A Letter To Nell Alma On Your First Birthday

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Nell Alma,

Your name quite literally means ‘bright soul nourisher’. You have no idea how much time we spent choosing your name and obsessing over its various meanings. Of course we hoped you would live up to your name but we didn’t realise quite how much you would do in the short 12 months of your life so far.

Before you were even conceived, you were prayed for by your big sister every single night. She longed for a baby sister to love and play with and she trusted that God was listening. Maybe she just wanted a baby sister like most girls do, or maybe her heart was aching a little from having a brother with whom she knew she would never be able to have a conversation. You were born into a freezing cold November day and we were snowed in almost instantly, giving us plenty of opportunities to snuggle up with you. Your love of cuddles began then. Twelve days after you were born, your brother was taken into hospital inconsolably screaming in pain with his temperature rising, resulting in a febrile convulsion. You lay there amongst the chaos, sleeping in your Moses basket blissfully unaware while the paramedics checked him over and took him away. You kept me company at home with your newborn cuddles, calming my nerves and keeping me focused on making sure you were alive and well while your daddy was in hospital with him.

But it’s as though the bombs just kept on dropping one after the other that year, each time our souls felt heavier, less hopeful and a little darker. Things kept on happening that were out of our control but you remained a constant throughout. You cuddled, smiled, giggled and kept us company. You had no choice as an exclusively breastfed baby but to join me on my daytime shifts in the children’s ward during the harrowing time your big brother was diagnosed with epilepsy. You lay there kicking and smiling on the pull down bed while he sat next to you in the hospital cot having drop seizure after drop seizure. You were oblivious to it all and had no idea that this wasn’t how most three month old babies spend their days. Once you perfected the art of crawling, you followed us around and adored us unconditionally, all of us, including your big brother who continuously grabbed, slapped and kicked you. Your big sister, who you utterly idolise, gained a best friend that year and also the biggest fan she’ll ever have. You and daddy seemed to develop a special code involving smiles and sniggers that you insist on doing only with him and I know for sure you’ve brought ray after ray of sunshine to some of his greyer days this year. Even though your night wakings drove me crazy, I count it an utter privilege to have kept you alive with my milk and I will always cherish those extra cuddles in the dark, just me and you. You have quite literally nourished our souls this year. You may never know the ins and outs of the first year of your life, the heartache, the hospital trips, the difficult conversations and the tears. Maybe one day I’ll sit you down and tell you all about it.

Either way you need to know this, you are an absolute gift from God. He knew we needed you and he knew how much brighter our year would be with you in it.

He also knew something I didn’t realise until I had the privilege of mothering you this year, baby Nell, and that’s just how much my poor, weary soul needed to be nourished by allowing myself once again to just sit back and enjoy watching a beautiful baby of mine meet their milestones. You see, I love your big brother crazy amounts but his first year was a year of questions and worries for me, which we now know was down to him being a bit different and having Angelman Syndrome. I never got to simply enjoy his first year and I didn’t realise until now but I have been reeling from it ever since. By just being you, coming into our crazy world of ups and downs, you have restored my hope and healed my heart.

Now, my beautiful, bright one year old, here’s where the real fun starts. You’re finding your feet, finding your words and making your own little way in the world. Thank you for being more than we could have ever hoped for or imagined and being the best little Nell Alma out there. Now go forth and nourish.


I Am More Than A List Of Things I Can’t Do

IMG_7434.JPGI have just emerged from a long, dark tunnel of completing Rufus’s DLA (Disability Living Allowance) form. It is a dark place to be but I got there in the end. Three evenings and one morning later, the form was completed, the cross referencing was done, the endless photocopying of medical reports was finished and the envelope was sealed.

The only way to fill in a DLA form is to focus on what your child CAN’T do so that you can highlight exactly what level of need your child requires so that he/she can be allocated the correct amount of DLA. As parents, we are our children’s greatest encouragers so we try to spend our days focusing on what they can do by themselves or with help and we just buckle down and get on with doing for them what they can’t do by themselves. But the way to fill in this 40 page form is to spell out in very raw and real terms every single aspect of daily (and nightly) life that our children need help with. And hours upon hours of writing like this kind of sucks.

So to return some balance to my wellbeing this week, I decided to write a list of all of the things Rufus can do. I would wholeheartedly recommend this exercise to any parent filling in their child’s DLA form. Set aside some time as soon as possible after you have sent off the form and restore some of the hope, positivity and fun which you temporarily had to put to one side while completing the form. Then go and enjoy your child because they are SO MUCH MORE than a list of things they can’t do.

Here is the list.

1. Every single morning, no matter how badly I have slept or how long I have waited for someone to get me out of bed, I give my mummy and daddy morning hugs like they’ve just returned from a 40 day excursion to the North Pole.

2. I patiently stroke my baby sister gently on the head while mummy or daddy hold my hand, even though every bone in my body would love to grab her and squeeze her like a stress ball.

3. I lean my head in towards my baby sister’s head close enough so that we are touching, stay there for a few seconds while I smile at her and make my happy noise and that’s my special way of giving her a cuddle.

4. I have a way of getting my big sister out of a grump even when our mummy and daddy have tried everything and have given up. Sometimes she whines and cries after a long day at school or if she’s not allowed to have something she wants. I always start with getting my magnetic grin right up in her face, then start giggling and sometimes she just magically forgets what she’s cross about and we end up playing together on the floor. She lets me get a good pull on her hair and rolls around with me for a bit. I think this somehow chills her out.

5. I can amuse myself in the car by laughing hysterically as we drive past people wearing hats or hoods, which, in my mind, are only ever worn for my own comedy value.

6. I can initiate a game or activity by picking it up and giving it to (or sometimes tapping it on) another person. Sometimes ‘they’ don’t let me watch tv when I continually give them the remote so I try giving it to the tv. It hasn’t worked so far but I’ll keep persisting, nevertheless.

7. I let everyone in the room know I’m excited by a film or tv programme by sitting as close as I can to the screen and tensing all of the muscles in my body with excitement.

8. I draw people in for a cuddle with with my huge smile and my reaching arms then, before they realise what is happening to them, my reaching arms have turned into grabby hands, clinging on to hair, glasses, earrings, scarves, whatever I can to draw them even closer and with all my might and every ounce of love I can muster I give them THE MOST LOVING EMBRACE KNOWN TO MANKIND.

9. I have a way of making you feel like you are the most important person in the world by seeking you out in a crowd, flashing my gorgeous grin at you and giving you that knowing look of ‘I know you, I know you know me and I know we have a secret bond.’

10. I am a whizz at finding and passing objects in the bath when people ask me for them and I particularly enjoy filling cups with water and pouring them out of the bath, mostly in the direction of my daddy or my baby sister.

11. In a room full of my toys, I can seek out the one object I am not allowed to touch or play with and whilst investigating or mouthing it, I have a sneaky little giggle to myself because ‘they’ didn’t think I would find it.

12. I am THE BEST eater for my age. I eat anything and everything that is healthy and my appetite is out of this world. I can feed myself tiny things like raisins and chocolate drops and I can also eat an entire apple or pear all by myself. I can spy a crumb of food from miles away and my parents call me Inspector Gadget due to my incredible reach. Waitresses and the general public haven’t quite cottoned on to my reaching powers yet.

13. I have fine tuned my bottom shuffling skills which I’ve been working on for the last three years. I am super speedy and can bottom shuffle without putting my hands down to help propel me – something even my mummy can’t do but it’s funny watching her try. She says my core muscles must be amazing because I can also sit up from lying down without using my hands to help me get up.

14. I am getting good at pulling up from a sitting to kneeling position, usually motivated by mealtimes (where I pull up to my special chair), screens (when someone has left a phone or iPad on the sofa) and cuddles (when my baby sister is having a cuddle and I want in on the action).

15. I can focus on my PODD book or PODD page when my grown ups or my sister are trying to tell me something. I don’t focus for long because it’s also usually a good opportunity to sneak a quick cuddle or hair pull but I’m starting to get more interested nowadays rather than just pushing the PODD book away like I used to.

16. My little legs have super strength in them and know exactly what to do even if my mind hasn’t quite caught up with the balance and confidence for me to be off walking on my own yet but if an adult holds my hands I can go pretty much wherever I want which is usually in the direction of food, my favourite people or my next door neighbour’s dog.

17. I always get a feeling for when the general public are miserable or need cheering up, usually in hospital waiting rooms, supermarkets or walking down the street and I use these opportunities to perfect my excellent laugh. Sometimes, once I start laughing, I can’t stop which makes mummy or daddy laugh too, then other people smile and sometimes join in with the laughing even if they weren’t feeling happy before. I think this is one of my best skills. My mummy and daddy call it ‘bringing the joy’.


IMG_6096It’s safe to say I’m not the only parent in the world who goes into panic mode when they get a phone call from school or nursery. This week it was nursery’s turn and the mild panic set in almost immediately. Add to that his key worker’s opening line being, “I wanted to let you know Rufus has been showing some unusual behaviours this morning,” and I was already coat on, out the door before she had finished her sentence.

The rest of the day revolved around keeping a close eye on Rufus at home until we made The Call and paramedics arrived. I had a feeling what the ‘unusual behaviours’ were but until I had seen them with my own eyes I absolutely refused to believe what I thought was happening, even though in the back of my mind I just knew.

Rufus does lots of unusual things – he’s a quirky kid and he likes to keep us on our toes. Based on what the nursery staff said, he could’ve been tired, he could’ve been looking intently at something in the corner of the room, he could’ve been smiling in a weird way, he could’ve just not wanted to look at them while they were trying to get his attention for over a minute, he could’ve just wanted a lot of cuddles. They could’ve just got it wrong.

So I brought him home, we made our own judgement call as we looked at our tired, cuddly boy and we put him down for a nap. And he napped. That should’ve been our first warning sign. The boy does not nap. Ever. We put the video monitor on and I sat glued to it as I drank tea and fed the baby. I watched him fall asleep, listened to him breathe and went up to check on him numerous times. Maybe he was just sleeping off a really bad night or maybe he was coming down with a cold. One and a half hours later he woke up and Dan brought him downstairs. And that’s when it happened. That was the moment I could no longer pretend or deny what I had dreaded most.

I sat next to him on the sofa while he had a seizure.

My poor boy fixed his eyes on the back of the sofa and I could do nothing in my strength to snap him out of it and make him look at me. I lifted him into my arms like a baby, held him, stroked him and talked to him as I watched his beautiful blue eyes with those long black lashes rhythmically blinking over and over again as he stared into the corner of nothingness.

At some point while I was holding him I heard myself shout, “Dan, he’s having a seizure!” And for the first time in my life I had admitted what I never wanted to say.

See, since diagnosis day we have known all along that seizures were likely. In fact 80% of children diagnosed with Angelman Syndrome suffer with seizures. But there was always the chance that Rufus would fall into the 20% category. And this is what we had hoped for, this is what we and countless others in our lives had prayed for and actually started believing. The onset of seizures in AS averages around 18 months – 2 years so the older he got, the less likely it was. And so we carried on with life believing we were out of the woods. Illness came and went, temperatures spiked and ‘febrile convulsions’ occurred a handful of times but never did a medical professional give the label of ‘seizures’. Until that day.

As the paramedics went about their checks we held our sleepy boy in our arms as he drifted in and out of awareness, he came round, drifted again, smiled and even bum shuffled over to their equipment and had a look at all the lights and buttons. I packed a hospital bag and off they went with their blue lights flashing, Dan, Rufus and the paramedics.

No one prepares you for how to deal with a trauma when you have a six year old and a baby to look after and keep everything normal for. Thankfully the baby is blissfully unaware of anything. As long as she has a constant supply of milk and cuddles then nothing else matters. But it was only 4pm and I had the rest of the evening to remain calm, constant and chatty with my six year old daughter. My world had just been turned upside down but hers didn’t need to. So we watched a movie, ate biscuits, chatted, laughed and had a long, drawn out cuddle and chat at bedtime. She told me she was going to be brave and I told her she didn’t need to be. She could be sad, worried, cuddly, ask all the questions she needed to but she did not have to be brave. So we talked about her worries, I reassured her that she and her sister wouldn’t have seizures and she switched her bedroom light on and off repeatedly to try and understand what was going on in Rufus’s brain. We prayed for Rufus and then I went downstairs.

And I cried. For the first time I didn’t need to put on a brave face. It was just me and the baby. And God. A God who I had prayed to many times before and asked to protect my boy from this ugly side of Angelman Syndrome. A God who I believed had heard my prayers and only had my boy’s best. And I told him I was angry, I told him I felt let down that the God who created Rufus could have easily prevented this from happening. And I turned my back in a strop and slammed the door on him for the next 48 hours.

Within that time Rufus had another seizure, this time a tonic clonic seizure where his body was jerking too. He slept no more than 1 hour that night while Dan sat with him in hospital and the next day I brought them both home, tired but on the mend from this hideous episode. We began to tentatively use the word ‘epilepsy’ and reach out to others who had already walked the walk. And then the prayers began flooding in. Within minutes of Rufus’s seizure at home I sent a rushed whatsapp message to a small group of faithful friends and the news spread like wildfire. During the time in which I had slammed the door on God, a prayer chain had been set up and numerous people within our church stood in the gap and pledged to pray for us for an hour at a time over the next few days. In fact I know as I write now there is someone praying for us. Last night I opened the door a jar and began to chat to God about how to go forward in trusting him. We still have a long way to go.

I cannot wrap all of this up in a satisfyingly neat little blog post because it is messy but I do know this: When my six year old daughter has a meltdown, when something goes wrong and cannot be fixed, she will often shout at me saying, “It’s all your fault. You’ve ruined it and I’m really cross with you,” even when I’ve had absolutely nothing to do with the chain of events. Why does she do this? Because she’s cross with the world and there is a childlike sense of entitlement that the person who brought her into the world has a duty to make sure everything in her life goes the way she wants and runs smoothly. Because I’m her North Star and I love her despite whatever verbal abuse she wants to throw at me when she doesn’t have the exact words or the understanding to explain why something hasn’t gone right but she just needs a safe place to rant. And she knows that when she’s done shouting, there’s the offer of a hug at the end which she always takes me up on.

Could God have prevented these seizures? Was this his fault? Was I right to be angry with him? Why do bad things happen to good people? I am not in a position right now to try and make sense of why this has happened. I may never be. But somehow under all these layers of disappointment and anger I still believe that God is good. I may be mad, I may be right but I chose to open the door and invite him to join in the conversation with me again, bit by bit. Why? Because He’s my North Star. He always has been and He always will be. Things have changed for us but He hasn’t. I read recently in a parenting book:

“For centuries, sailors have navigated the vast openness of the seas by finding the one star in the sky that doesn’t move. Even when everything in our lives feels out of balance and unpredictable, even when we have no idea what to do, or how things are going to turn out, we can always come back to our North Stars. No matter how far we have strayed, we can, at any point, choose to take a moment to get quiet and take a moment to orient ourselves back to what really matters.”

I know deep down that He loves me and he loves Rufus and He’s still good. Life is complex and sometimes really, really sh*t but He’s not. I know that the last few days are just a tiny part of a huge story. It doesn’t make sense but the dust will settle, the sun will shine and my boy will smile his famous smile again.


Changing his world… one milestone at a time

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“One more time!”
“I want it now!”
“It’s not fair!”
“Another go!”
“You’ve ruined the game!”
“No! Don’t stop!”
We’ve all heard those phrases time and again being whined, shouted and even screamed repetitively by demanding toddlers and wished they would just learn patience and acceptance. As parents of a non-verbal child, though, there is nothing we would love more than to hear at least one of those phrases uttered.
However, we have come to realise, sadly, that this is highly unlikely and so we spend our time modelling language in a variety of ways and helping Rufus find his own way of communicating what he wants and when he wants it. If we look close enough and wait long enough, eventually we see it.
I’m not even sure what this milestone is called but I’m pretty certain that we missed it by about 3 years.
To you, the photograph above is just a boy with an air pump. To us, this is HUGE. This is groundbreaking. For the last month or so, Rufus has been placing objects on surfaces and taking his hand away, rejoicing at the fact that they either roll off and drop to the floor with a crash or they stay where he puts them. For a few weeks now, he has also begun to place our hands where he wants them, for example, on his tummy to tickle him or on the back of his neck to stroke it. For as long as we can remember, when he is holding an object and we want him to pass it to us to show him what turn-taking is, we have said ‘give it to me’ or ‘put it in my hand’ and helped him understand what we mean by using the hand-over-hand method, showing him how to place objects in our hands and let go. Left to his own devices, these instructions are largely ignored but with assistance, the cogs begin to turn.
Today, out of the blue, something just seemed to click. We were hanging out in his bedroom and I was making him laugh by using the air pump to blow air on his hair, face, tummy, legs… as you do. I began to notice that every time I stopped, he picked up the pump and purposefully put it in my hand, took his own hand away, smiled at my hand and waited… as if he were requesting ‘more’.
We kept at it for a while and must have had this non-verbal communication exchange more than twenty times until something suddenly dawned on me.
We were playing an actual game together.
In the three and a half years of his life I don’t think I’ve been able to say, with confidence, that he has ever directly involved me in playing a game with him, nor have I ever felt so ‘normal’ in my parenting of him. So often he is either locked in his world, content playing with his toys on his own or he wants nothing but full on, 100% human interaction and not even the brightest, shiniest, noisiest toy can distract him. When we try to play with Rufus and his toys, our ‘norm’ is to do things for him, to him or alongside him and he is either interested for a few seconds, politely obliging or just apathetic.
Today marks the beginning of a change in how we can begin to play together. Now we are useful to him, not just in meeting his basic needs, but in making his choice of fun happen the way he wants it and when he wants it. By discovering that he has the power to place an object into another human being’s hands, not only can he make fun things happen over and over again but he can also request things, begin to take control of what happens around him and manipulate his own world.
The world is your oyster now, my boy, so the world better watch out.

Diagnosis: 2nd Year Anniversary


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.


Joy, regardless.

IMG_4714.JPGTomorrow 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.

Face Your Fears Part 2

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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.  


Face Your Fears

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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.

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PODD: Why would you not?

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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?