This time two years ago, we sat down with freshly brewed cups of tea in our tiny front room in Moss Side with Rufus’s paediatrician and his physiotherapist to be told the news we both expected and dreaded in equal measure. Our perfect 1 year old boy has Angelman Syndrome. We were handed a letter from the Genomic Diagnostics Laboratory which explained that he has ‘Chromosome 15q11q13 Deletion consistent with Angelman Syndrome’ (with a whole load of other letters and numbers afterwards). There it was in black and white for us to see. We had spent the last month leading up to the appointment researching Angelman Syndrome online as we suspected it due to a couple of clues given to us at previous medical appointments (see my first ever blog post Mothering an Angel for the clues). Still, there’s quite a difference between suspecting something and being told it in no uncertain terms by someone official holding a letter spelling it out good and proper.
I remember the date well because I remember thinking about the irony that the rest of the country was getting ready for Halloween the very next day, preparing to dress up and celebrate pretend horror and fear, when we had our own very real horror and fear to contend with. I’m not one to dwell on dates and special days (I just about remember anniversaries and birthdays) but I felt it was important to bring this one to the fore this year.
A few weeks ago my foundations were a little shakier than usual after watching a BBC documentary by actress Sally Phillips about the potential screening out of Down’s Syndrome and the documentary touched on the screening out of other genetic abnormalities, posing the question: Is this the kind of world we want to live in? For me, the answer is simple and takes no time to consider: No.
Here’s why. Rufus is very much alive and kicking and our world is richer for him being in it. This, I am certain of.
All parents-to-be in this country are offered a screening to find out if their child has Down’s Syndrome while they are pregnant and when the results come in that is their Diagnosis Day (or potential Diagnosis Day depending on whether they opt for amniocentisis). For many of these almost-parents, Diagnosis Day never turns into Diagnosis 2nd Year Anniversary because they make the decision never to get to that point.
Watching that documentary made me feel so sad that the world I am raising my precious boy in is even having this discussion about the worth and value of people like him. It made me sad that there is a very real chance that people with Angelman Syndrome may well be ‘screened out’ in the future. The statistics for Down’s Syndrome terminations are shocking right now and will potentially get worse. I tried so hard after watching the documentary to figure out why people would go ahead with a Down’s Syndrome termination and the only two reasons I could come up with were fear and inconvenience.
Fear of the unknown and the inconvenience a special needs child may be to an otherwise perfect (yeah, right) parental existence.
After diagnosis, it took us both a while to integrate back into the real world, into our friendship groups and social circles and we were constantly asked the question, “How are you doing, I mean really doing?”. People were great, they listened, they cared, they wanted to know how to help and what they could do for us. Many people in our lives still are utterly incredible and care about our little family more than is humanly possible. But we’re not asked that question quite so much now. The assumption is that two years into it we should be generally doing pretty okay most of the time. But here’s the thing, fear and inconvenience… I’m going to be honest…. they’re both there.
The fear comes mainly at night, after the middle of the night wake ups when I can’t get back to sleep and I find myself thinking about things like special schools, wheelchairs, changing nappies forever, changing nappies when we are out and about and he’s too big for a baby change, seizures, sleep deprivation, unidentifiable illness, when will the hair pulling stop, what will I do when people don’t think he’s cute anymore, how will I lift him when he’s bigger than me, will he ever climb the stairs, what if we can’t build a downstairs bedroom and bathroom for him, who will care for him when I’m too old, how will I care for him when I’m old, who will look after him when I die, how will they ever know him like I know him… the list goes on. These are the fears.
The inconvenience… well, in all honesty it’s bloody hard work raising Rufus. He can’t talk, he can’t walk, he can’t feed himself unaided, he’s incontinent, he can’t dress himself, he has no concept of danger, he doesn’t put his hands out if he falls, he pulls my hair and glasses when I hold him, he’s a dead weight when I lift him, he puts everything in his mouth, he grabs other children, he ruins games, he wakes at night and doesn’t always go back to sleep, he can’t play independently for a decent length of time… the list goes on. These are just some of the inconveniences.
But I have a choice. And it’s a daily choice. Do I let the fear own me and the inconveniences be the way that I look at him and think of him? Or do I park the fears to one side and focus on the privileges in raising Rufus? Thankfully, I choose the latter everyday but it’s important to say here that I make those deliberate choices multiple times a day and I don’t make them lightly. I battle with the fears and tell them to do one when they keep me awake at night and I see the inconveniences all day, every day but we live in a world which is just not set up to make our lives easy so maybe the real inconvenience here is the world we live in, not Rufus… there’s another blog post I think.
And choice is great. Choice is wonderful. But every day, parents-to-be are making the choice to give life or take life away. Personally, it’s not a choice I could make but I think to make it because you are afraid of what the future will hold or quite how badly a disabled child could inconvenience your perfect picture of parenthood is just not good enough. Because anything could happen, right? At any point on the parenting journey anything could happen.
So, two years down the line how are we doing? I mean really doing?
Well, just look at him. He’s a beauty and it is an utter privilege to be his mummy and to share him with my wonderful world of friends and family who truly get him. I watch him adore people with his excited bum-shuffle and show-stopping grin and give them a loving cuddle that’s so intense it hurts then I watch them go back for more and struggle to pull themselves away from him (sometimes it’s genuinely because he’s got hold of their hair but I like to tell myself it’s because they adore him so darn much). I love the smiles he brings out in hurting people and the strangers who are weirded out by the fact that he bursts into laughter at the sight of them (usually old men with glasses – bearded old men with glasses are THE BEST). I love the way he is completely smitten with me and his Dad and that we are better than any toy, any snack, any TV show… and we always will be. Being the very best thing in your child’s world is a really, really hard thing to beat. I love the fact that he has the ability to just slow life right down by reminding me that being in the presence of another human being and sharing a moment together is what it’s all about. Who needs mindfulness when you’ve got Rufus? I love that we are not doing this alone and this is the most important thing. As soon as we began to let people into our post-diagnosis world, to answer the question in honesty (often with tears and snot) the fear lessened and the inconvenience lightened. We are getting better at it but it’s still sometimes hard to share… and I mean really share the burden. But I know that in sharing the burden with friends and family who are worth their weight in gold, they get to share the joy and privilege of experiencing Rufus in their lives.
So as I polish off my millionth post-diagnosis cup of tea, I can honestly say our lives are richer, bigger, better, fuller and overwhelmed with love and adoration from our precious little boy. Fear and inconvenience? Yep, they’re there, somewhere in the background, as I guess they are for all of us at some point, but they’re not winning anymore. They never will.
Tomorrow I will watch my boy turn 3. His birthday has caught me off guard as we have been so overwhelmingly consumed as a family these last few weeks by moving house that I’ve had no real time to process it and get ready for it. Until now. I am about to have a 3 year old. I stood and thought for a few minutes today about how I feel about this and then how I imagine I should be feeling about this as a parent of a disabled child. A disabled child who is so far from where your average 3 year old is in terms of development. A child who, on his recent early years development profile, was averaging a generous 10 months. Should I be grieving? Should I be thinking about the ‘what ifs’, the ‘what could have beens’? Pondering about which 3 year old appropriate presents he might be getting tomorrow if he didn’t have Angelman Syndrome? Mulling over the fact that he would probably be singing and clapping along to his own Happy Birthday song, blowing out his candles by himself, riding a new bike or scooter tomorrow afternoon, having a party with friends whose names he could actually say… and the list goes on. I thought about all these things for a brief moment, checked myself and then stopped.
I am not in the business of comparing.
I am not in the business of wishing and longing for something different.
I am done with that.
Tomorrow is Rufus’s day. It’s not my day to stand back, watching him whilst yearning for an alternative tale to tell.
I do not have permission to do that tomorrow.
Tomorrow, good health permitting, will be a day of joy. I often use the word ‘joy’ to describe Rufus because happiness just doesn’t seem to cut it. There are grades of happiness. ‘I’m happy with how that wallpapering turned out’ is different from ‘I just feel so happy right now’. Joy though, joy is different. Joy pierces through every layer of feeling ‘meh’. Joy is a thing that wells up from a deeper place regardless of whatever else is going on outside your own body and I think Rufus, most of the time, nails the epitome of joy. You can see it welling up in him if you hang around with him long enough. It comes from somewhere most of us have to tap pretty darn deep into on an average day and it’s the same place he stores his giggles, where his pining for intense cuddles live and where the words that don’t have sounds are kept.
Rufus will be showered with cuddles, kisses, cards and presents tomorrow. He’ll eat cake and have candles blown out for him. We’ll sing Happy Birthday to him (quietly, mind you, because for some reason, that moment at parties when the lights go out and the cake comes out fills him with fear and he erupts into a bag of silent tears). We’ll take him somewhere fun and have balloons. He’ll have all the usual birthday stuff. He will be his own little 3 year old tomorrow, my 3 year old who I am fiercely proud of.
And if I catch myself going into comparing, wishing, longing, yearning, pondering mode, I will remember that Rufus The Joy Bringer doesn’t care a jot what any other 3 year old would be doing on their birthday. He is not in the business of comparing, therefore, neither am I.
Bring it on.
P.S. Yes, he is getting a helium cylinder for his birthday. Why not? It’s the gift that keeps on giving.
Last week I witnessed the remarkable sight of my 2 and a half year old son stroking a dog for the first time. Remarkable because for a long time he has had a very real fear of dogs (see previous blog post) which, in that precise instance, was told to ‘do one’. I am still in admiration of his ability to overcome his greatest fear and it has challenged me to think about one of mine and to speak openly about how I am dealing with it.
This may sound absurd to some people but one of my biggest fears for the last 18 months has been to be in the presence of normally-developing children who are the same age as my son; to spend time with them, watching them grow and develop, talk and become little personalities, interact with their peers and siblings and seeing the relationships they have with their mums that I crave and long for. Around the time that we began to suspect something was very wrong with Rufus, a few months before he was diagnosed with Angelman Syndrome, I started to pull away from people, social occasions, toddler groups, friendships and particularly from those who had children the same age and younger. I made excuses not to turn up and we kept ourselves to ourselves. Prior to this I had been involved in several toddler groups, seen friends regularly, hung out with other new mums and spoken optimistically about how our children would be friends and grow up together doing the same things at the same time. But something changed in me when I started to realise he was different and he wasn’t meeting the dreaded milestones. On the outside I made excuses for him, saying he was lazy, a boy, enjoying other people doing things for him rather than trying himself etc etc but deep down I knew there was more to it than this and the less he did, the more his peers did. Then the next round of babies turned into toddlers and began catching up then overtaking him and there he was still just sitting there on the floor, not babbling, not crawling, not pulling up, not feeding himself, not doing anything. I felt that I was no longer able to stand by and watch these children develop and grow while my boy did nothing. It hurt too much and I could not celebrate their milestones. I became a terrible person to be with at toddler groups. I still am. When the majority of conversations at these places revolve around what people’s children are doing, most mums find common ground, laugh and complain about the ever changing stages of development and the inevitable comparisons creep in. I can do nothing else but pull away from those conversations and sometimes I literally have to walk away.
And who did this help? No-one. I was preventing my older daughter, who desperately needs to socialise with other children on a daily basis, from getting what she needed. I was taking away the chance for my son to thrive in his favourite environment, around children and adults. And I was a sad, lonely mum who was protecting herself from feeling worse but in the process was not moving forward. I was stuck.
Once the actual diagnosis arrived we drew even further inward for a short time. For a while it was a bleak place for us. We had to re-evaluate who we were, how we fitted into the complex matrix of the friends and families around us. Rather than jumping head first into our new lives as a special needs family and flying the special flag, we held back, stuck together as a unit of four, pressed the pause button and grieved. And this was okay. This time was so important. So desperately hard and sad but much needed. Then a seed was planted in my mind. A tiny seed that said,
‘It’s time to come back’.
Reinvented and freshly-labelled, we returned to our lives. Thank goodness. We entered into the world of socialising again, although we chose more carefully this time who to let in. The blog posts came flooding out, the Angelman t-shirts were designed and worn with pride and the friendships were reformed… although some had to fall by the wayside, along with our old selves. One ‘friend’ in particular who told me I was ‘living every mother’s nightmare’ quite simply didn’t get it nor was she prepared to try either. And somewhere along the return journey I decided it was time to face my worst fear and join a new toddler group. Treading carefully, I chose to join just one group at first where I felt I was safe, known, loved and accepted already and because of that, I knew my boy would be all of those things too. Some of the mums in the group are friends with children who are only a few weeks older or younger than Rufus, who I had talked with in the early days, long before Angelman Syndrome reared its ugly head. I remember our optimistic conversations well.
The fear that crippled me and took me away from growing and nurturing these friendships was still very present but in order to move on I had to face it. In spending time in the presence of these little people, I was seeing first hand exactly what my boy could have been like if he had all of his chromosomes in tact. I realised now that he could be walking, talking, making friends, playing with other children, using toys as they are intended rather than just mouthing them, climbing, running, feeding himself, doing jigsaw puzzles, talking about books. The list goes on. Every realisation of what we were missing out on hit me like a bullet. Why on earth would I do that to myself? Why endure the pain of seeing into a future that was never going to be, that will never be? Why not bury my head in the sand and just avoid other people’s children for the rest of our lives? Because I needed to move on. And what a good job I did because there was a hidden treasure in all of this that I wasn’t expecting. In spending time in the presence of these beautiful little humans, I was able to see how they interact with Rufus and it wasn’t at all what I was expecting. Yes, at times they look at him strangely as he pulls their hair or goes to grab their food but in general he is just one of the crowd, accepted as he is. I always have one eye on Rufus wherever we are so I get to see lots of beautiful moments between him and his peers. He is offered snacks, patted on the head, given toys and drinks. One of the older children even gets right in his face and offers his hair for Rufus to pull because he knows how much he loves it. This is like heaven for Rufus – a friend who actually likes having his hair pulled! One of my favourite toddler group moments though was a few weeks ago when we were packing away the toys and mats. A bunch of children gathered on one of the mats and one of them laid down and the others copied. Rufus bum-shuffled over and sat on the mat too. I suggested we sang ‘Sleeping Bunnies’ so we did. If you don’t know this children’s song, it starts with everyone lying down pretending to sleep and then there is a part where all of the ‘bunnies’ wake up (jump up) and begin to hop. At this point in the song, the little group who had previously been ‘sleeping’ all began to jump up and down. At this precise moment, a little girl next to Rufus noticed that he hadn’t jumped up with the rest of them and simply put her hand under his arm and tried with all of her strength to lift him to standing.
For me, this moment was golden. Had I not forced myself to come to this toddler group and endure the bullets of seeing what could have been if Chromosome 15 was all there, I would not have had the chance to see this beautiful, simple moment of what was essentially a friend helping out another friend. To her, that was all it was. She didn’t see Angelman Syndrome, disability, balance problems, inability to bear weight or coordinate leg muscles to stand up from sitting down. She just saw a boy who needed a bit of extra help.
And this gives me hope for his future. Surrounding him with loving, accepting children who don’t yet know the extent to which he will need ‘extra help’ but yet are willing to give it a go and at least try. I know he won’t be the obvious choice for a play date, I know he won’t be number one on people’s birthday lists and I know he won’t be seen as anyone’s ‘best friend’ but what I do know is that he is part of something and he’s on these little people’s radar and that, for me, makes facing my fear worth it.
Maybe it’s time to face your fears.
The sentiment of this blog post is not original, new or ground-breaking. It is nothing that hasn’t been said a thousand times already. It’s actually a phrase that has been heard and read so many times that it has become a bit like wallpaper. A tired, cheesy, throw-away piece of advice that is always so much harder to act upon than the advice-giver can ever imagine at the time they dish it out. Most of the time we agree that we probably should do it but very rarely do we actually get head to head with our biggest fears.
Yesterday I saw someone really facing their fears and it blew my socks off so much so that I had to write about it.
For the last year, Rufus has had a very real fear of dogs. There was no particular event that we can pin-point as being a catalyst for the fear, no traumatic episode we can recall, just one day we walked past a dog in the park and he freaked out. As a non-verbal child, he cannot express his fear in words but his body language says it all. Strapped into the pushchair with nowhere to escape, at perfect eye-level with most average-sized dogs, the only thing he can do is try his utmost to protect his own body. Upon seeing a dog approach him he goes still, stares straight at it then pushes himself as far back into the seat as physically possible and raises his arms, fists clenched so that the backs of his hands are protecting his face and eyes. He gets a look of pure fear on his face, sometimes whimpering right up until the dog has passed by. He then follows the dog with a stare until it is out of sight, often watching out for it long after it has gone. We often prepare him for an approaching dog now and tell him that it’s okay, that the dog isn’t going to hurt him and his big sister will sometimes come alongside him and hold his hand, telling him not to worry.
He knows the word ‘dog’ and stills himself if he hears us even chatting in passing about a dog, looking around for where it might be. He reacts similarly when he hears a bark and his fear is so real that it has got to the point that if he is watching TV (and his watching position is as close as is physically possible to the screen) and a dog comes on screen, his arms go up and he bottom-shuffles away as quickly as he can, looking back to check if it’s still there. He is even scared of life-sized fluffy toy dogs and furry animal hand puppets. We had resigned ourselves to the fact that it would be near impossible to ever be dog owners. We had always imagined living in the country one day and having a dog to walk and when Rufus was diagnosed with Angelman Syndrome at 13 months, we heard of other families who became dog owners mainly to protect their Angels and warn them of seizures and accidents which sealed the deal for us that we would one day own a dog. However, once his dog fear had set in, we saw this as a very unlikely possibility.
But yesterday something unbelievable happened. Walking through the park I bumped into a friend who was sitting with his friend and her dog. We hadn’t seen each other in a while so Rufus and I went over to them and joined them on the grass underneath a tree. I said we probably wouldn’t be able to stay for long because Rufus is scared of dogs. He sat on the floor near to me with a serious face and looked at the dog, who was very chilled out, still and quiet but alert. The three of us chatted and shared an Argentinian mate while Rufus went back and forth from my knee to my friend’s knee, giving us Angel love, all the while keeping a close eye on the dog. Rufus then made it clear he wanted to break away from people’s knees and have some freedom on the grass. Not knowing the temperament of Gypsy the dog and seeing Rufus on the grass less than two metres away from her I was slightly concerned about how this would go but keen to let it play out (and enjoy our drink). What happened next was quite astonishing. He began to bum-shuffle towards the dog. He chose to move closer to his biggest fear. He then sat less than a metre away from it and just watched it. This was enough of an achievement in my eyes to know that something incredible was happening in his mind and he had realised that this particular dog was not scary and could even possibly be a friend. Then, completely out of the blue, he moved closer, reached out and lightly touched Gypsy’s leg. She moved a little but didn’t flinch or react abruptly. I was shrieking and high-fiving him inside but reacting all cool-mum on the outside. He then got even closer and stroked (grabbed) her on her back. By that point I couldn’t contain my excitement any longer and probably ruined the beautiful break-through moment by all the cheering and cuddles I gave him.
He faced his fears head on. This was not an engineered situation. He had not had therapy beforehand. We had not researched the breeds and temperaments of dogs and picked one to hang out with that would be chilled out and patient with heavy-handed toddlers. We had not hypnotised him or prepared him for this eventful day. It just happened. Something clicked in his mind. Given the freedom to choose which way to go, he chose to head in the direction of something that had developed into a very real fear and had over a year’s worth of connections and bad memories. Unlike being contained in a pushchair, in this situation he was free to bum-shuffle away or cling on to me. He did not have to go near the dog. But he chose to and the experience was nothing like he had imagined or built up in his head.
Sometimes we need to just sit in the presence of our fears. Not move away from them, protect ourselves from them, react in the way we always have done, the only way we know how to. Sometimes we just need to be near them and look them in the eye. Rufus didn’t jump in and get Gypsy in a headlock the way he does with everyone he knows and loves but he took his time and assessed the situation, where he was, what his escape route was and which safe person was near him. I am 99% sure that none of this would’ve happened though if I hadn’t been right near him, if I’d have sat him on the grass near a dog and legged it out of the park. Maybe he faced his fears because he knew he was near safe hands. Maybe he took that leap of faith because he knew I had got his back. Maybe he had heard us every time we had said ‘It’s okay, it won’t hurt you’ (even though we know this isn’t necessarily true with some dogs out there!) and decided that now was the time to test out what this crazy woman keeps telling me because she loves me and she wouldn’t put me in a situation that was dangerous.
Whatever the reason and whatever the thought process I am in awe of Rufus today and if he can reach out and stroke a dog, imagine what you can do.
PODD stands for Pragmatic Organisation Dynamic Display and in its simplest terms it is a book (and now app) with a whole array of coloured pictures/symbols, organised into pages that are easy to navigate and follow. It is used by people who cannot speak using their voices. It was developed by a woman who, saying I am thankful to, is possibly the greatest understatement I will ever make. Without her our future would look very bleak. In fact, our future would look much the same as it did on the day that our son was diagnosed with Angelman Syndrome and we heard the words,
“He will probably never speak and if he does it will be only one or two words.”
But now our future is full of hope, excitement and anticipation for what we might eventually hear him say.
Yes, he may never utter a word from his mouth.
No, he WILL speak and it will be a lot more than one or two words.
Since we attended a two day PODD training course last week, led by Rosie Clark, I have pondered how differently I may have felt upon learning that our son had Angelman Syndrome if his paediatrician had said something like this:
“He will probably never speak a word out of his mouth BUT… Listen up, I have something exciting that you REALLY need to hear.
He does have a lot to say and don’t you let anyone tell you otherwise. Don’t you dare listen to speech therapists and teachers who say that he needs to clearly choose between two objects before he can prove he’s ready for the next communication trick for non-verbal performing monkeys. Laugh in the face of anyone who tells you he’s too young and he’s not ready. Please, please ignore the NHS description of Angelman Syndrome and all of the depressing outdated online information. In fact, truth be told, we don’t really know quite how great his cognitive abilities are because people with Angelman Syndrome don’t score highly on regular tests due to the fact that they have a hell of a lot of other stuff going on in their brains and bodies which get in the way of their ‘performance’. However, you need to be aware that you are about to embark on joining the most exciting revolution of your life. If you want to. It’s a revolution which is only a few years old and which is only a few thousand strong but is made up of what can only be described as a bunch of crazies. Many of them are actually parents or professionals of people with Angelman Syndrome. They are crazies according to many but they are some of the greatest geniuses the world has ever seen and they see more potential in non-verbal children than anyone has ever seen. They will bend over backwards to show a child that he or she has a right to be heard and has something to say and if they can get the tiniest movement out of a child’s head to show ‘Yes’ and ‘No’ then they have effectively invited that child into our world (and us into theirs) and opened up every door they possibly can to the land of communication. These crazy geniuses will give you hope beyond your wildest dreams that you will hear your child speak and they will give you the skills, the motivation and the encouragement to go for it. They genuinely believe and between them have decades of video case-study evidence and real-life proof that teaching non-verbal children to communicate in a particular way, day in, day out, will not only reveal their basic needs and wants but will also open up a can of worms containing thoughts, opinions, preferences, ideas, jokes and dreams. Yes, your son has all of those inside him just waiting to come out and it is your joint responsibility to show the world just what he is capable of. Is that a revolution you might be interested in joining?”.
Gosh, let me think for a minute…
I honestly imagine myself hearing a speech like that and I wonder if I wouldn’t have melted into an anxiety-ridden, grieving wreck for the few months following his diagnosis. I imagine what it would’ve been like if I’d had some glimmer of hope that went beyond, “but it’ll be alright because people with Angelman Syndrome are always happy” (I’ll let you into a secret: they’re not). That was genuinely all we had to cling on to at the time but this, this would’ve been something else.
These crazy-geniuses literally have the ability to change lives. Gayle Porter, the woman who developed PODD in Australia many years ago started it all off and having developed the first PODD book because she saw a need and, more importantly, saw the potential in the children with Cerebral Palsy who were attending her clinic, refined and improved it then went on to make it accessible for a range of abilities and also for children who have visual impairments. She has spent years and years working with children, teachers, therapists and parents to show them how to use the PODD communication book in a systematic manner so that all parties involved use it in exactly the same way. The end result of decades of work can be different for each child. For some who, at first, could only bang the book at random with their closed fists and chew the edges of the laminated pages, they may discover and refine their pointing finger and may independently and autonomously use the book for communicating. For others, whose physical abilities may always be a hindrance to their desire to communicate, they may still need a partner to assist them but together they will find ways to speed up and improve the process.
Having heard stories and watched videos of babies through to teenagers using a variety of different styles of PODD books with an array of conditions and disabilities, it is hard to imagine a condition where it would be impossible for her to come up with a communication solution. Honestly, this lady is a genius! And as we sat there at the end of day 2 of the course, having heard success story after success story, we waited patiently for a story which we could directly relate to, one of a child with Angelman Syndrome. The final slide of the day came up and there in front of us was a testimonial from a parent whose daughter has Angelman Syndrome. A thank you list for all of the things that they now know about their daughter that they didn’t know before she used PODD, like the fact that she preferred spaghetti to pasta and that her favourite creature is a slug. A beautiful tale of her using PODD in the back of the car on a long journey to repeatedly say ‘I love you’ to her mum. Because she could. Because she wanted to.
Last week we spent two days learning the theory and being trained in the practical. We have taken away with us a skill set that we didn’t have beforehand but more importantly than any of that we are now inspired and hopeful that this thing is possible. In all honesty, we have no idea if it’ll actually work. We have no timescale and we have nothing to compare it to. Every case is different and every outcome is unique. And it is completely up to us as a family, as a team of people around Rufus and as his village if this is something we want to do. Rufus will be happy (most of the time) if we don’t do it. He won’t know any different. We haven’t yet told him about PODD. In fact, he could spend his life completely clueless about the whole concept. But, how could we possibly do that to him now? It honestly feels like we hold the can opener to the can of communication worms and we are not doing him justice if we don’t start it now. Let’s not pretend it’ll be easy. We will need to model PODD to him every single day in exactly the same way that you would talk to a baby every single day with the hope that one day you’ll hear its first word. Already we are buying software, tracking down libraries which hold the software compatible with the PODD templates, organising time to create the book, to colour print, laminate and bind the book and after that we will be carrying the book around with us everywhere we go (because it’s his voice and why would you ever leave your voice at home once you had found it?) and we will probably look like total wallies (or crazy geniuses) every time we get the book out to talk to him in a public place but…
why would you not?
And this is the question I’m faced with. I’m struggling to find reasons, after having cried tears of joy for every video of every child who communicated using a PODD book whose parents had previously been told, like us, that their child would never speak.
Okay, I found two reasons: It’s too much like hard work and I’ll look like a total wally.
But surely that’s just regular parenting, right?
When I think about the year and a bit we’ve had since Rufus’s diagnosis, I think immediately of all of the people who have got us here in one piece. The image that comes into my head is one of crowd surfing. I have been to enough rock concerts and festivals to have seen crowd surfing first hand but never brave enough to get so close to the front to be a crowd surfer myself. Yet I feel like I know the feeling.
That feeling of being passed from one set of hands to the next set of hands without knowing where you are going or whether you’ll get there in one piece. That feeling of fully trusting the people who have hold of you and who assure you, “I’ve got this”.
That feeling of vulnerability.
The past year and a bit has been my most vulnerable yet. I have poured my soul out in these blog posts, I have begged for professional help for myself and for Rufus, I have stripped myself of teacher-status to become ‘just a mum’ and with that lost a huge part of my identity, I have practically written funding applications in blood, I have accepted help from friends and family on almost every occasion it has been offered and have reluctantly asked for it at times when I have felt that I should be able to handle stuff on my own, I have cried at the drop of a hat.
But this is what crowd surfing is. Being vulnerable and letting others hold us up. There are times in our lives when we get a ‘boost’. A boost, in crowd surfing terms is when, out of nowhere, you get picked up and launched above the heads of everyone else.
And then you’re off.
When you’re at a packed out gig with your mates, the mosh pit is nice and tight and you decide it’s your turn to crowd surf, you ask your mates for a boost and hope to God that the crowd will play by the rules and pass you along without dropping you (just google ‘crowd surfing fails’ to see what happens when the crowd doesn’t play by the rules). You are entirely at the mercy of the hundreds of hands who are below you. And the hands are attached to bodies who belong to brains who are there to enjoy the gig, to mind their own business but who are happy to reach up for just a few seconds, take a small fraction of the weight and help you move on to where you need to go.
Time after time, during this past year and a bit, people have taken the weight and helped us along. At some point I decided enough was enough and I needed to ask someone for that boost but after that very first hand that helped me up, so many others have followed and for some, they didn’t even notice the impact they had because what they said, did or gave was such a small sacrifice for them and took a small fraction of the weight, for just a second but it was enough to keep me up and moving along. To keep US moving along. For others, their hands have appeared time and again and the weight taken has been more noticeable because they have been privy to the messy, complicated reality and have shared in it. Every hand that has held us up has been noticed and for every one of those we are so grateful.
To crowd surf anywhere far from the front of the crowd, usually where the mosh pit is, is just plain foolish because mosh pits are tight-knit, dense, crazy places where people are close, messy, passionate, on fire and full of energy. And this is where we find ourselves wanting to remain, among these kind of people holding us up, keeping us moving along and giving us greater perspective.
Last week my daughter and I sat down to watch the 1937 ‘Snow White and the Seven Dwarves’. She’s going through a bit of a princessy phase so having decided enough was enough of Frozen, we travelled back to the first ever feature-length Disney animation. I hoped I would learn something new, or at least that we would find some good, wholesome messages somewhere in there. A princess who also happens to be a sweet, young girl without ridiculous curves, overdone hair, make-up and unnecessary sparkles. That was enough for me to stick around for a bit.
Anyway, somewhere in the depths of my memory I knew this movie had something to do with Angelman Syndrome. This time last year, when we first started trawling the internet for anything we could find about it, I remember being struck by some fascinating famous facts: Ian Rankin (author) has a son with Angelman Syndrome, Colin Farrell (actor) has a son with Angelman Syndrome and Walt Disney is very likely to have created a character with Angelman Syndrome. Enter the dwarves. Doc, Grumpy, Happy, Sleepy, Bashful, Sneezy… and then there was Dopey. As soon as Dopey came on screen I knew it was him. My ears pricked up, my eyes opened wide and for the next 90 minutes I actively watched a princess movie with my daughter.
Without forcing you to go off and watch the movie yourself (although, if you have a spare hour and a half I do recommend it) here are some of the features that Dopey has in common with our fellow Angelman Syndrome peeps. He smiles A LOT, he is happy the majority of the time, he is a bit wobbly on his feet, he trembles when he goes to hold the candle, he has a seizure in his sleep, he is very affectionate and goes back for several kisses from Snow White near the end, he doesn’t speak, he eats soap, he drools, he flaps his ears when he is excited (note: our children flap their hands and arms, not ears), he is funny and Snow White absolutely ADORES him.
Okay, so Walt Disney’s choice of name for him isn’t the greatest advertisement for Angelman Syndrome, although I do wonder whether the word ‘dopey’ meant the same in 1937 as it does now. However, I think it’s slightly better than the name he had before he settled on Dopey: Seventh. We know that Angelman Syndrome was given its name in 1965 after Dr Harry Angelman and before that it was known as ‘Happy Puppet Syndrome’ so, I wondered if is it possible that Walt Disney or one of the animators knew someone with Happy Puppet Syndrome? If not, how did they create such a perfect depiction of so many of our children?
I guess we may never know but there is one thing that I can take from this movie that pleases me more than anything else. One thing that Walt Disney advocated for way before his time and, with this, almost 80 years later he still swims against the tide of so many so-called ‘professionals’.
Whatever your theory is on whether or not Dopey has Angelman Syndrome, I think we would all agree he has special needs of some kind. He comes across as cute, silly and is the butt of several jokes in the film but here’s the important thing: he’s part of a group. Part of a team. He is expected to join in and is involved in everything the dwarves do together. He helps, he works and he is included. He’s as much an integral part of everyday life as any other individual in that little company of men. He was chosen by his creator to be in that troop. And lets face it, his creator could’ve chosen numerous other character names (word has it that names like Awful, Blabby, Dirty, Gloomy, Jaunty, Jumpy and Shifty were in the running) but our little Dopey made it through.
At the end of the film Snow White rides off into the sunset with her Prince Charming and it’s time for the dwarves to say goodbye. They each take their turn – except of course Dopey who has had more than his fair share of turns. He comes back again and again for an extra kiss and cuddle from Snow White and that unmistakeable, overpowering affection that is written in the blueprint of every individual with Angelman Syndrome is right there. That burning desire to be right up close to someone who blatantly adores the socks off you. I saw my boy in that moment and I felt proud that someone just like him was seen by one of the most influential moviemakers of all time as important enough to be chosen to be one of his seven.
When the dwarves introduce themselves to Snow White and she calls them each by name, he is introduced to her by another dwarf.
“This is Dopey. He don’t talk none.” says Happy.
“You mean he can’t talk?” asks Snow White.
“He don’t know. He never tried.” replies Happy.
“That’s too bad.” smiles Snow White.
I love her reaction to this. It’s the equivalent of saying, ‘Oh, well, let’s carry on regardless’.
And so we do. We carry on, we do life, we include, we have high expectations and we presume competence. We absolutely expect that every word, every skill, every opinion, every dream, every wish, every joke, every pleasure, every bit of personality is in there somewhere. We know it’s a challenge to tease it all out, we know it’s a massive undertaking that can only be done with a village of incredible people who are all singing from the same song sheet. We know we will be up against professionals and well-meaning advisors and those who are more experienced than us. We know we will look stark raving mad at times for believing these often unimaginable things about our people. But we do it.
Walt Disney didn’t leave Dopey at home that day. He sent him out, gave him the gift of family and brotherhood, let him love and be loved, genuinely believed he could deliver and then sat back and watched in awe as his sweet little man accomplished each task in his own time and in his own way.
In his own time.
In his own way.
Tonight, as I was washing up after dinner, my heart broke. One minute I was singing along to the radio and the next minute I was in floods of tears, adding to the bowl of hot, soapy water. Enough was enough and I had to let it out. I have been taking it all in, listening, reading and watching day after day the horrific events that having been unfolding in our world. I have been praying on my own, at 11am every day, prompted by my phone alarm for the last few days with a few hundred other people who need to do something but don’t know what, so… we pray. I’ve also been praying with my daughter at bedtime. Our usual bedtime prayers are to do with a good night’s sleep, her brother’s health and for a good day tomorrow. Tonight I added into the mix praying for people who don’t have homes and who are going on long, difficult journeys to find a place where they are safe. Basically, the Syrian refugee crisis simplified into 3-year-old terms. Obviously, I didn’t want to go into detail about what’s going on as telling a 3-year-old horror stories before bedtime is asking for nightmares that night. As her parent, I need to protect her. She doesn’t need to know these kind of things just yet.
It then dawned on me that the photo I had seen today of a dead boy who had been washed up on the shore in Turkey was of a 3-year-old. A 3-year-old just like my daughter whose parents, like me, were just trying to protect him.
So, as I cried, I pictured me and my girl on a journey. I tried, with the knowledge I have from the media, to imagine us leaving from our temporary home in Turkey, packing our bags (if we even had time) and talking about where we were going. To imagine her being born into this horrific world having heard the sound of gunshot in my womb but I would fill her with hope that we would be going somewhere brighter, better, safer and quieter where she could have fun, play outside with other children and maybe even go to a school where children speak a different language to her. I would reassure her that she would be absolutely fine on this journey because we would be sticking together and, with me, she’s always safe. I would make sure she took her favourite toy and remind her that she mustn’t lose it because there would be no going back. I would say to her that there would probably be lots of us going together and it would be busy, there would be times when we might get a bit tired but I would carry her some of the way. I would let her fall asleep on my shoulder during those times and stroke her hair, just like I always did so that she had a bit of ‘normal’ in the craziness of it all. I would make sure she knew she had to eat well whenever we stopped for food because it might be a long time before we ate again. I would try my very hardest to remain calm, upbeat and happy so that she wouldn’t sense my complete fear, loss of control and total uncertainty that we would even make it. I would tell her how much fun it would be journeying from one place to the next, listening to people speaking in different languages, seeing how they dressed differently. I would explain that the first bit of the journey was an exciting ride in a boat.
I would queue up, holding her hand tightly, talking with her about all the things we will do when we get ‘there’ and we would watch as the others got on board, giggling together as the boat wobbled and people nearly fell over trying to sit down. We would step on and I’d look at her with a big grin and say, “This is it! We’re really doing it!” and we would talk about how long it would take. She would probably talk about which creatures we might see in the water on our way and she would joke and say, “I hope everyone can swim in case a shark tries to get us!”. We would set off and chat with the others on board when we felt like chatting and the rest of the time we would cuddle and look out to sea.
Then we would both sense it. Me before her but she would be so used to the sound of fear creeping into my chatty voice it wouldn’t take her long. I would hold her tightly as the boat started filling up with water and people around us began panicking as the waves crashed over the top of us. She would cry and scream, telling me she didn’t like it anymore and wrap her arms around my neck and her legs around my waist. I wouldn’t be able to keep upbeat anymore in our conversation, I would just tell her over and over again, “It’s okay, I’ve got you, you’re safe with me. Just hold on and we’ll be okay. I can swim. It’s okay.” I would be wishing that we were in a better boat, one of the bigger ones, or that we had set out when the sea was calmer, or that I had given her swimming lessons, or that we weren’t born into the lives we were born into. We would run out of time and suddenly we would be neck deep in the sea, clinging onto each other in the freezing cold ocean. I would start to lose feeling in my feet and my legs, I would feel so exhausted but know that I just needed to keep moving, keep swimming, but which way? We had hardly been in the boat that long. I would struggle to keep her above the water whilst keeping on swimming and would notice her little lips start to go blue so I would know we needed to move quickly. But my energy, where would my energy come from? She wouldn’t be talking now, she would just look at me, fix me with a glare with those big, round eyes and not look away.
And that would be it. Something would happen, in that moment where our eyes were fixed on each other, where every bit of trust we had ever built up from day one, where every promise I had told her was sealed away in her memory, I would lose her. Just like that.
And he was lost.
Just like that.
3 years of life, a lifetime of possibilities ahead, gone in a final, desperate attempt to find him a better life.
We will never know exactly how that little boy drowned, the conversations between him, his mother, his brother (both of whom also drowned on that boat) and his father who survived. We cannot begin to imagine the panic and the utter fear they all felt. However, we can imagine exactly what his parents tried and ultimately failed to do: To keep him safe, to give him hope for a brighter future and to reassure him they would all be fine.
That’s what we all do, right?
I am able to protect my daughter from knowing about this horrendous story and I have the ability to keep her ears and eyes away from something that I think may worry her and cause unnecessary anxiety in her. His parents had no choice. This story was their reality.
Let’s please not allow this little boy’s fateful journey to be forgotten. There will be so many more children putting their trust in their parents as they set out, right now as you read this, believing that they are really going to make it, stepping into tiny boats, squeezing themselves into hideously packed vans and lorries, holding on tightly to their parents who have promised them safety.
Trying to imagine their journey was surprisingly easy. I have never experienced anything like what I think that little boy and his family went through but the thing that made it easy was simple: We are all humans and 3-year-olds are not that different to each other. They all love a journey and most of them completely and utterly trust their parents will keep them safe. We are humans reading about, watching or listening to people tell us about other humans in a different part of the world, doing things we are pretty certain we’ll never have to do in a million years.
We are not that different. We were just born under a different set of circumstances. It could have been any of us.