Making a Way

My son is eight years old. He has the best personality. He loves connecting with people and being involved in the conversations and activities happening nearby. He is non-verbal and using his eye-gaze communication device, he is one of the most talkative people around. One of the areas he excels in when it comes to speaking up is self-advocacy. He wants to be included, he knows he deserves to be included, and he will make this information known.

Recently, we encountered a situation where my other children had been included in an activity by an adult but my eight-year old had been left out. Although I was tempted to immediately intervene, I decided to step back a bit and see what would come of my son speaking up for himself. He began speaking about the activity, obviously ready to be included. When that was ignored, he moved to his self-advocacy page in his device and began to say “Please include me” repeatedly. When that, too, was ignored he added “that was not polite” in between the “Please include me.”

When even that level of speaking up for himself was utterly ignored, he turned the volume of his device to loud and continued saying the same phrases.

Nothing. At this point, I had enough, intervened, and took a more aggressive approach to requesting that he not be left out. The adult leading the activity made a comment that really caught me off guard. He said “I would have included him but there just really wasn’t a good way to do that” and went on to explain how difficult it would have been to include my son. The thing is, it wouldn’t have been hard. It would have taken very simple adapting.

This incident caused me to reflect on the different ways people choose or choose not to include my multiple children who have disabilities. My son did a lovely job advocating for himself. The fact that he was not included had nothing to do with son and everything to do with resistance to include (or perhaps ignorance and resistance to learn) on the adult’s part and an unwillingness to be seemingly inconvenienced.

Inclusion is always possible. Is it always easy? Maybe not. Does it always look how we thought it would? No.  But I do believe it’s simpler than many people perceive. I have attempted to imagine something my children couldn’t be included in, in any capacity, due to their disabilities, and I cannot. There is never an excuse for excluding a person because of one person’s disability and or another’s own unwillingness.

If someone doesn’t know how to include, they should ask.

If they are unsure if a child is wanting to be included, they can ask the child. This concept is a simple one even to children. My own children have a keen sense of inclusivity. In fact, we have had to start working on learning that it’s ok to *not* include children on the playground who don’t want to be included rather than force them into the play taking place. If my young children can understand that humans ache to be connected and included, so can others.

I am weary of having to fight for inclusion and watch my children face the threat of being left out. Those who love my children well stand out because they are the ones who do whatever it takes to include every single one of them. Most importantly, they are willing to ask when they are unsure about how to include and in turn, accept guidance on how to improve.

Inclusion doesn’t have to be perfect and even acknowledging the person’s desire to be included goes a long way. While I fight for inclusion for my children and family every day of the week, there are some situations I will no longer battle against: I will no longer fight for my inclusion or my family’s inclusion within circles that are wholly unwilling to include my children—every single one of them.

People matter. Therefore, inclusion matters. Adaption matters. Effort matters. Excuses don’t. It’s ok not to know. It’s not ok not to learn. There is always, always a way. The key is understanding that we don’t always find a way to include and adapt. Rather, we have the privilege of *making* the way.

When Every Achievement means the World

It isn’t an exaggeration to say that the last year has been unbelievably difficult for my little man. Home schooling aside (my thoughts on this are well documented!!), periods of illness have kept him in hospital and out of school far more than anyone would have wanted, plus the joys of shielding for a large part of the year have meant that he’s missed his friends, he’s missed the social aspect of school and has missed precious time with his beloved Grandparents.

So, as the last week of the school term began and we inched towards the end of the academic year it was an excited Sam who went of to school ready to enjoy the events planned with his friends to mark the end of what has got to be the most unusual of years. As his Mum, seeing him chatting away happily to his taxi driver Dave and passenger assistant Mandy and seeing how much they obviously adore him is just the best feeling. But today is a Big Day for our boy as it is the Horton Lodge Awards day. Aka, The Oscars.

The UK weather has actually obliged for once – with glorious sunshine, allowing the planned outdoors event to happen!

Far, far more exciting than the Hollywood version, The Horton Lodge Oscars is the event of the year. Thanks to covid, the event was cancelled last year (boooooo), but thanks to the creativity and immense efforts of both staff and students the 2021 Oscars looks set to be one of the best ever. AND the UK weather has actually obliged for once – with glorious sunshine, allowing the planned outdoors event to happen!

When you are celebrating the achievements of children with multiple, complex and often life-limiting conditions, there is no such thing as a small success. Every single achievement is massive not only for the child, but for their entire support network; the staff who work with them daily, the therapists who see beyond current issues to what is possible, the parents who never stop believing in miracles and all the other family and friends who keep cheerleading and supporting. Its always a deeply emotional event and this year was more so than usual having come so very close to losing Sam earlier in the year. I am not ashamed to admit that I did not hold it together when my little boy was announced as the recipient of the school’s Endeavour Award for his determination and courage this year – I was fine right up to the point that he was presented with his award and his little face just broke into a huge smile, and he excitedly kept showing his TA his certificate.. and at that point I cracked. This child has been through more in a year than most adults experience in a lifetime; and he has emerged stronger, happier and more awesome than ever. He humbles me with his determination on a daily basis and has achieved so much this year in defiance of the pandemic. Any achievement is worth celebrating, regardless of the individual; heres to a lovely, restful summer!

Married with Special Needs Children

Marriage is hard. It is one of the hardest things I have done but it is also one of the greatest. We have the challenge of raising two beautiful children but each have their own set of special needs. Sawyer requires nightly meds, a constant watchful eye and g-tube feeds. Those are the minimum. If it’s too hot he doesn’t like to be outside so we end up one inside and one outside with his sister. If it’s too hot we can’t go on a family walk. There are times he isn’t feeling well so one person has been up most of the night.

It’s incredibly hard to find time to ourselves, left alone together. We try to get out for a date night every few months but during the pandemic, forget it. It’s incredibly hard to find someone who can watch Sawyer. His seizures aren’t easy to detect (unless you know him well) and they require a quick response with rescue meds a 911 call and an ambulance ride.

We have learned to adapt. We have hired an evening nurse for a few nights a week and we try to find a sitter for his twin sister so we can get out and at least have dinner. It’s been helpful to get some time to ourselves. When you become parents you lose a little piece of who you were as a couple. You forget how to flirt, how to be a couple without kids.

My challenge to you this month is to carve out once a week where you watch a show together, play a game, go on a walk, or cook dinner together. Talk about things OTHER than the kids.

Marriage is hard but it’s work and i’ts work that is worth it. As a couple you can be a stronger unit when you have a stronger bond. Focus on each other at least a few times a month. Put the phones down and spend quality time. You won’t regret it.

Making the Right Choice

In the TV advert for car company ‘Cinch’, Rylan Clark-Neal advises ‘Mandy’ to make sure she’s made the right choice, before adding, knowingly, “Because sometimes we don’t, do we.” We can all make wrong choices in all sorts of ways. I have and I’m sure you can think of occasions when you have too.

What about wrong choices in the words that we use, especially words that might relate to additional needs or disability?

It’s about the lexicon of words and phrases that we can commonly use but which can be so toxic for people with additional needs or disabilities, and their families. My thanks to Canadian film maker, actor, and TV host @nicolestamp for recently getting me thinking more about this.

Here are a few examples of things we can commonly say but shouldn’t; along with some more appropriate alternatives to use instead:

Don’t say                                                                                  Examples to say instead

“I turned a blind eye to that.” (also “deaf ear”)                        “I chose to ignore that.”

“They are crippled by debt.”                                                             “They are struggling with debt.”

“That’s lame.” (not a common UK phrase, but increasing)     “That’s awkward/not cool.”

“That is insane/crazy.”                                                                        “That is wild/chaotic.”

“That is dumb.”                                                                                     “That is foolish.”

“A little bit OCD.”                                                                                 “Very organised/hygienic.”

“A little bit Autistic.” (used in many different contexts)           No alternative, just don’t say it!

I’m sure you can think of many that I’ve missed. Let’s treat negative disability metaphors in the same way that we would treat negative gender, racial, or cultural metaphors. For example, these phrases should disappear from our language, they have no place there. However, this will only happen if we make a conscious effort to do so. Let’s make our language inclusive and remove the toxic phrases that can reinforce negative stereotypes and cause so much hurt.

If you want to explore this topic in more depth, here is a link to a helpful article by Sara Nović on the BBC website:

So, let’s cut out the negative disability metaphors and change our language for the better. As Rylan knowingly puts it, let’s “make sure we make the right choice, because sometimes we don’t, do we?”


Paperwork, Admin and Proving Your Need

Do you ever have one of those days that just flies by from all the paperwork and admin you have to do? (Yes cez, everyday is one of those days) – I hear ya. I recently had a morning at the computer ordering prescriptions, ordering feeding supplies, ordering keto feed ingredients and so on. I was slowly working my way through the list thinking how much better I’ll feel when it’s all complete. Then suddenly an email comes through.

Time to renew the blue badge. My heart sank a bit. I remember last time rifling through documents for proof of benefits and birth certificates etc. I really didn’t want to do it on top of all the other jobs but I knew it’d be a great job to have over and done with. So I went about the task diligently and calmly. I filled out all of the form, paid the money, and scanned the documents. Sent it off. Done. Let’s have a coffee.

Fast forward a few days and I get an email (not an automated one this time) explaining it was accepted and processed. In my half asleep state I only skim read the email and responded with a “thank you for your help”. Later on that day, I read the email again and to my shock noticed they could only approve it until February next year. Their reasoning was that we would be due to renew Amy’s high rate disability claim. I was astounded. I am frustrated that in 6 months time I’ll have to go through that whole process again, pay the money again and then in addition to this fill out a 70 something page document so that we can continue to receive Amy’s DLA. 

Sometimes the lack of common sense surrounding these claims is outrageous to me. Amy’s disability is severe and lifelong. It will stay the same, or things will get worse. I know that in the early days of her diagnosis you don’t always know what the future holds. There is a chance that with some children they will eventually learn to eat orally, or perhaps take steps etc. But for us we learned relatively early on that Amy would be significantly impaired in terms of mobility. I also knew that tube feeding would always be happening even if she learnt to eat a little orally. 

To me in severe circumstances, these things should be approved indefinitely. Why put us through the pain of endless paperwork and calls proving we need what we need? I am yet to read of someone’s cerebral palsy disappearing as if by magic.

So I did what I usually do when frustrated. I wrote a little rant on Facebook.

I was surprised by the variety of different outcomes people have had in similar circumstances. Some people get theirs approved for several years. Some have had to apply twice in a year. Some have been denied (wrongfully) and had to go to tribunals. There seems to be a huge lack of consistency and a disparity between treatment from one family to the next. I totally understand that those making the decisions need to ensure no foul play. They need to be certain that people aren’t “playing the system”. But it really should be reviewed case by case.

I am told regularly to focus on Amy’s abilities and I accept and wholly love her for who she is. I find it quite damaging being forced to put pen to paper and paint the picture of the darkest days. When you put “non verbal, non mobile, tube fed, dystonia, athetosis, asthma” and so on, I feel this should only get put once and that be it forever. Unless by some strange twist of fate she wakes one day with a fully recovered brain, things should just be left as they are. The system doesn’t seem designed to be user friendly, efficient and helpful. It seems to throw out obstacles, challenges and at times mistrusts us. It rarely feels that we are being worked WITH.

I don’t understand why we must continually have to prove why we need what we need.

I don’t like asking for things. I don’t like needing help. So if we are asking for it – it’s because we need it. This isn’t just for the blue badge situation, it’s across the board in so many areas of our lives now.

I am sometimes saddened when I see our friends in America get declined by their insurance company for a piece of equipment they didn’t want their child to need. I have seen people be declined for standing frames – something that we have had since Amy was 9 months old. I’ve seen people be declined a wheelchair even though their child can’t walk. We got our first wheelchair when Amy was 2. People are asked to prove their need, gather evidence, demonstrate the need, get letters from professionals agreeing to the need – to still be declined!!

These rejections add up. They can make or break you.

Either you get so fed up with fighting that you resign yourself to whatever fate they decide for you. Or you don’t take no for an answer because your child deserves the best (at least the bare minimum!!). I vacillate wildly between the two several times a day, everyday. Let me tell you, maintaining the physical and emotional energy to battle this day in and day out is exhausting. It depletes you of resources and can leave you floundering. It can leave you awake all night and wanting to sleep all day. It can mess with every fibre of your being.

So often the reason for it all is money. Some days I am campaigning for better accessible play equipment at parks and changing places to be installed at more venues. Other days I am wallowing, wishing I had the energy to prove why we need whatever is needed next. So much of my time is dedicated to either getting through the day, or how to make the next day better for all of us. Right now I am neglecting prepping tomorrows’ feed batch and meds. Everyday there are a multitude of calls I am putting off, tasks I am procrastinating on, errands I am shirking; all so I can achieve the bare minimum without wanting to go to bed before the last feed of the day is finished. 

I have been trying recently to become more healthy. I have gained so much weight over the last 7 years. I worry about my witness, and not living well enough to care properly for everyone. I have cut down hugely on carbs and snacks. I am trying to lower adrenaline and cortisol levels with reading, funny/interesting podcasts, blogging, getting into nature, and walking. I am trying every avenue I can to remain positive and become less short tempered. Often I slowly start to regain energy and optimism and then something will happen that will plunge me back into reality and force me to fight against my anger, anxiety and frustration. It’s a constant battle. I sometimes worry I am putting too much pressure on myself and need to take a step back and reflect. I realise that anyone else in my situation I’d be telling them how proud I am of them and to keep going – and yet to myself I berate myself and wish I could be calmer, more mellow, more patient, slimmer, everything. I can’t undo 7 years of bad food choices in 1 day. I can’t change how our entire system works so that it makes sense. I can only do what I can do. One step at a time. One form at a time.

Every night as I switch the feed over to an overnight water feed, I look at my beautiful daughter (pften awake, the sneak!) and am reminded of why we do this. That she is worth every bit of it. Her and her dad are everything to me. I have so much to be grateful for. It’s easy to lose sight of what’s important when life is passing you by so quickly. So many different things demanding your time and energy. Sometimes, you need to stop, take a deep breathe, remember why we are doing this and to enjoy the moment, however fleeting those calm, quiet moments may be.

We will get there. Just keep going.

When People who “Get Us” Come and Go

People are transient. Through our life with Amy I have made probably more connections in the last 7 years than I had made in my entire life prior to that. I can’t leave the house without bumping into someone who knows me via Amy. Sometimes I don’t even recognise that person and have an internal panic. Not only does she have a massive team of specialists, staff and experts – people are fleeting. 

People get new jobs, people retire, people move away to new areas. My child gets past a certain age, she moves onto a team for her age group. I’ve met people who remember us from years ago who claim that meeting us inspired them to go into the job they go into. It’s amazing how these chance encounters can alter the trajectory of someone’s life.

One of the things I grapple most with, is my emotional attachment to those who make a real difference to us.

You know in your heart when someone cares as in really cares. They don’t just care because they are paid to, but because they are human like you, and they like you and your child as a person and want to see you all thrive. Those people become indispensable to you. The shame for those indispensable people is that it puts a lot of pressure on them. They become your go to person and thus increase their own workload by virtue of being helpful. It also impacts that professional barrier that has to be kept up. If that barrier comes down and emotions get involved, it can complicate things. 

It’s hard working so closely with people for so long without starting to feel like they are extended family. It’s a really hard line to draw. It’s only natural that you become like colleagues or friends.

Amy has just been in the same class at school for two years. In September she moves onto another class. Today I find myself emotional as it means a team of at least 7 people will no longer feature in her everyday routine. It’s 7 people that understand her. It can take a lot of time to understand families like ours. Amy is non verbal, but if you spend enough time with her getting to know her, she has so much to offer. She has so many non verbal cues that you will only pick up on from knowing her for a long time. So to me, people who have been with her for a long time are really important to us. It’s an anxious time for any parent when their child starts a new class or a new school. I remember as a child those nerves in my belly on the first day back. “who will my teacher be? will they be kind? will they understand me?”. I feel butterflies in my stomach even thinking about it.

When we had to change pediatrician as ours was moving to another hospital – I thought my world was collapsing. I felt as if the rug had been pulled from under my feet. Our doctor had been there since day 1. I remember our earliest discussions. “What if she never cries? How will I know what’s wrong?” I remember her asking me what concerns I had about going home. This was at a time I thought we may never be going home. She helped us in more ways than she could ever know. She guided us and taught me so much. She listened as she really listened. If there was a different treatment I wanted to try she didn’t do what some doctors do and shrug it off, she would discuss with colleagues, read the studies I sent her, and we would plan it together. So you can imagine my shock when she left.

I had that sick feeling in my stomach. Who will our next doctor be? Will they know Amy?

Experienced as they may be, they weren’t there from day 1. It’s so draining having to explain yourself and your child over and over again. Anyone who has had as many hospital admissions as us will know that feeling when they ask “what medications are they on?” “can you give me a brief history of Amy” and so on. You know as well that during an admission you’ll have this exact conversation at least 3 times a day. You know they’re just doing their job but wow, talk about groundhog day. (Thankfully at our local hospital some of the team run through this stuff quickly as they know us well!)

All of this anxiety I feel stems from that feeling of “what will happen if I’m not here one day?”. I don’t want Amy to be here without us being confused as to why she has been “abandoned” and why suddenly there is no one around who can understand her. It’s the sort of thing that if I think about it too much I can send myself into a panic attack. I am working hard to accept that so many people will come and go and that nothing is permanent. I have to hope that those who do care and do stay, keep investing that time and patience into us and that they know just how important to us they are. I hope that Amy never ever feels lonely, and I hope that she feels more and more understood as she learns and grows. I hope she knows how valid, loved and important she is and that there are always people around who reinforce this to her. She has been through so much and plods on with a determined ferocity everyday, I could not be prouder if I tried.

There are still people from 6 years ago I think about daily and the impact they made on our lives.

I feel grief and sadness that they are gone, but also grateful for their time and experience. What may have been only a fleeting microcosm of their vast career might be something that to this day is giving someone somewhere else strength today still. 

I often joke about enjoying being a bit of a loner and a homebody. But the truth is we all need connections and friendships. When you’re a parent carer you are sort of forced into a more isolated way of being. I no longer walk into an office of hundreds of familiar faces each morning. I no longer chat and laugh around the coffee machine with colleagues. I no longer attend team meetings and cringe at ice breakers. I often stand alone at my coffee machine thinking of those simpler times, knowing that my next conversation will likely be with carers, physio, teachers, doctors, etc. I read about Amy’s day at school hanging onto every word knowing that she can’t tell me about her day. I keep refreshing the app desperate to know that she had a settled or happy day.

I wait eagerly for Phil to come home from work, a bit like a pet really. This of course will change as Amy breaks up from school today – So I’ll be plenty busy!

It’s often nice being surrounded by people whose normal life revolves around all the same stuff as us. You can talk without explanation about medical issues or equipment. You’re not speaking a foreign language, you’re not a novelty. Sometimes though I feel compelled to break away from that and prove to everyone out there how actually we are just like them and that the world needs to learn to understand my child. I shouldn’t be feverishly clinging onto people who understand her, more work needs to be done to include and understand people of all abilities. Sometimes I need to pull away the safety net and not assume that people are either unkind or don’t understand.

I half joke half don’t constantly with people “you can’t ever leave us!! I’ll lock you in!” if i even get a hint that they may be planning to change job. It’s just another facet of our life that we have no control over. It’s never personal when someone moves on, but it’s hard. People are allowed to retire, to move on, to have their own lives! But it doesn’t make it any easier. In the last year we have said goodbye to so many people who have known Amy since she was around 10 months old. Sure, we’ll see them around still, and I wish them all the best, but I do miss them and I’m sure Amy does too. So long did we spend teaching Amy those people’s names whilst they form tgheir own unique bond with her.

So to anyone who works with families like ours and cares – we see you and we are grateful. I know we aren’t always the easiest to work with. Our highs are high, but our lows are also very low. It can be so exhausting.

I know you feel our frustrations at so many things. I know that it impacts you too when things are bad. I know that you desperately seek change in the system to help families like ours. I know that sometimes you feel powerless to help one minute, and determined the next. We go through that daily too. I know that you must jump the same hurdles as us, be bound by the same red tape as us. I know that when you clock off for the day you don’t necessarily switch off. You probably ruminate just as much as us, going in circles over it all. Thank you for being with us, for however long that may be.

Changing Places Awareness Day 2021 – Accessibility Shouldn’t be a Luxury

The 19th of July marks Changing Places Awareness Day.

My twitter feed was awash with posts much like the ones I see myself post. Posts praising these facilities, those that were angry and frustrated that they aren’t in more places. And those celebrating that the world is starting to change for the better with regards to accessibility.

With each year that passes, these facilities become even more important to us.

Amy is 7 now. The days have long since passed that we can place her on a baby changing table for a change. I remember cringing as you see the table struggle under the pressure of her movement, even though she was just under the weight limit.

I am at that point now where we go to a “disabled toilet” to find that I can’t even maneuver her chair into the room. How is that right!? Days out are now planned around changes. I don’t want to change her on the floor of the van. my back can’t take it, and it isn’t fair on her.

I can’t imagine, as a privileged able bodied person, going anywhere and being told that the toilet facilities aren’t for me. There would be outrage if this was the case. So why should it be any different for people with mobility impairments? 

To me changing places represent dignity, hygiene and comfort. 

It saddens me still that such a facility is a luxury and not standard. It shouldn’t feel like a huge treat when we are able to access something with ease. Instead we are forced to either resort to something less than ideal or even dangerous, or to simply return home and isolate ourselves.

I was astounded yesterday by some of the statistics that Changing Places posted. Did you know that only 55 museums/galleries and art centres in the UK have Changing Places? Only 18 pubs and restaurants across the country are registered with a Changing Places toilet. And this is the saddest one for me – only 1% of attractions have a changing places toilet.

We are fortunate enough to have been to a few zoos with the right facilities. It makes such a huge difference to the day. It’s reassuring, it allows us to spend more time (and money!) there; it enables Amy to know that she is just as important as everyone else in the world and that her needs matter. 

Have you ever sat down in the exact same position for 3+ hours?

I’m not sure I have.. Not without having a little stand or a stretch. The longer I sit the more I ache. It isn’t good for you to sit down all of the time. Changing places allow Amy an important stretch. Quite often on days out I’ll start to get what I call chair guilt. Obviously we love Amy;s chair and it’s how she gets around and accesses the world… equally, position changes are important. Otherwise why would we spend so much time doing physio, stretches, standing frame time etc. it’s important for her for so many reasons. 

Sometimes when we hoist her out of her chair and lay her down, she is stuck in a seated position. Her body’s weight has been putting all of that pressure on her hips and spine. Her tight muscles (also known as spasticity) are locked, and it can even hurt her coming out of this position. The relief on her face when she realises she has freedom to roll onto her side or stretch is monumental. So it isn’t just dignity and hygiene we gain from these facilities, it’s comfort and relief too.

I am under no illusion as to why there is such a distinct lack of these facilities. I’d say the main one is money. Money is the reason for so many things. On top of money it is space. And third, I suppose it’s either ignorance or not caring. Prior to having Amy it had never occurred to me how wheelchair users navigate the issue of toilets. I had naively assumed that people could self transfer and use grab rails. Or I had perhaps also assumed a lot of people would be incontinent and maybe have a urostomy or stoma bag or something.

A grab rail and a little extra space isn’t enough for everyone.

For us we need a level access/height adjustable changing table/bed, a hoist (preferably H tracking), and lots of room for a big wheelchair and medical equipment. For others they may need a height adjustable sink, substantial grab rails surrounding the toilet etc.

A lot of people probably don’t want to think about it… but we are all one accident or incident away from becoming wheelchair users ourselves. More babies are being saved and growing to develop complex needs. We have an ageing population which comes with reduced mobility for some. There are so many reasons why these facilities are needed. I still can’t believe the local hospital doesn’t have one, but then I am told that only 93 hospitals in the UK have changing places.

I remember watching a video about a girl who had become a wheelchair user and was going on nights out with her friends. She realised on her first attempt that actually most of the good bars in her city had steps into them and no other access. I remember that look on her face when she realised that she would either have to go home, or find somewhere else and make everyone change their plans. (thankfully she had good friends and they went elsewhere). But it made me realise how we all see the world through a different lens.

Through Amy, I view the world completely differently. I don’t expect every single building to have a Changing places.. Though obviously that would be fantastic. But I do expect things to change from where we are now.

I look back and wonder how families like ours coped before. I suppose the answer is that they stayed home? Or just had to crack on as best they could.

We recently bought a second hand massage table that folds up. So if worse comes to worse, we can lay Amy on this somewhere. We don’t have a portable hoist yet but I am guessing this will be added to the already vast amount of things we pack for a simple day out.

I have lost count of the times I have written to big companies about installing these facilities. I’ve had meetings with MPs. I don’t want to be someone who complains about something and does nothing about it. I have probably made something of a nuisance of myself to the local council and our local hospital. But if we don’t raise these issues how can we ever expect change?

Shoutout to all of the places out there that are showing everyone that they deserve the same level of comfort and hygiene as everyone else by installing Changing Places. I am very much looking forward to our local IKEA having them soon, as well as our science and industry museum. Amazing to see that list keep on growing.

I hope you like the picture I have chosen for this blog. I know it isn’t one of my usual “changing place photos” that I like to use. I was so happy when we found a ride locally with a wheelchair ramp on one of the carriages. Amy was a bit confused at first but after the first lap you could see her getting so excited to see us and wave again. Every child deserves to laugh on a train ride.

Too Much Control

Why do insurance companies get to make the call of if my son can have something to improve his quality of life? Why do insurance companies have so much control over the lives of our children? These are questions that consistently dance around in my head from day today. The power that insurance companies have over making life and death decisions for our children is absolutely mind blowing.

We recently scheduled Sawyer for his vagal nerve stimulator surgery.

In my last blog I talked about it being surgery number 13 and how helpful it would be for him. Unfortunately, two days before surgery they had to cancel it because our insurance company had denied it. Their reasoning stated that we had not tried enough things such as; medicines and that he doesn’t have them often enough.

The thing that they failed to notice is they recently approved his other medicine that we wanted to try, while we wait for the VNS. They approved it, but covered so little that we would be paying $1500 per month for a very small percentage of a chance of it working. When we decided for a different therapy they denied that as well. The vagal nerve stimulator is definitely not a 100% guarantee. Sawyer also doesn’t have seizures every single day he doesn’t even have them once a month. When Sawyer has seizures they require an ambulance ride and an extreme amount of medical intervention. They are very much life-threatening and require sometimes five doses of his rescue to stop them. At that point he either has to be intubated or put on high levels of oxygen because his breathing is so suppressed.

The vagal nerve stimulator could improve his quality of life so much so that even just making the seizures less severe could be life altering. If we do not have to hold our breath anytime we are out of town, any time that he is falling asleep or any time that he is sick should be enough to do the surgery. If this stimulator could prevent an ambulance ride or hospital visit and slow down the seizure so the rescue medicine could work; then maybe one dose of that would be a game changer for us.

Why do they feel as though they can make this life or death decision?

What I don’t understand is why they don’t see that it is a detrimental medical intervention that they have turned down. Why do they feel as though they can make this life or death decision? Do they truly believe that doctors would recommend a surgery that isn’t researched and best for their patient?

When I called the insurance company and the person I spoke to said they couldn’t believe that it was turned down she said she would get back to me in 48 hours with a list of things to do or some answers. I called back after a week and I have yet to hear back and this was two weeks ago. I can’t understand why insurance companies hold the power over our lives and our children’s? What can we do to help prevent this? I don’t have all the answers. I don’t even have some of the answers.

What I do know is these people do not walk in our stressful shoes. If you are reading this, I am sure you have been there or heard of someone in our shoes. We are not even a fraction of the people who have problems dealing with insurance. Keep Fighting and keep asking questions.

“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.