and why people prefer it, or not. This term has long been used to describe an individual’s gross motor impairments, whether they are neurologically or physically based. It is the term most used within government agencies (at least in the U.S.) that provide support and services to these people. Some would argue that this term – given its longevity and the general understanding of it by those outside of its scope – should continue to be used universally.

However, many people take offence at the term “disabled” because it implies that, based solely on physical facts, a person is not able to do what others can. Within our community, there is an understanding that this is false; our loved ones born differently are fully functioning and capable in many capacities. So, while their physical attributes might differ from the norm, there is a good reason not to pigeonhole them with a value-laden term.

Now onto “special needs” as the preferred language. Why do many people feel more comfortable with this terminology? For one, it is broader, covering many different types of needs: physical, emotional, social, educational, sensory, etc. The flip side is that if you start with a broad term, it necessitates more explanation. And this will occur nearly every time you use it. Also, many parents object to the word “special” because they feel that, since all humans have imperfections, their children really aren’t special at all. Rather, they are just like any other peer, with varying needs at different times of life. Furthermore, some believe “special needs” has a childlike connotation, and using it in one’s adulthood feels wrong. The final terms being discussed are more scientific: “neurotypical” and “neurodivergent.” But again we run into a problem here, namely that many individuals’ needs are not brain-based in nature, thus negating the universality of the words.

So, essentially, we’re right back where we started. There are no true general terms to describe our community’s population. And in our attempt to find one, we can lose sight of why we’re looking in the first place. What we really desire is for our diverse community to be accepted despite their differences, not because they are easily understood by the labels we attach to them.

Personally, I go into a conversation with a curious stranger with no expectations. They may know little to nothing about the conditions affecting my child, and it is my duty (and pleasure) to educate them. It doesn’t really matter how I choose to explain my son’s physical or social abilities. The important outcome is that my son’s mere presence in the world as someone outside the norm is recognized and normalized.

So, use the terms you want. Don’t get hung up on how they are interpreted by that outside of our community. Don’t get hung up with other parents or caregivers on their preferred terms either. Do keep participating in the world, advocating, and educating. The labels will disable themselves.

What is Universal Design for Learning?

The Universal Design for Learning is where companies, products, and the physical layout can accommodate the widest possible range of people. This would include people with all different types of abilities and learning styles.  This is an important concept for so many reasons.  The first being accessibility. 

The ADA prohibits discrimination against an individual with special needs, the IDEA guarantees children in school a free and appropriate education regardless of their condition, but those regulations are just the beginning of creating a framework where individuals with special needs learn, work, and move throughout their community and workforce where appropriate.

The concept of Universal Design is more inclusive of everyone’s needs because it functions across product design, environmental setup, and being sensitive to small changes that can have a great impact on accessibility to more people.  If it’s good enough for a person with any type of limitation, then it must be good for an able-bodied person.  It’s easier to make modifications that take into consideration a variety of body morphology, motor abilities, and processing skills than to teach an individual to use a system with the skills that they may or may not have. 

In a time where equality is the topic of many discussions, there should be a special push for UDL to be considered in schools, product design, environmental structures, city planning, clothes, and most of all education.  Whether we refer to this as being culturally sensitive, a method for the design of products, or a learning principle instituted in education…the concept of UDL is to construct a model that requires little or no changes in a system but simultaneously affords accessibility to a variety of users. I don’t feel like that’s too much to ask for?!  

As a caretaker of a child with special needs, an educator, or a therapist, you know first hand the challenges that these individuals may face, often on a daily basis. My recommendation would be to get out and change the universe, one design at a time!

Dr Sharon Pediatric Physical Therapist

My Boy Is Growing Up And I’m Not Ready

This week I had a fabulous experience visiting the secondary school that Mr V and I are hoping the Dude will attend next academic year. It’s one of the nicest places I’ve visited, there was a lovely happy vibe throughout the school. Staff and students alike were so happy, there was laughter coming from classrooms, and the whole place had a wonderful calm feel.

Sitting in the sports hall with other prospective parents, listening to the Headteacher explaining about the different classes and activities a thought hit me like a steam train. My tiny baby boy is coming to the end of his time at a school that has been central to all of our lives for almost 8 years, and I’m not ready. In a heartbeat I found myself fighting to control my emotions – you see, my boy’s primary school is rather special. More like a family than a school, its small size means that relationships between families are forged quickly.

The staff love the children as their own and celebrate each achievement alongside us with the same level of joy as if our children had won the Nobel Prize! It is in a large part thanks to this school that our son has developed into the happy, confident and lovely young man that he is…they have worked alongside us where his development is concerned, taking on additional therapies to carry on work that we do at home. And they have calmed him on more ambulance rides across the city than I care to think about as he was raced to the hospital due to seizures or respiratory complications.

I am so not ready for him to move on to the next stage. The Dude however most definitely IS. He is 100% ready, excited to keep learning and ready to meet new friends as well as reconnect with old ones. And the School in question feels like a perfect fit for my inquisitive, intelligent but complex little chap.

And then I looked around at the other parents and realised that each and every one of them was going through the same tsunami of emotions. It’s a big step for any parent and when it comes to our additional needs kids that step feels absolutely enormous. The kids may be ready for this, but the parents may need a bit more reassurance and a lot of strong coffee!

More than Words

One thing I have recently learned in my journey raising a child with disabilities is just how much communication there is without uttering a single word. My daughter Stella is completely non-verbal, but that definitely does not mean she does not have a lot to say.

It was a lot harder in the earlier days trying to understand her wants and needs without the typical ways of expressing them. It was a ton of trial and error that left us both really frustrated. I am not going to lie, there were a lot of tears shed on both of our ends. 

As time passed, I began to become more in tune with what she was trying to express to me. The certain little noises she would make to let me know she was tired or hungry. The sweet little happy coos when she is particularly happy with a situation, which is like music to my ears. The loud burst of squealing laughter when she can not contain her amusement any longer. 

She has become so expressive with her eyes.

Gazing towards things of her interest bright-eyed, or a furrowed brow when she is no longer interested. Heavy slow blinks when she needs rest. Sometimes I feel like we have such in-depth conversations with our eyes alone. 

We are working on new avenues of helping her communicate on a more specific level. We have been working with adapted buttons that allow her to express when she wants more of something or when she is done. We are also working with an eye gaze device. She can use her eyes to move the mouse to play games, music, and pick out shapes and colours. The end goal is to be able to use her eyes to communicate further and allow the device to be her voice. 

Another thing we have been working on is allowing Stella to communicate choices.

Through therapy, her motor planning has greatly improved, so she is more able to reach towards things she is interested in. I always want her to be able to have opportunities to express herself and make her own decisions. I have been trying to make more of a habit of allowing her to pick between things such as toys or clothing.

It’s important to remember that people that can’t communicate in a traditional sense still have a prerogative about things. Anybody that knows Stella can tell you that she is a very opinionated little girl. Sometimes the issue is not as much of them not speaking as it is people not truly listening.

A Life of Logistics and Anxiety

I am an introvert. It may not look this way from reading my blogs, speaking to me on social media, or indeed even in person. But the truth is I mask a lot of my anxiety, or I let it come out in my writing.

I need a lot of time to be introspective. I don’t deal well in crowds. I stumble on my words and don’t know what to say when meeting new people. I find comfort in podcasts, music and books… not nightclubs, parties or anywhere that is generally busy. I love being home. Being home now is more than just about comfort – it’s where all of the equipment is that we need for Amy that keeps her safe and allows us to transfer her with ease. Any trip out we take is adding risk because we just don’t know what to expect from the world in terms of accessibility. Things have to be more carefully planned now.

Over the last 7 years, I have really been pushed out of my comfort zone. This week alone I have met at least 30 people I have never met before. We had a two-day stay at a hospice we have never been to, we’ve had meetings at our house about different aspects of Amy’s life, and we’ve had an afternoon at the hospital for medical tests.

My mind right now feels cloudy. I feel a bit emotionally and physically drained. I have this annoying tendency to ramble, focus on negatives, or overshare. It’s completely inadvertent and afterwards, I am left feeling silly and angry with myself. This will then trigger my overthinking and add to my insomnia. Sometimes living in your own mind is hard. I catastrophize constantly; imagining the worst-case scenario so vividly that it almost seems like a very real inevitability.

Yesterday we had an appointment at the city hospital. Coronavirus rulings have made it so that a lot of our appointments mean only one adult is allowed to attend. I often take someone else with Amy and I just so that I can concentrate on what people are asking/telling me, for extra hands for physical help with Amy, but also for moral support so I feel that I can handle everything.

When we have any upcoming appointments I obsess over it for days. I envisage the journey there, how we will park, what we need to take, how long it will take, what I need to ask/ensure happens. I account for almost every possibility. I pack copious amounts of things… you know, just in case. I then worry that I haven’t packed the right things or got the right day. I then beat myself up wondering why I am getting so het up over a simple appointment. Something we have done so many times before and will do so many times again.

Recently my anxiety has upped itself a bit. I get nervous at every phone call or email. For some reason, we’ve had a lot of disappointing news this year and now I associate people contacting me with something bad happening. So I have started to do more guided meditation, and try to breathe more and think before emotionally reacting. In theory, it all sounds amazing, but the reality is very different. We have had so much going on recently in all aspects of Amy’s life. We’ve had so many appointments, SALT, OTs, physio, neurology, dieticians, gastro, epilepsy specialists, housing, hospice/respite processes etc. For anyone, it’s a lot to take in and each area carries its own pressures and expectations. Sometimes I just want to be mum, I don’t want to need this constant barrage of appointments and calls. How Amy takes it in her stride so well I will never know. All we needed yesterday were routine bloods and a urine sample from Amy. Sounds simple right? It isn’t life or death, but these things are still important.

The trip to the city hospital is tough in rush hour, and parking can be a nightmare. I had of course accounted for this and arrived at Amy’s school earlier than necessary to pick her up. So I decided to sit in my car for a few minutes to try and regulate my nerves. Initially, I turned the air-con up in the car to cool me down as I was a bit hot with anxious energy. I then decided to send an important email I had been meaning to send relating to Amy’s recent increase in seizure activity. 

Just as I felt myself begin to feel organised and calm, there was a knock on the window. “Can you turn your engine off please. You are polluting the environment and my windows are open”. The lady had just parked her car on her drive and came to tell me off. I can’t stand confrontation and was too shocked to properly respond. I couldn’t believe I was sitting minding my own business and now being told what to do by a perfect stranger. Cars constantly park by my house making loud phone calls etc and I wouldn’t even dream of telling them off! It’s their life, their choice. I have bigger problems in life than someone else’s cars. I explained what I was doing and she actually apologised and walked away. But by this point, my anxiety had soared again. (I have since found out you actually aren’t legally allowed to sit with your engine on in a stationary car, but the point is neither here nor there; the point is let people be… stop focusing so much on what others are doing and go and live your own life. Obviously, I do care about the environment, but much of our life involves calls and emails about medical issues and on this occasion, I felt what I was doing was justified.

Feeling flustered and unable to shake my anxiety, we made it to the city hospital in good timing. I tried not to notice the two cars next to me without disabled/blue badges in the disabled bays (waste of emotional resources) and we ventured up to the ward. Straight away I was expected to lift my child to get her height and weight. I was expected to lift her again to put gauze in the pad for the urine sample. In total for the appointment, we did about 5 transfers, all whilst leaning down onto a very low changing table.

I asked why we weren’t using the hoist. Apparently, even though it got serviced, it isn’t working. I explained that sorry this isn’t good enough and that my child is only getting bigger. I have been told more times than I care to remember to look after my back. How can I do that when a city hospital… specialising in complex health and disabilities, can’t even meet the most basic needs for families like ours? Admittedly their outpatient’s dept does have a hoist but this was an entirely different space, one where children with mobility needs are expected to go in and out of their chairs regularly. Obtaining urine is always tricky. I tried giving Amy so much extra water. We waited almost an hour and went to check. Not even a drop.

The staff said maybe I’ll have to just try and get it at home and drop it off. I burst (unexpectedly) into tears. There is no “popping in” anywhere in our life now. Everything is carefully planned. There are many factors to consider before even leaving the house. It’s almost as if the stars have to be aligned to allow a trip even to the supermarket at times. I have to consider accessibility, Amy’s health, my anxiety and energy levels, appointment clashes and many other things. We never just “pop out”. We are not in the days of grab your phone, purse and keys and off you go. There is much more to it than that.

People don’t realise just how much stress and energy was used up in trying to get us to this appointment. When you have anxiety, sometimes the most simple things are made difficult. I know it’s irrational, but sadly that’s how it is. I said no, we need to do this now. My back is so sore, and I don’t want to have to keep coming back. So we waited another hour. Lifted her onto the bed again. She had somehow managed to wee around the gauze and into the pad!! Exasperated, I admitted defeat but explained I wouldn’t be returning until we have a longer clinic appointment and we are downstairs where the hoist is and have more time. I do get emotional and frustrated when Amy’s physical needs aren’t being met. It makes me wish we never left the house. We have what we need to do a safe transfer here. 

When I cried I saw the staff look surprised as if to say “why are you crying?!”. In retrospect, I do feel a bit ashamed. But it was all that pent up stress about having to once again poke her with needles and interventions, knowing she may not understand why we are doing it. She was missing more school time, we had a journey back in rush hour ahead of us, I had no one to help me physically or to help keep me calm.

Sometimes those tears come at the most inconvenient time. Sometimes the weight of it all takes its toll. Every day we deal with serious things such as seizures, housing adaptation issues, concerning gastro problems, respiratory illnesses requiring lots of intervention etc. So every now and then, a lady complaining about my car, or an unsuccessful urine test is enough to tip you over the edge.

So if crying over spilled milk has reduced you to pitiful tears and wanting to curl up in a ball under a blanket today… you are not alone. You can do this. Have a cry, have a nice drink, and get back to it.

Emotional and Physical Exhaustion and Complex Health Needs Parenting

I am tired. I know I sound like a broken record. I even just looked up the word “tired” in a thesaurus to see if there was a more jaunty, fun way to say it. “Dead on one’s foot” amused me, and seemed quite apt.

There are different types of tiredness. Or at least I think there is.

There is the residual daily tiredness that is felt from multiple nights of broken sleep. Be that from your child having neurological issues that mean sleep is a random and infrequent event. Be it the alarming of the feeding pump or the need to reposition your child. There are many reasons that every night is an eventful one in our house. It’s that exhausted, heavy limbed ache in the morning that you feel when you know that it’s time to get up.

But there is the other tiredness I am feeling. The tiredness that no amount of sleep can fix.

It’s the tiredness you feel from the constant fight. I don’t want to fight. 

I dearly wish that when I speak out and ask for help, or request something, that it is listened to. No lip service, no promises of returned calls, no apologies, no excuses (cough, covid, cough, funding). If I ask for something, you can rest assured that I have agonised and ruminated over this request for some time. I have considered every option – is there a way we can do this by ourselves? Do we need this… now? Be it help when in hospital, adaptations, renovations, equipment, medicine. So often the staffing, funding, resources, provision – whatever it is – it isn’t there. Each email or call is met with panicked dread. Is it more rejection? Is it more forms to fill-in? There are days where I feel like I can’t take one more bad piece of news. 

The other day I treated myself to a nap whilst Amy was in school. When I awoke I was met with a huge pile of feeding supply boxes outside, a 76-page renewal form for Amy’s DLA, a confusing email about the future of our respite service, and an email to say one of our carers had been cancelled for that afternoon. I honestly just wanted to crawl back into bed and pretend none of this had happened. I had hoped to wake from the nap caught up on sleep and dare I say it, refreshed. But straight away the tension headache appeared. My head was pounding, my heart had palpitations and I felt shaky. Do I counter any of these things? Do I have the emotional energy to handle this right now? Or maybe I am overreacting and need to learn to cope better? So I set off on a journey of self-sabotage. I tell myself I don’t cope well enough. I tell myself I am not strong enough. I tell myself I’m not a good mum. I feel guilty for feeling so many emotions. I had been happy that morning, and now my mood had taken a nosedive. These extreme fluctuations in mood are tiring in themselves.

One type of tiredness seeps into the other. Together they are a deadly combination. The mix of no actual proper sleep affects your mood, metabolism, brain chemistry, your physical and mental health can become compromised. Your immune system takes a bash. Each common cold lingers for far longer than it should. Your body has no choice but to fight. This physical tiredness makes the fight harder. The effects of the fight are intensified. 

I’m not sure what happens when the emotional and physical energy resources are depleted. I was told recently that I seemed indignant and resigned. I think it was an involuntary act of self-preservation. I hadn’t actively noticed this about myself until it was pointed out. I was barely reacting, to anything. I just didn’t have it in me. When Amy was ambulanced last week I barely even reacted. It wasn’t because I didn’t care. It was because I cared so much that my body couldn’t keep up. I responded and arrived at the scene as quick as I could and held her assuring it would be okay. I felt relieved she was stable, but I felt equal parts emotionally hollow, and emotionally explosive. All I cared about was getting her better, getting away from this awful place, and trying to prevent it from happening the next time. I didn’t get that usual feeling of fear and panic, I felt almost a sense of routine about it.

Distressing as it is having your child escorted to hospital by paramedics, it’s happened to us more times than I care to remember. Falling to pieces doesn’t help the situation. It isn’t good for, myself, or those around me. Becoming emotionally numb at times is a strength and takes more energy than you would think. Suppressing the urge to break down and cry “why us, why her?”, blocking that surge of adrenaline, forcing down those cortisol levels and putting up those barriers. Trying to keep your patience when asked things like “does she need that hospital bed?” (no, we have it for pure lols?! We love to inconvenience ourselves for sheer banter). Trying not to scream when told “only one parent allowed” when your child has complex health needs and the rest of the world has moved on from covid. Trying not to laugh sarcastically when told that you as the parent as classed as the child’s “visitor” when you had been responsible for drawing every med, giving every neb and so on. Trying to remain composed at people thinking just me on my own is sufficient when her health is in crisis, and yet it takes two professionals to care for her. Ignoring hypocrisy and wild rules is a real challenge.

Please note that this is not written for sympathy, or to be told what a great job I’m doing. I know I’m doing a great job, and I don’t need sympathy necessarily. My intention here is to reach out to those in similar positions who currently don’t feel heard. They feel forgotten, unappreciated, isolated, unsupported, and a whole range of other feelings. We must talk about it and share experiences and root for each other.

They say to look after yourself otherwise how can you look after someone else. You can’t drink from an empty cup. In an emergency, apply your oxygen mask first. If you don’t make time for your wellness, you will make time for your illness. People relay all the cliches to me daily. But I am left wondering – why are so many families being failed then if we need this help so much?

Right now I am not sure of the solution. I think we have to take each day as it comes. Celebrate any small wins, and hope for tomorrow to be a brighter day. Try to fit in sleep where you can, try not to become too attached to plans as they can be cancelled at the drop of a hat. Try to manage expectations. Most importantly – be kind to yourself.

I see so many families like ours feeling the same. My heart goes out to them. I see their struggles and wish things could be easier. I wish them all the sleep they need, all the support they need, I wish them fewer obstacles, fewer red flags, less rejection, no hospital admissions. We recently had another hospital admission. Now that Amy is better she is so lucid and happy. She has been so sociable and lovely. Her learning is better now she feels right. She is thriving in many senses. She had an amazing parents evening review. I am bursting with love and pride for our girl. She is (and her dad too) truly the glimmering beacon of light amidst the rest of the chaos that can be our lives at times. I have to enjoy these times all I can because as they say, Winter is coming.

Our First Trip to the Hospice

Trigger warning: Mentioning of death, end of life, palliative care. Though intended to be a positive and happy post, I understand that some of the subject matter may be triggering for some. I appreciate this is a sensitive topic, however I feel it is an important one to discuss and may resonate with others in a similar position to ourselves.

A hospice. What does the word hospice mean to you?

Prior to having Amy I think I only had negative associations with the word. You don’t want to need a hospice. A hospice meant dying, death, illness, or even missing out on the “real world”. And I suppose to a degree that’s all still correct. 

Being plunged into the world that we are in has forced me to reassess what I previously thought about so many things. I had been grateful that a hospice wasn’t something I thought we would need. I had assumed that you only went there is gravely unwell (and still, this is the case for many, and I hope not the case for us in the future but a very real possibility that I try not to think about).

When Amy was born extremely unwell, we were taken to one side by a doctor and advised that she may not make it through the night. Still in complete shock and still dosed up on strong painkillers from the emergency c section, it was all a confusing haze. It was inconceivable to me that she may not survive, she had been perfectly “healthy” and well up until I went into labour, after all.

The doctor mentioned to us a “rainbow room” at a local hospice that they were considering she would need to be transferred to so that she could pass away peacefully in a less hospitalised setting. (The rainbow rooms are rooms kept at a cooler temperature so that the person can remain at the hospice until funeral arrangements are made. It is also for families to be close together in a homely environment surrounded by support).

Discussions were made about if she were unable to come off the ventilator. It pains me also to say that the doctor said if she did survive she would be a “vegetable”. It still sickens me to this day that someone could describe any living person as a vegetable. I understand that the doctor was giving us a worst case prognosis and trying to manage our expectations realistically, but to me, you can never presume someone’s level of cognition and no matter the severity of a disability we are all human and all deserve compassion, love and life.

My heart goes out constantly to those around us who have had to go through the journey of loss with their child. I think about them and their children daily. I cannot begin to comprehend how that feels. As I have been writing this blog I have shed a few tears in memory of those we know that have had to make those hard decisions, or indeed had those decisions taken from them. It shows why hospices are needed, and why we need to help these charities as much as we can.

Fast forward seven years and we have a lively, active, thriving child. Yes there are many challenges she faces daily, yes her condition is at times life threatening. We don’t know life expectancy. We take each day as it comes. But since those days, for 6 years at least, I had closed my mind to the idea of a hospice. To me it was something to be avoided at all costs until talks of end of life start to emerge. 

I was wrong. The definition online for a hospice is “providing care for the sick or terminally ill”. But I think in reality it is so much more than that. It is providing all members of a family with emotional and physical support. It is creating valuable memories, experiencing new things, meeting new people. It’s about allowing everyone to recuperate in a positive, warm and welcoming environment. Yes, there is bereavement support, palliative care, loss. I am not here to sugarcoat the reality, but to explain that there is more to all of this than you may initially think.

We were referred to the hospice when I was struggling with carer burnout. The respite package we had at the time was great, but the lack of sleep at night and the tough winter we had experienced had rendered me no use. I worry constantly about burn out… which is ironic. I worry about not having the strength or ability to be what Amy needs me to be, and indeed the rest of those around me that I care about. It was something we considered deeply. Did we want this? Did we really qualify? I didn’t really like that we qualified for something that sounded so severe. Our little girl shouldn’t be entitled to these things. It felt unfair. 

She doesn’t go to the hospice because she is currently very poorly. She goes as a place to be independent from her parents and be pampered and nurtured. It allows us as parent carers to have a much needed rest knowing that our precious child is in safe hands. 

The first thing I will tell you about the hospice we stayed at is that everyone is SO friendly. We had the warmest welcome from everyone we met. Amy continually gave what we call her “royal wave” to everyone we met. We stayed for two nights. Amy had her own bedroom and we stayed in one of the flats for the parents to stay in. In future visits we will be able to stay at home whilst Amy stays there. The hospice is a home from home. Yes a lot of medical stuff happens here, just like it does in our own home. But it isn’t medicalised. It isn’t clinical. It is clean and practical, but without being like a hospital. There are nurses, and sometimes doctors, but there are swings, toys, soft furnishings and more.

The coronavirus has meant that our local respite centre still isn’t open. By this point we hadn’t had any overnight help for at least 18 months. Amy’s sleep at times can be bordering on non-existent. The prospect of a full nights’ sleep sounded too good to be true!

On the first night, we spent a few hours signing in all of Amys’ meds, going over her care plan, checking if the bed was safe for her and so on. Packing had taken me a few hours and I was worried I would forget something vital. I checked and rechecked labels on everything, wrote lists, triple checked.

I felt a nervous twinge in my stomach. At her usual respite centre they have known her for almost 7 years. These people are all new to us. What if she’s scared? What if something bad happens like a seizure or aspiration? What if they struggle making up her keto feed? No one else has ever made it other than me. The parent guilt set in. So often we crave a break, and when that break comes we are riddled with anxiety and guilt. I need her as much as she needs me. We kissed her goodnight and treated ourselves to a meal out locally. 

It was our first meal together as a couple in almost two years. It was strange when we left, walking in the dark. We don’t really experience the dark. We stay home and watch TV most nights! Usually our attempts at a meal out involve a loud ipad, Amy becoming agitated as she doesn’t like being in one place for too long, and indigestion from eating quickly so that we can leave! We sometimes joke at how us oral eaters are inefficient.. Amy being tube fed makes her much better at multitasking and she has more important things to do that eat!

During Amy’s stay she had two school friends with her who  happened to be there at the same time. There are always different people mulling around and she loved watching them and meeting them… she’s very inquisitive!

She enjoyed the sensory room with its lights and projectors. She listened to music, watched TV (a huge one in her bedroom!), went for a walk, enjoyed the beautiful gardens, and most importantly – a bath! We don’t have a bath at home. It’s one of my biggest wishes for her. The bath had jets, bubbles and lights. I had made sure to send in bath bombs and bubble bath so she could feel truly pampered and enjoy a sensory treat. We met her downstairs after her baths and she smelt amazing, looked refreshed, and was full of smiles when greeting us. Her athetoid movements were notably calmer from the warm relaxing nature of the bath. It was beautiful to see. This is why we deserve to go to the hospice. So my child can be as pain free as possible, pampered, and cared for whilst we regain some energy so that we can continue to be what she needs when we are at home.

I now can’t wait for her next stay, and I bet she can’t either. 

Thank you everyone at Francis House hospice for making our first stay so wonderful. 

Thank you to those in our community that helped me to see that this will be a positive and valuable part of our lives going forward.

Anything but ‘Accessible’

There is a big issue in the holiday market. It’s something most people wouldn’t think twice about but for families like mine, it’s the first thing we check. How accessible is a property? We can look at photos but wide-angle lenses and clever photography can change perspectives so can’t be relied upon accurately; we can call the owner/ agent and ask if a property is suitable for disabled individuals/wheelchair users but we’re very much reliant on their understanding of the issues we face; and finally, there’s the listing itself. If a property is advertised as ‘accessible accommodation, what exactly does that mean?

The problem is that there is no official definition in law of what ‘accessible’ actually means.

We are, through necessity, very well equipped to manage most things when we go away. Portable ramps, mobile hoists, etc do make life considerably easier when away from home and the large amount of equipment that the Dude uses daily, however, we still have to rely heavily on property owners and agents to accurately list their properties when it comes to how accessible they are. Most people are aware that steps and wheelchairs are not a good combination (you would be astonished how many ‘wheelchair friendly’ properties we have encountered that have stepped up to the front door), but not as many are aware of more subtle issues like turning circles, door widths and so on.

Surely, this needs to change? While you cannot possibly cover all eventualities there are basic things that apply to any accommodation in order for it to be deemed accessible – no steps, doorways wide enough to pass a wheelchair through, no tight corners or narrow corridors come to mind. Good lighting, non-cluttered rooms. Bathrooms and toilets with grab rails and enough room to allow someone to use the facilities safely. In an ideal world, hoists and changing place-type facilities would be available at all holiday-let accommodation but let’s be realistic here – the average person with a holiday let is unlikely to go that far unless they have experience of the issues families like mine face daily.

In my experience, most property owners are lovely and do all they can to help. Isn’t it time that they had a bit more guidance too so everyone can be confident in the accuracy of the descriptions?