Those of us that are the parents of a child with additional needs, or who support a child with additional needs, so often put so much of our time, energy and focus (and rightly so) into helping that child or young person to thrive, to engage with the world, to develop as fully as possible, to be a part of all that we do…

It can become all consuming, demanding much of our conscious and unconscious energy as we do all that we can to make a difference.

But for many of us, our child with additional needs or disability is not our only child.  We may have another child, or several others, all of whom need love, nurturing, care and support.  In our case we have Phoebe, who at 19 is two-and-a-half years older than James and has grown up for most of her life in a home that includes a child with significant additional needs, and all that that brings.

This is an open letter to Phoebe, and to all the brothers or sisters of children with additional needs or disabilities…

“Dear Phoebe,

We love you, you are very, very precious to us and we are enormously proud of you for being the fine young woman that you have grown into.

This simple letter is just a small way of acknowledging all that you do, often unnoticed and sometimes unthanked, to support your brother and us…

You have often been a junior carer for James, helping out with a range of support tasks that help to keep the wheels on our particular family bus.  You are great at spotting when James is starting to get distressed about something and you either let us know or, usually, will just deal with things yourself.

You’ve cleaned up stuff that you would rather not see again (but probably will), you’ve got up to come to help in the middle of the night if James is having a meltdown, you’ve watched endless episodes of Postman Pat or Percy the Park Keeper with James, helping him to choose the next video to watch.

You’re also great at calling us out when we’re letting James off lightly for something he’s doing that is less to do with his Autism and more to do with being a 16-year-old who is pushing boundaries!

But you’ve also missed out on a lot of things that many young people take for granted.

The times we’ve had to skip going to something, or come home early, because James is struggling… Going out as a family is that much harder when an unpredictable younger brother may do something that either means we have to abandon our plans or keep within a small set of activities that we know James can cope with. We can’t just decide to go out to the movies, or for a meal, on a whim as most families can!

We tend to invite people around to our house rather than visit, generally because it’s easier for James when he has the familiarity of his own den, his own things, and we’ve got everything we need to support him; whereas you might have liked to go somewhere different, anywhere different, for a change!

Even family holidays can prove unpredictable, with a simple trip to the beach or to some gardens being fraught with uncertainty!

As parents, we were able to understand a little better at diagnosis what having a child with additional needs would mean (although in reality we still had everything to learn!)  For you, who were five at the time, it just meant your brother was a bit different to the brothers and sisters of your friends.

As you grew up you noticed the differences more, asked more questions, learned more about your brother, were affected more by living with him.

In all of this, you have rarely complained (although you have your moments!), you get on with life and the challenges that being the sibling of a brother with additional needs brings.

There are times when you mention that all of our time and energy seems to be focused on James, and that you don’t get enough of our time and focus, and that’s something for us to do better at… to learn from and to change.

But we are so incredibly proud of you, Phoebe, for the well-rounded, caring, thoughtful, intelligent young woman you have grown up to be.

There are many thousands like you across the country, who quietly cope while their brother or sister is having a difficult day.  Thank you for being such a wonderful daughter and such an inspiring and caring sister; we love you more than we sometime show, and more than you will ever know.

With love,
Mum and Dad”

Whether we parent more than one child, or whether as children’s and youth workers we care for them in other ways, let’s celebrate what a wonderful contribution they make to the world, how hard it can be for them sometimes, and make sure that we love, nurture and care for them, thanking them for all that they do.

Leading up to her tonsilectemy my daughter would ask about it every night. I tried to help her feel calm and give her time to ask questions. We would talk about how she would go to sleep and when she woke up her throat would hurt. Everyone told her how many popcicles she would eat and how much ice cream.

As if cold treats would be an equal trade for wading through a groggy anesthesia and then days of pain medication that made her feel like a zombie and tasted disgusting.

And hurt her throat to swallow!

No one told her it would be difficult to drink ice water or that she would get tired of only being able to sip on apple juice because dark coloured juices could be mistaken for blood if she did in fact vomit early on post-surgery.

No one told me that I would flash back to the hall in the hospital where my son barely survived his traumatic birth when walking with my daughter to the pediatric ward. That hall seemed so much longer and wider in my memory than in our recent visit while back in London (UK).

It was the first time returning after the last time we left; finally bringing Sebastian home after 16 days in the NICU. No one told me that I would remember the first time he was put under anesthesia and the look of fear and confusion in his eyes as he went under.

No one told me what it would be like to instead see my daughter put on a blue cap and walk through a door and then imagine her walking down the hall to the OR, holding the nurse’s hand to be put under anesthesia.

Without even turning to look back and later nodding her head when I asked if it was scary to go back there without me.

I’d done this loads of times before. How many times had our son, with cerebral palsy, been put under anesthesia for dental work, g-tube surgery or MRIs for his seizure disorder. How about hip surgery? That one lasted 8 hours. I didn’t even know how long a tonsilectemy would last, though I was fairly certain it would be under an hour. And I was right.

Forty-five minutes later, hardly enough time to drink a large cup of coffee and eat a pastry, the doctor would come looking for us; all went well and Tallula would be in recovery shortly. The waiting room volunteer would take one of us to see her. It felt strange that only one of us could go as we both always went for Sebastian.

Leading up to Sebastian’s hip surgery we watched a video on the hospital website and visited with the anesthesiologist.

We made sure they asked him what flavour anesthesia he would like, and he would respond with a yes by smiling and vocalising and a no with his eyes up. We made it to strawberry and he was happy. Tallula attended a Child Life class in a hospital playroom with a half dozen other children who would have the same or similar surgeries around the same time. They were able to ask questions and look at photos of a puppet waving goodbye to her ‘parent’ at the hallway to the operating room.

I sat in another room with other parents watching a video to explain a process with which I was already too familiar. But this hospital didn’t allow a parent to go back for anesthesia, although it was what we took turns doing for each of Sebastian’s surgeries. Ok, after two I made my husband do the rest. I just couldn’t keep doing it. But I still didn’t want him to feel alone or afraid. I was worried about Tallula feeling the same.

Sebastian does not have the ability to voice his concerns, fears, or ask questions about surgery and hospital stays.

We teach as much as we can about the process so it feels comfortable and not scary, asking a lot of yes and no questions as we go to help gauge how he is feeling. Tallula has all the words but when she woke up groggy and confused from her surgery, she still pointed to her body and said ’Is it done? Where are my tonsils?’ I thought she meant in general and I began to explain that the doctor would have done something with them and she waved her hand and said ‘No, where are they in my body?’ Had I actually failed in telling her that her tonsils were in the back of her throat?

Had we all failed in explaining her basic anatomy for the surgery? Did we just assume she knew from listening to our conversations about strep throat and popcicles? That she would ask the right questions beforehand? Or was she just so disoriented from the anesthesia, she couldn’t remember?

It was a new experience watching my daughter wake up and reach for me to cuddle with her.

She tried to pull me over the bed rail until I flagged down a nurse and convinced her to lower it so I could lean in and cuddle with my six year old daughter; the little girl that still needs me next to her to fall asleep at night. I read to her as she floated in and out of sleep. She swallowed hard and coughed. I held my breath each time, fearing she’d vomit up blood, as I have heard is possible. She did not.

I texted my husband updates and looked around a recovery area that would have been big enough to accommodate him and sighed because it wasn’t allowed. Once she’d kept her first popscicle down we were moved to the next phase of recovery, where her dad could join. There would be no overnight stay.

There would be more reading and popcicles and then a visit from the Child Life volunteer. Tallula would take the tv remote and find the cartoon channels, English or French, it didn’t matter. The remote next to her ear, bringing me back to Sebastian’s hip surgery recovery days that lasted much longer than the four hours we’d be required to stay here.

We returned home to a freezer full of ice cream and popcicles of every flavour and Grandma ready to give Tallula all the extra attention she deserved.

It was her turn to have all the special food and all the cuddles on the couch. Sebastian couldn’t wait to see his sister when he arrived home from school, greeting her with a hand made card with well wishes from school mates and a joke recorded on his step-by-step switch.

It felt good to be home. All of us together.

Let the recovery begin.

November 2018 marks a personal milestone for us as a family – Our Freddie, who has Down’s Syndrome, celebrates his tenth birthday.

So, this month I have written a series of three related posts reflecting on this: the first post is a letter from me to Freddie in which I tell him about his early days and compare them to where we are now.

The second is an open letter to the obstetrician who looked after me when I was pregnant with him, in which I share with her some of the things I have learned during my first decade of ‘lived experience’ as the mum of a child with Down’s Syndrome.

The third post looks forward, towards what the next ten years may, or may not, bring us.

I have been mum to a child with Down’s Syndrome for ten years.

Like most families on this milestone anniversary, we have done the presents, the cards with badges, the cake and the balloons. I have enjoyed looking back over your first decade of Freddie’s life, though it has also made me very emotional.

We have been lucky. After a very rocky start the road has gradually got smoother and smoother with barely a bump along the way.

Long may that continue.

Looking forward to what the next ten years may bring us — as he progresses from being a child to being a young adult – is not so easy, and I dare not examine too closely the emotions that are brewing in my subconscious.

Most families imagining their child’s second decade will harbour a set of broadly similar expectations – educational attainment, employment or university, maybe flying the nest, first boyfriend or girlfriend and all the emotional roller-coaster that young relationships entail – and if any of these expectations is not fulfilled they might well feel disappointed or even cheated.

But parents like me cannot look forward with any confidence to these particular milestones. Dependent upon our children’s particular needs, characteristics and abilities, some of them may not be realistic, others might be possible, in an ideal, more open-minded and inclusive world.

But we are a long way from living that particular dream.

I began Freddie’s first decade feeling optimistic, thinking that the world was more accepting than ever before of disabled people; the 2012 Paralympics was a high point of positivity.

But, of course, people with learning disability are viewed very differently to glamorous young para-athletes, and, worryingly, over the past ten years I have become aware of a deterioration in attitudes to those who have, or are perceived to have, intellectual disability.

In some cases even physically disabled people are guilty of this kind of ableism, — citing their right to equality on the grounds that their particular disability doesn’t mean that they’re ‘not all there in the head.’

I cannot tell you how much this dismays me – no, it’s not just dismay: it makes me really, really, angry. A person’s right to equal treatment rests only on the fact that they are a human being.

It seems like prejudice against learning disability is the last refuge of the bigot.

I’m not scared of much, but the current ugly mood towards the vulnerable and disenfranchised that seems to be creeping over the world does have me rattled. But on an individual, day-to-day level I don’t dwell on it too much.

We haven’t met with much negativity in our personal lives so far, and anyway, I’ve always been a scrapper with a tongue like a chainsaw. It’s not a nice aspect of my personality, but it can be a useful trait to have in reserve should you ever need it. My current, overriding concern is the imminent transition to high school. Freddie is now in Year 5.

One thing that we know for certain is that Freddie will go to a specialist high school.

Once upon a time we had hoped that he would go to mainstream school, at least for his primary education. But that proved to be the worst option locally, so we enrolled Freddie in a specialist primary that has a good reputation and good links to the wider community, and where all his needs would be fully supported by the school environment.

It has worked out well for us — because he doesn’t need to have a 1:1 there he has learned to stand on his own two feet in a small group, he is happy and making good progress. I wish he could stay at the same school for the whole of his education, because I don’t want to rock the boat.

But, of course, he can’t stay there: the transition to another school must happen, and it will be very disruptive for him, he hates change.

At the very least it will cause a temporary deterioration in his behaviour, if the transition is traumatic, it could even trigger regression. I can’t bear to think of Freddie being distressed or traumatised, or of him losing his hard-won skills.

I had better stop putting it off and start researching, and making overtures to, the two schools I have to choose between, so that I can make a decision, to enable his current school to begin to prepare him for the transition as soon as possible.

We hope it will be possible for Freddie to continue in education until he is twenty-five. Beyond that I dare not look.

If I could freeze time right now, I would.

But children with Down’s Syndrome do not remain children forever. They grow up, and have the same hopes, desires and ambitions as any other adult. What Freddie’s goals will be, and how far it will be possible for him to achieve them, we do not yet know.

But if there is one gift he has that has rubbed off on me, it is the tendency to live in the moment. From now on I will try to look no further forward than our bedtime snuggle.

The past is gone, the future is not guaranteed – the present moment is really all we have.

Life with my two boys is very full on; one of my boys has SMA and the other is on the autistic spectrum.

My days require planning, organisation, a sense of humour and an extra pair of hands!

Most days this extra pair of hands is the hands of my wonderful parents so here’s my open letter of thanks for all they do to get us through the everyday:

To Mum and Dad,

Thank you for being there for me and my boys day and night, for the making mad dashes to our house in the middle of the night so we can rush off to hospital in emergencies and for helping out in the mornings with the school run.

For the afternoons where you keep me company so I’ve not had to spend the day in the house by myself and for the evenings you spend with the boys so me and Craig can actually go out and remember who we are.

Thank you for answering the phone any time with “We’ll be there in two minutes” and for cancelling your own plans to help us when our schedule has been thrown into turmoil.

Thank you for the dinners that are cooked when our hospital appointments run late, the basket of ironing that has been done while I’m busy doing physio routines, the floors that are mopped when I’m answering the dozens of phone calls and the washing that is sorted when we have a sickie day.

Thank you for learning how to do tube feeding so that I can have a break sometimes, for helping with physio, for researching and giving me ideas on how to deal with autism and for adapting everything so that the boys still do all the normal things that boys do with their grandparents; the trips to the café, playing at the park, swimming, board games, reading stories and camping out.

Dad, Thanks for taking the time to help me with my biggest challenge yet – learning to drive a wheelchair adapted vehicle.

Thanks for fixing everything in my house – walls chipped by wheelchair wheels, shelving in the cupboards, breaks that have occurred from melt downs, adapting equipment, putting mirrors and televisions on the wall – I don’t think there’s anything you can’t fix!

Mum, thanks for being my sidekick at hospital appointments, for being the extra pair of hands and eyes I need when the two boys are together. You are the person who listens to everything and gives the best advice.

Thank you for being the person who brings sunshine to our days.

I don’t think I could ever thank you enough for all you do – we are so very blessed to have you as vital members of our team. Thank you for always supporting us, always believing in us and thank you for showing us it’s absolutely okay to be living our different kind of normal.

From me x

It’s hard to describe the feeling that you get when you are told your child is having seizures. It’s a myriad of feelings that you are left to sort through while you try and take in the new medical terms and medications.

I remember everything about that moment and how scary it was.

Despite the fact that my son sustained a brain injury while in the NICU, no one, that we can remember, mentioned that Sawyer would be more prone to seizures. To be honest, even if they did, we wouldn’t have guessed that he was having seizures.

We believe that if it weren’t for a routine phone screening with the neurology nurse, Sawyer may have not been diagnosed until it was too late.

We will forever be thankful for the nurse who set up the EEG “just in case” due to the description I gave her of some things Sawyer was doing.

I admittedly told several people that I didn’t believe he was having seizures and that they were just being cautious.

I went in with the feeling we would sit for two hours and go home. I was wrong. After forty minutes the nurse came in and stopped the test. She said that the doctor had ended the test and wanted to meet with me.

At that point I got worried, but was hopeful it was protocol. When we were put in a room the doctor explained that Sawyer had 11 seizures that were caught in that 40 minutes and that they were extremely concerned.

They said that they suspected infantile spasms and they are treated as an emergency. We were immediately sent to the hospital down the road and admitted. At that point I had called my family and husband to work out childcare for Sawyer’s twin sister Quinn and began to worry.

We were admitted to the hospital and immediately put on a strong dose of IV seizure medication

I still didn’t know what I was looking for and felt confused that my son could be having seizures. The nurses often times had a hard time determining if Sawyer was having a seizure without checking the monitors.

They were such subtle movements, which felt frustrating. We were taught to watch his eyes and try to determine if his movements were voluntary or not.

After 60 hours we left the hospital with strict instructions to document each seizure and report back. It was heart wrenching to watch not knowing if it was affecting my son negatively or not.

Fast forward a year and a half later and thankfully Sawyer’s seizures are mostly under control. Sometimes he has break through seizures when he is sick, but they are well managed at home.

About 1,200 children each year in the U.S are diagnosed with Infantile Spasms.

They are extremely rare and can be devastating if not caught early enough. This particular type of seizure is very hard for parents to recognize. It can be something often look like reflux or a normal startle and when it isn’t diagnosed early it can cause developmental delays.

We don’t know if the seizures or brain injury caused Sawyer’s delays. We won’t ever know for sure. He was having these episodes for 3 months before we got him in and we don’t know the effects on his brain.

The one thing that we can do now is continue to raise awareness for Infantile Spasms.

You’ll never regret asking to speak with a neurologist or getting an EEG.

Heartbreakingly, at least 60% of children with additional needs are bullied (source: Ability Path).

With some 2.5 million children and young people in the UK having an additional need of some kind, that’s 1.5 million who have experienced bullying…

One is one too many, 1.5 million is an absolute outrage!

When we think about childhood bullying, the stereotypical environment is bullying at school or in the street.  We may also think about online bullying, a huge problem for many children today.

But do we think about where else children with additional needs, and their families, are being bullied?  It can happen anywhere, in the supermarket, in the cinema, in the park during a family day out…  anywhere!

Surely as a society we should be more understanding, more tolerant, treating everyone with respect, however this is often very far from the case.

Bullying of children with additional needs, and their families, happens all too often…

There are lots of ways that these families, and their children, are treated badly, sometimes bordering on and stepping over the line into bullying, and it isn’t possible to include them all here, but these poor behaviours can often fall into three areas, all linked, but all very hurtful…

The ‘Tut’

A sound that is so short, but which can leave a lasting impact.

People tut when they disapprove of something, or someone; when they wish to show distaste or dislike.

A ‘tut’ can be like a dagger to the heart of a family of a child with additional needs.  It condemns, it judges, it articulates opinion in a cruel and harsh way.

When trying to support a child who is overwhelmed and having a meltdown, the ‘tut’ says to parents “You have failed to control your child and now you are inflicting their issues on me, and I disapprove…”.

That simple sound can be so hurtful… but it is often accompanied by…

The ‘Look’

A harsh stare often follows the ‘tut’; a glowering, accusatory, frowning, purse lipped look that make families with children with additional needs want to hide from the glare.

It reinforces the sense of helplessness and hopelessness that the family will be feeling as they try to help and support their child, just at a time when what they really need is kindness and understanding.

A friend of mine who experiences this all too often refers to people like this as ‘The Meerkats’

She says that when her son is having a meltdown in public, all the heads swivel round and stare at them just like the meerkats do.

She makes fun of it, but there is a serious and hurtful intent to these looks… and then often the third part of the bullying ‘triple whammy’ comes swiftly along…

The ‘Loud Comment’ 

After the ‘tut’ and the ‘look’ often comes the loud comment, ostensibly aimed at someone nearby, but made loudly enough to be heard by the family (and probably everyone else within earshot!)

It can frequently start with “Well…” and continues with something like “if they can’t control their child they shouldn’t bring him into the supermarket…” (control is just about the last thing possible during a meltdown).

Or “I wouldn’t put up with bad behaviour like that in the cinema if she was my child” (this isn’t bad behaviour, it’s could be a response to sensory overload).

I could add many other examples here, perhaps including the ‘Smug Smile’ when the family drag their distressed child out of the shop/cinema/play area etc. so that they aren’t subjected to any further abuse.

Many of us have been there, seen people do one or all of these things, seen the impact it has had on families and their children, on us.

Does it break your heart?  It certainly breaks mine…

We need to be better than this, to model a better way, to make a positive difference to that statistic.  It needs change, change to come from the top, from those with positions of responsibility in our communities and in society as a whole.

Good responses need to be praised and poor behaviour needs to be challenged.  If someone lit up a cigarette in the middle of Tesco’s they would soon be told to stop…  we need the same challenge to be given to someone bullying an additional needs family.

We need to see the ‘tuts’ turned to offers of support and help,  the ‘look’ to become one of friendship and encouragement, the ‘loud comment’ to be “how can we help you?”

So, let’s follow this approach, let’s not wait for it to just happen but let’s lead it ourselves, and let it change us, change society, and change the experience for many families with children with additional needs…

Hope keeps us focused, keeps us strong.

Personally, hope gives me purpose.

Helps me through the hard and darker times.

Whenever I feel myself start to get lost in all that is being thrown at us. I try to ground myself. Everyone has different coping mechanisms and some are healthy while others are not.

Mine are a mixture of both.

I make time in the evenings when the children are asleep to do something little that makes me happy.

A bubble bath, reading a book, savouring my favourite chocolate and sometimes having a nice large rum and coke.

Some days I am too exhausted for even the little things.

I head to bed early, full of the day’s events and thoughts weighing down my shoulders and I try my best to drift off to sleep. To forget for a while all that troubles me.

My biggest issue is bottling things up.

That’s my main coping strategy, it’s not healthy and it’s not to be encouraged. But it’s what gets me through.

A couple of times a year it will backfire and everything will bubble to the surface, demanding to be heard. And for a while I will drown, waves of emotions crashing down on me like sledgehammers.

Recently I started having counselling.

I recognise that I need to adopt a better way of dealing with my emotions, yet my life is just not compatible with this approach it seems. Appointments have been rearranged and cancelled due to my twins’ illnesses.

My strength and resolve to tackle some deep-rooted emotional stumbling blocks regarding Violets diagnoses has faltered and I am now at the point of abandoning this route for now.

So, a new journey is about to start.

I am very self-aware, I know I need to be gentle with myself. But I also need to be strong and push through some of the more toxic approaches I sometimes adopt.

Talking to my husband about my inner most fears and emotions had never troubled me until we had our children.

I feel we have been through a war zone together, both traumatised and changed by Violets evolving medical journey.

It’s those thoughts and fears I struggle to share, because I know he feels them too.

We are a balancing act of one half of our team being strong while the other half can have a moment or two to be weak.

Sharing the momentous load and talking often about our worries is what gets us through.

So, I will continue to enjoy the little things, try to limit the bad things and take pride and strength from sharing this turbulent but beautiful journey with the love of my life.