It Gets Easier…

When I first found a parents’ forum online, within days of Heidi being born, that was dedicated to those affected by HIE, I felt an overwhelming sense of relief.

We were no longer on our own, and we no longer felt like the odd ones out (anyone who has had a full-term, slightly chunky, baby in NICU probably gets what I mean).

I had so many questions in those early, scary, foggy days. I was grasping for anything that would give me hope, and desperately wanted someone to tell me that it would all be ok.

The advice that came from so many experienced parents in the forum was that the first 12 months would be the hardest, and that it would get easier.

12 months? That seemed like such a long time, especially when we were just a few weeks in.

How on earth would we make it that far?

Somehow though, with a little luck and a lot of support, we did.

In fact, we’re now over 3 years in to our journey and those wise words ring true.

The first 12 months were by far the toughest.

It’s not surprising really – for families like ours there’s the trauma of what happened (HIE is a lack of oxygen to the brain which causes injury), the uncertainty of what the outcome will be, the fear of hospitals, the lack of knowledge, the questions, the learning, the sleep-deprivation, the guilt…it all adds up, and the way it impacts families can vary greatly.

I clung on to the magic “the first 12 months are the hardest” and almost counted down to the 13th month.

I felt like it should arrive with a fanfare, maybe a marching band, and balloons!

Of course, it didn’t – it just kind of sneaked past us, and before we knew it we were through the worst of the storm.

The things that I found most difficult to dealt with in the first year are now much more manageable;

I’ve come (closer) to terms with what happened;

I don’t care if people look while I’m doing suction;

I have prepared responses for unexpected questions from often well-meaning onlookers;

I take pride in celebrating Heidi’s developments, no matter how small they may appear to others;

I can, mostly, talk to friends without bursting in to tears (but not yet managed a full episode of DIY SOS yet!);

I have the confidence to challenge healthcare professionals and know that my instinct is often right; I don’t give two-hoots any more if people see me as “that mum” and will take on any battle if it has Heidi’s best interest at heart.

Whilst lots of things have eased, other things have taken their place in the “to worry about” folder in my head;

Heidi’s growing so it’s not as easy to scoop her up and wander round with her;

her head control is something we’re still working on so we’re now struggling with suitable seating when not at home,

unless she stays in her wheelchair which presents it’s own accessibility challenges;

she is now too big for the baby-change facilities when we’re out and there’s unfortunately a real shortage of the amazing Changing Places which are suitable for children and adults with additional needs;

her muscles are growing and her hips are becoming displaced so there is concern she may experience pain and need surgery further down the line.

The list goes on.

So many uncertainties still, so many questions and so much to learn.

What we have learned though, on this crazy journey, is that these kiddies can do amazing things, and you adapt, and you cope (and there is support out there if you need it, which is so important).

You can’t predict what will happen, but you also can’t underestimate their potential, and you can’t quite believe just how much love you can have for one little person.

I think some things just go with the territory of being a parent.

The worry won’t end.

My friends with children (neuro-typical) aren’t worry-free…they range from potty-training troubles, to sibling rivalry, to mobile phone demands…may seem insignificant compared to some of the things an SN family will be losing sleep over, but just as real and to that person, and just as important.

It’s not always easy, and others sometimes ask “how do you do it?”.

You know what?

I have no idea!

I’m in such admiration of the other parents I see and take guidance from, and I don’t put myself in the same category.

You do what you need to do, and you do your best.

If you are just starting on your journey then hang on in there…I wish you lots of best wishes (and a little fanfare at month 13!).

‘Lost Voice Guy’, wins Britain’s Got Talent!

WHAT’S THE STORY?

On Saturday 2nd June 2018, Lee Ridley, who performs as the comedian ‘Lost Voice Guy’, won the 2018 series of ITV’s Britain’s Got Talent.

His win was remarkable for a number of reasons, including that he is the first comedian to do so, but also because he has Cerebral Palsy, a group of lifelong conditions developing early in life that affect movement and co-ordination, a result of which left Lee Ridley unable to speak and using a machine called a Lightwriter to speak for him.

Here is ‘Lost Voice Guy’ in action!

The runner-up in this year’s Britain’s Got Talent, Robert White who is also a comedian, identifies as having Asperger Syndrome (a neurodiversity that is part of Autism).

Both performers made light of their own disabilities or additional needs during their acts, referencing their conditions and people’s reaction to them as part of their comedy routine.

The audience ratings for the final were the highest since 2015, with an average of 8.7 million viewers tuning in to watch the show.

Is the fact that the winner and runner-up of this popular TV show both have disabilities or additional needs significant?

Is this a game changer for disability in the media?

‘Lost Voice Guy’ with the host of ITV’s ‘Britain’s Got Talent’, Declan (Dec) Donnelly, at the moment that he is announced as the 2018 series winner.

WHAT’S THE BACKGROUND?

It is still rare to see positive portrayals of disabled people on television, particularly on talent shows like Britain’s Got Talent.

Looking back through the TV archives, it is more common to see disabled people being used as the butt of jokes or hate speech in ways that would be considered completely unacceptable if they were being picked on for their race, gender, sexual orientation, etc.

In the 1990’s ‘Little Britain’ which starred current Britain’s Got Talent judge David Walliams, also featured Matt Lucas as a disabled character who was secretly able bodied, attempting to suggest that some disabled people fake their conditions in order to claim welfare benefits.

It was a hugely popular show of is time and is regularly re-run.

The Channel 4 TV comedy show ‘The Last Leg’, currently in its 13th series, features characters played by disabled people, who use their disabilities to comic effect.

‘Lost Voice Guy’ describes himself on his website as follows: “Lost Voice Guy’s real name is Lee Ridley.

That’s me! I am a writer, journalist, comedian and geek who is based in Newcastle Upon Tyne, England.

I also have Cerebral Palsy. I have no speech (I use a small machine called a Lightwriter to speak) and I walk with a limp.

Don’t worry though, you can’t catch it from me.

It just means that you better not get stuck behind me on the stairs if there’s a fire.”

He continues by outlining his varied career to date, his academic qualifications (Masters and undergraduate degrees in journalism), his wide range of hobbies etc.

You can see his website here.

Other disabled people regularly seen on television include Frank Gardner, who is a journalist and the BBC’s Security Correspondent.

Gardner was disabled in 2004 when shot six times by terrorists; his friend and cameraman was killed.

He is regularly seen providing specialist security commentary on BBC news programmes.

Former CBeebies presenter Cerrie Burnell who was born missing the lower section of her right arm and hand, left the channel last year after eight years during which she was regularly subjected to hurtful comments by parents who said that her disability scared their children.

One man said that he would stop his daughter from watching the BBC children’s channel because Burnell would give his child nightmares.

Parents even called the broadcaster to complain after Burnell, with Alex Winters, took over the channel’s popular Do and Discover slot and The Bedtime Hour programme, to complain about her disability.

More recently, Lucy Martin, who was also born without her right forearm and hand, became the first visibly disabled BBC weather presenter.

Her experience has been more positive, as while she has also had some unpleasant comments, the feedback generally has been overwhelmingly supportive.

The increase in media channels and self-broadcast channels such as YouTube has also led to many more disabled people using these to reach an audience, allowing them to showcase themselves in the way they want to, rather than how a broadcaster might portray them.

WHAT ARE THE ISSUES?

EQUALITY

If programmes such as ‘Little Britain’ made fun of people because they were black, or female, or transgender, then the backlash would be enormous.

It is rightly regarded as off limits on mainstream prime time television to belittle people due to their race, gender, sexual orientation etc. however this doesn’t seem to apply in the same way to disability.

Disabled people are routinely ridiculed, abused and attacked, with little or no protection seemingly provided.

Question: Is there is a ‘pecking order’ for equality? If you had to rank e.g. race, age, religion/beliefs, gender, sexual orientation, disability, etc. how would it look, and why?

Question: Do you feel that strong advocacy from campaign groups such as Stonewall, as well as social media campaigns such as #MeToo and #TimesUp, might have influenced this? How?

ATTITUDES

It has been suggested that the success of ‘Lost Voice Guy’ shows a shifting of public opinion regarding disabled people.

Excellent attendance figures for the Paralympic Games as well as the Invictus Games have shown that there is an appetite for disabled sport, and so it is possible that these changing attitudes could be extending into other areas of life such as television and the wider media.

Question: Does the recent success of ‘Lost Voice Guy’/Lee Ridley and Robert White change things for the better by raising awareness?

Or were the public watching and voting for them in some modern parody of the ‘Freak Shows’ of the Victorian era?

Question: Does seeing more disabled people on television, especially successful people and not just ‘victims’, make it less likely that the kinds of cruel comments Cerrie Burnell was subjected to will be repeated? Why?

NORMALISING

With one in five of the population of the UK having some kind of additional need or disability, including over 11 million described as disabled under the Equalities Act 2010, disability isn’t a rarity that is hardly ever seen.

Everyone knows people with disabilities, many of us have disabilities ourselves.

There seems, however, to be a disconnect between what we see and experience in the ‘real world’ and what we see on the carefully curated environment of television.

It is unlikely that a disabled person is going to be selected as a contestant for ‘Love Island’ anytime soon for example.

Seeing disabled contestants on Britain’s Got Talent could be seen as a positive move, but we won’t have fully succeeded in normalising disability until every role is available to anyone.

When we have a disabled Dr. Who, a disabled Sherlock, a disabled host of Britain’s Got Talent or Top Gear, and a disabled presenter of Blue Planet III then we might be getting somewhere.

Question: Is this goal achievable? Are there any roles on television, for example, that you could never see being available to disabled people? Why?

To conclude then, while ‘Lost Voice Guy’s victory in Britain’s Got Talent might be a significant step forward for disabled people of all ages in the UK, the jury is out as to whether this is a watershed moment, a game changer.

It certainly isn’t a ‘Golden Buzzer’ that creates a level playing field for everyone, but it might have played an important part in raising awareness and creating some positive change in society at large.

Let’s hope there is more to come!

Life with a Partially Verbal Child

If I answered honestly, it would read something like, “She can say a few words, but she is really hard to understand due to scarring on her vocal chords and craniofacial issues which make it hard for her to make certain sounds.

She also has a hard time with open-ended questions due to her Autism and Intellectual Disability, but she can understand most everything you say to her and does pretty well with “yes” or “no” questions.”

Instead, I write, “Partially verbal” because it’s more accurate, less complicated, and it fits better in the miniscule space they usually give to write your answers.

Despite her lack of ability to verbalize effectively, it feels like I am betraying her if I write that she is “non-verbal” because it doesn’t do her justice.

She didn’t speak her first word until she was four years old.

Before that, grunts, screams and gestures were her preferred methods of communication until she started speech therapy.

Even now, saying a sentence with more than three words is impossible for her, but she tries so hard.

Living with a verbally challenged child, whether they are completely non-verbal or partially verbal is challenging to say the least.

My husband, myself, and our other children sometimes feel like detectives, trying to unravel clues when Lilly is trying to communicate something we can’t quite understand.

As she has gotten older communication has gotten a bit easier; technology has helped a great deal.

Type to speak apps and apps with picture icon sequencing have made the communication gap a little less frustrating, but when she is in the middle of a meltdown, even those don’t help much.

In fact, if we try and prompt her to use her tablet when she is extremely agitated, the tablet will likely go flying (thank goodness for hard rubber cases).

In addition to the inability to communicate her needs when she is really upset, she is unable to verbalize vital information successfully.

These are the, “What if..?” scenarios that keep me up at night.

Unless you know her, and are used to the way she speaks, it is hard to understand her if she tells you her name, or even her age if she were to ever get separated from us.

She would unable to converse with first responders if there was ever an emergency situation.

She won’t tell us when she’s hurt. I noticed her limping one day and found a small cut on the bottom of her foot.

I still don’t know how she got it, but if I hadn’t found it, she never would have told me on her own.

As I cleaned off her foot and bandaged it, I tried not to let the “what if” thoughts spiral out of control, because that is a slippery slope.

She’s entering into those preteen years where she is craving some independence.

As much as she deserves that, and as much as I’d love to give it to her, I can’t; for her safety and my own sanity.

Due to the lack of judgement that comes along with the intellectual disability, and the lack of ability to communicate effectively in times of stress, she is always going to need some type of supervision.

One of the most challenging things for me has been going from being her voice to being her translator.

When she was younger, I would automatically answer any questions directed at her, or about her. In the last year or so, she began to get irritated when I would do this, so now I wait for her to answer and try and fill in the gaps when I can.

It’s definitely a process, because as a mom, my first instinct is to jump right in and now I’ve got to pull back.

No matter what the future holds, and I have no doubt there will be struggles, I will never stop encouraging and empowering my daughter to express herself and have a voice.

Whether it be through speech or through a communication device, I believe she has a lot to tell the world!

Spending time with GG

She lives in the States and her last visit to Ireland had been over 10 years ago!

It’s so special for my girls to enjoy their great grandmother! I’ll refer to her as “GG” as they affectionately call her- short for great grandma.

She is especially tender with my youngest Brielle who has complex needs.

She’s so happy to see how far Brielle has come from the critically sick premature baby, to a happy and thriving girl of 7!

My grandma is very forgetful. We joke together that she suffers from “short-term memory loss” just like the famous Disney character Dory!

She will ask me the same questions over and over again. Sometimes minutes after I’ve given her the answer.

I’ve realised in a lot of ways; she and Brielle are very similar at this point in their lives…

They crave relationship and companionship.

They don’t like being alone.

They need a lot of repetition and support to learn new things.

They are vulnerable, sometimes unaware of real or potential danger.

They are completely trusting and innocent.

They are dependent on others for many things.

They give genuine love and affection.

They find joy in the simple things.

They love a relaxing massage.

They enjoy a good swim immensely.

They are so positive and happy.

They are expectant and looking for new adventures.

They absolutely ENJOY LIFE!

You may notice this too- that sometimes the elders in our families, and our younger ones or children with special needs, although completely different ages and stages, share these similarities.

They are especially treasured as they often require much of our time and care.

Enjoy your grandparents and even great grandparents if you’re fortunate to still have them around! We love our GG lots!

What is Inclusion?

I guess I would say that I am an advocate for inclusion and work so hard to achieve it for my son.

To achieve inclusion, I believe it to be important for everybody to be on the same page and have understanding of different needs, even if they may not have experience with some of the needs.

I’ve written many blogs covering this topic, but I wanted to look at it from a different angle.

I have written about how crucial it is to include Zachariah in as many activities, opportunities etc as possible.

Anything his friends are doing, Zachariah should be right there enjoying it too.

But have you ever flipped this over and thought about how you include other children into what Zachariah (or your child) is doing?

Looking at Nursery as a starting point, Zachariah requires seating, standing frame, feeding pump, dummy, object of references, sensory toys, the list goes on. These are his things.

He requires buggy walks to calm him down or the enjoyment of fresh air to stimulate but also soothe him.

A lot of what Zachariah does may seem like special treatment to the other kiddies, which it isn’t, it’s a need that needs meeting in order for Zachariah to be happy, healthy and safe.

Every child will have their own needs that need meeting but may not be as demanding or obvious.

I often wonder about how other children perceive Zachariah and worry whether they see him as being different and receiving extra attention to what they get.

This is why I think it is so important that inclusion works both ways.

Now I’m not saying let’s give every other child a wheelchair or a standing frame, but there’s no harm in involving the children in a way that is fun for them, like pushing his wheelchair on the little walks to the park, if they wish to do so, or helping set up his feed, or enjoying quiet sensory time with him.

And I think it’s important to educate them on why Zachariah needs so many things to assist in daily activities.

Let them see that it’s important to Zachariah and without it he would really struggle.

This is inclusion! It may not be giving them the same as Zachariah, but it’s involving them in his activity.

You see how this can be flipped?

We work so hard to fit children with disabilities into a world that they should already fit into, that we forget that everyone should also fit into Zachariah’s world.

Or even better, we just all do our best to include everyone by planning properly.

Now I know there is a fine line between inclusion and getting them to do all the jobs that need doing within Zachariah’s routine, but if you make it all on their terms and offer, not demand, they will choose whether or not they want to be included in Zachariah’s daily routine.

There’s a very special friend at Zachariah’s nursery, who moved up to the preschool room when Zachariah was held back as it was more practical to do so.

Even though this little girl is in a different room, and only sees Zachariah at joint outdoor play time, she still comes to find him and plays with him.

My heart exploded recently as I was collecting Zachariah from Nursery, his 1 to 1 was telling me how this little girl had been pushing him around as they explored the world using her imagination.

His little friend was taking him to the beach and other wonderful places and telling him all about it along the way.

She was giving Zachariah so much here, as she wanted to share so much with him.

Zachariah smiled, giggled and did his flirty eyes as he listened to his friend narrate the adventure.

Just beautiful.

You see how this is pure inclusion?

They are joining their own little worlds into one and enjoying playing together.

Moving on to parks, I have stressed the need for more inclusion on parks time and time again.

I feel I have settled for a nest swing or a high back chair swing.

But recently I was challenged.

Why should it stop here?

Is this really inclusion?

As not all children can come out of their wheelchair, this will become a reality for us before we know it, there needs to be wheelchair accessible activities too.

An absolutely amazing piece of equipment is the ground level roundabout and it is the definition of inclusion, as it allows all children to go on without any disabilities getting in the way.

There’s room for wheelchairs, space to sit and places to stand, whilst someone pushes. Inclusion is everybody enjoying life together.

I understand that not everything can be achieved, but I feel there is so much more we can do to try and let down this thick barrier we have.

Disabilities are heightened when the world puts barriers up to stop a person being who they want to be and doing what they want to do.

Wouldn’t it be amazing to knock these barriers down?

It would feel so good not to be judged at the hospital for requesting a bed to change Zachariah’s nappy.

It would great to see all children playing together in one place without boundaries.

It would feel like inclusion if we didn’t need to keep campaigning for our children’s needs to be met.

But we do need to be part of the answer in all this and help people see what these needs are.

I’ve recently joined our parent /carer forum group and started to share our experiences to help shape services and adapt hospitals etc to make an inclusive and accessible town!

But I’m also listening to what other families need and branching out from my own bubble, which is just as important! I’m soon to launch a new club for children 0 to 16 with SEND to create a safe place for them to meet, I have big dreams to expand this and integrate and make it more inclusive.

But first I’m finding what our families with children who have SEND first. As there are already so many clubs for children, but not many cater for all needs.

We’ve just got back from a Calvert trust holiday in Northumberland and I cannot praise them enough!

Zachariah just fitted in.

No worrying about where his next nappy change will be done, no worries of him being on the side line watching rather than getting involved, and zero accessibility issues.

Zachariah was part of everything! Nothing was too big for the staff.

For one week our family was able to be a family and do everything together.

A lot could be learnt from this special place, we will be returning next year for sure!

Why I Hate End of Term as a Parent of an Autistic Child

It isn’t just because I have my own children to look after for seven weeks without any respite either. It isn’t the cost of things, or even the access difficulties associated with having autistic children.

It’s not the stares I dread, or the lack of sleep either.

No, the reason I hate the end of term is because there is way too much going on and far too many changes.

For children with autism, like mine, it all becomes far too much.

Let’s look at some of those changes.

First, you have Sports Day.

Well it isn’t really sports ‘day’ more like sports morning or afternoon and my kids hate it with a passion!

The noise, the confusion, the overload of different activities and instructions, the pressure to perform and the time restrictions are all overwhelming.

The entire idea of competing at something you hate to win a prize for a team that consists of children you don’t even know the names of is totally lost on my children.

They would much rather stay in school doing the usual maths or reading or sensory activities any day!

Sports day brings tears, sleepless nights, food aversion out of anxiety and so much stress I often remove my children from school until it is all over.

Can’t we just accept that for some children sports day is just way too much and they gain nothing from it?

Then, there are school trips!

My daughter has been waking through the night for almost two weeks worrying about her school trip.

She has intimate care needs and anxiety but as a selective mute child she is scared that she will be unable to communicate her needs.

Even with reassurance that I am going she is still full of worry.

What if someone is sick on the bus (she hates sickness), what if she hates it and wants home but can’t as she needs to wait on the bus leaving, what if she gets lost, what if, what if… I can’t make a social story as I don’t know everything that will happen nor am I able to control that day so her anxiety makes her sick.

It’s awful to watch but even worse for her.

Her world is out of control because the rules have all been changed for one day.

That day will have no structure, no playtime or lunchtime or other time markers that ground her and make her feel secure.

She doesn’t know what to say to others outside the confines of the school building so she will just stay silent all day.

I really am not sure what she will gain from the experience if her anxiety is so high she can’t even get off the bus!

Then there’s the End-of-School show!

Rehearsals instead of PE, practicing songs in class instead of writing, taking in different clothes to wear for the show and now finding out there is an evening performance she has to go back to school for too.

School is daytime not night-time.

A school show has upset her entire thinking and confused her to the point she has lost all her bearings.

How can you go to school at night?

Where are the beds?

How can you do playtime in the dark?

I think this may be pushing her too far so we may have to have more time off again!

Award ceremonies!

When your child tries so hard to please all year but academically will only be average it’s utterly heart-breaking for them to watch their peers pick up all the awards for things that come so naturally to them.

As a child with hugely restricted eating and very underweight she easily catches bugs and viruses so won’t ever get the attendance award either.

It’s soul destroying to put your child through that award ceremony every year when their self-esteem is so low you see silent tears run down their face every time their name is not called.

Is it worth it?

What do they gain from having their heart broken for another year?

Preparing for next year’s class

My child lives in the here and now.

She also takes everything literally.

If you don’t know who her teacher will be next year it is better not to even tell her that.

Otherwise she will envision a class of children with an invisible teacher and never want to go again!

Seven weeks is a long time to tell anyone anything in advance and while she has to understand she will return to a different class and teacher with so many unknowns please only tell her things that will be definite.

Don’t promise her something you can’t deliver or you will lose her trust forever.

My daughter likes school.

She enjoys the structure and the routine and the predictability of it all.

Unfortunately, at the end of summer term the structure and routine change so much she has no idea what will happen next or where she should be.

She gets confused and anxious and upset.

It’s hard to watch her go from loving school to hating it in the last few weeks and every year we go through this over and over.

She hates the end of summer term and that makes me hate it too. I must be the only parent I know who would be happier if homework continued right up to the final week and lessons carried on as normal.

I do my best to support both my autistic children at this time of year but it’s so exhausting and I hate seeing them upset.

There is much to be said for autumn term and routine!

Roll on August when they go back and summer term madness is a thing of the past!

Autistic Pride Day – Because He’s Worth It!

Advertising and marketing media is filled with slogans such as, ‘Because you’re worth it!’, ‘It’s all about you!’, and, recently, that dreadful advert from TUI (formerly Thomson Holidays), where an entourage of lackeys serve the every whim of the main character, ‘Putting you at the centre!’

So, what does any of this have to do with a blog post about children with additional needs on Autistic Pride Day?

Well, parenting is life changing, it alters everything; the focus of our lives becomes less about ourselves and more about the child we’ve brought into the world.

This is generally (although, sadly, not always) true for all children, but it increases even more for a child with additional needs or disabilities.

The level of care required, the sacrifices that need to be made, the time that needs to be invested, and so much more all increase exponentially.

James is 16, however his additional needs require a level of care that would be typical for a three-year-old.

He cannot be left unsupervised, has no real sense of danger, has a high level of personal care requirements, and there is a great deal of juggling that needs to happen just to get through each day.

In this world, the self-centred self-obsessed advertising and marketing slogans are just irritating white noise; an irrelevance in a situation where they cannot have any place in our lives.

Our focus simply cannot be on ourselves, it is impossible.

It has to be on both of our children, but particularly James as his needs are so much greater, however we wouldn’t have it any other way.

There are many challenges that we have faced in recent times with James.

Him not being willing to leave the house, especially in the day and particularly not to school.

His recent diagnosis of epilepsy to add to autism and learning disability.

Things are hard and yet through it all, through all the difficulties and the self-sacrifice, there is the overwhelming natural desire to meet James’ needs, to give him unconditional love, to be there for him, with him, through it all, and to take pride in each and every achievement he makes.

And every now and then, we get a wonderful treat!

A few evenings ago, James was sat with us when he was suddenly filled with joy, a huge smile spread across his face, and he excitedly said “Appy!! Appy!!”.

For this almost non-verbal boy this was a wonderful expression of how he was feeling in that moment, and it had us in bits for the rest of the evening!!

We were, and are, incredibly proud of him.

Proud that he is able to cope with it all, to face much bigger challenges than we will ever face, and to still be able to experience overwhelming joy in the midst of it all!

All of the sleepless worry-filled nights, all of the challenges and difficulties we face together, all of the hospital appointments, all of the sacrifices that need to be made, all of the times when we can’t do something or go somewhere, even all of the times when we are cleaning up things that we would rather not, all of it melts away when times like this come.

We change the marketing slogan to meet our context, “Because it’s all worth it!”, “Because he’s worth it!”

Worth it because we love him, worth it because he tries so hard and we are so totally and overwhelmingly proud of him for each tiny little step he takes, every little sign of progress, each word he is somehow able to convince his voice to say.

What about you?

Where do you see yourself in this?

Maybe you are a parent or carer of a child with additional needs and ‘get it’ as you are on the same journey?

Or maybe you are a children’s or youth worker, or in education, and get to support a child or young person with additional needs when they are in your session or class?

Whatever your context, the counter-cultural message shines through… put others before yourself, love others, be self-sacrificing, serve others, especially these amazing kids that we have the privilege of journeying with, that give us so much to be so very proud of.

So, let’s continue to be counter-cultural, revolutionary, rejecting the narcissistic, selfish, self-obsessed, self-serving culture that society would have us embrace.

By putting our kids first, being proud of all the little things they do, we can be better people, be the people we should be, to love and serve the children we care for, whether they are our own or not.

Let’s show them how proud we are of them today.

I love my Daddy because…

He loved me first!

He gives the best cuddles.

He always plays fun games with me.

He holds my hand so I don’t fall.

He carries me when I am tired.

He spins me around on the ‘big chair’.

He learns new sign language to communicate with me.

He always asks me about my day.

He takes me on long walks in my trike or wheelchair.

He brings me on exciting holidays.

He knows me better than anyone (besides mommy!)

He sits with me through appointments and hospital stays.

He keeps me safe and secure.

He knows how to make me laugh!

He provides for all my needs.

He is big and strong.

He helps me to reach my potential.

He plays loud music for me.

He reads my favourite books with me.

He teaches me new things.

He shows me how to be careful.

He protects me from all harm.

He tells me how beautiful I am.

He treasures me, his youngest daughter.

He wouldn’t change me for the world!

I love my Daddy because he is MINE!

*written with gratitude from a 7 year-olds point of view, who has complex needs *

Special Daddies

This is something I had growing up and I guess I just thought this would be the best for my children.

I guess I also planned to have a child who could live a normal life not have complex health needs.

Neither of these things happened for me. I was blessed with a child with complex needs but that caused tensions within our normal family relationship.

When everything didn’t work out with mine and Ethan’s dad I soon realised it didn’t matter that we weren’t together.

All that mattered was that Ethan had both a mum and a dad who loved him very much.

Being a special needs dad is a full-on job.

Ethan needs round the clock care and he is incredibly lucky to have two very special dad’s in his life.

Ethan’s dad won’t mind me saying but he hasn’t always found it easy to have a child with special needs.

It’s not what he had planned for his child either and it’s taken longer to find his rhythm as a dad.

This journey has bought him to be an amazing dad who loves his son for who he is and not what he should be.

Ethan adores his dad and they have a special bond.

Ethan spends every other weekend at his dads and his dad comes to put him to bed at ours once a week too.

They love going for day trips out for adventures, having splashy baths and his dad still carries him everywhere to include him in as many normal things as he can.

Being a single mum to a child with complex needs I thought no one would want to take us on as a package, but I could not have been more wrong.

I have found an incredible man who took to being a step father instantly.

He has never seen Ethan as anything other than just that, Ethan.

They love wrestling together, watching Star Wars and running around the house chasing Ethan’s sister.

He is the first person to meet us at hospital when there’s an emergency and he takes time out to come to appointments.

He is the biggest support for us and we wouldn’t have gotten this far without his support.

This may not have been the way I planned things for all those years but I could not be more grateful that Ethan has ended up with two incredible dads who both adore Ethan and have two very different but special bonds with him.

I love watching Ethan with both of them and how he giggles at all their special unique ways with him.