Playground, ‘Friends’.

A friendly little girl came up to my five year old daughter and asked her would she like to play!

This is probably a fairly normal experience for most children. But not for my Brielle.

B did not respond or even look at the girl. But I responded enthusiastically for her “of course she would!”

The girl and B proceeded to go on the see-saw together, ride on the, ‘twisty-thing’, swing beside each other, and climb across the bridge and go down the slide.

It made my heart happy to see my little girl who cannot walk, talk, see or hear very well interact with a cute little stranger in a completely typical way at the playground.

The stuff of childhood.

Of course, B took her direction and support from me.

I was her voice answering back to her new friend. Explaining that she couldn’t walk by herself, or talk.

I have to admit though I felt a twinge of sadness when the girl suggested they go through the tunnel and play at the ‘kitchen’.

B couldn’t make it through there by herself and neither could I support her, it just wasn’t possible.

I suggested they go over the bridge and down the slide again.

It’s hard that she’s so dependent sometimes.

I just want to enable her and let her be as independent as she can be!

Like all special needs parents want for their children.

I’m thankful for the actions of the girl’s dad. He didn’t make a big deal of B’s disabilities or act embarrassed that his daughter asked to play with a girl who obviously needed a lot of help.

He just let them be kids and explore the playground together.

B’s new friend really seemed to enjoy playing with her, and B was happy too, which gives me hope for her future social interactions.

Up to now, she mainly has played with her older sisters, family members or, ‘carers’.

She has a 1:1 at school to assist her interactions as she is deaf and mostly blind.

On saying goodbye at the swing-set, the girl exclaimed rather indignantly, “She didn’t say bye to me!”.

In other words, she didn’t audibly say goodbye back.

I explained to her how she couldn’t talk, but she could wave goodbye and touch her hand, which her dad encouraged she do with B.

It was a very sweet moment for these new playground, ‘friends’.

Five Words I Want To Say

I’m equally skilled in vocalizing my displeasure, disagreement and anger over the unfairness, inequality and lack of inclusion that surrounds the special needs community.

And I’m honest and candid about the joys, the beauty and the humbling experiences that come along with raising a child with a disability.

But the five words I want to say over and over again are; I Wish You Already Knew!

I Wish You Already Knew: The pain I feel knowing my son’s birth injury could have been avoided and that there isn’t a second of the day I don’t think about it.

I Wish You Already Knew: The fear I continually have wondering how I can financially provide all the out of pocket medical, therapy and equipment costs that insurance refuses to assist with.

I Wish You Already Knew: That my real personality is in no way aggressive or confrontational or combative, but that I’ve had to throw that all out the window in order to be heard and advocate for my son.

I Wish You Already Knew: How hard it is to push a wheelchair, a grocery cart, hold a typical toddler’s hand and try to shop quickly through the store.

I Wish You Already Knew: That I’m scared about the future and who will take care of my son when I’m either too old or no longer here to do so myself.

I Wish You Already Knew: The overwhelming feeling of falling short with the therapy and resources and finding all the best opportunities to give him the best quality of life.

I Wish You Already Knew: How painful it is when you verbally say things like, “if we prayed harder he’d be cured,” “that it must be your fault that he’s disabled,” or “you should have aborted him before he was born,” and how selfish I am because I allow my child to continue to live.

I Wish You Already Knew: That I’m so tired because I haven’t slept in years for fear that my son will have a medical crisis in the night and depend upon me to be there to rescue him.

I Wish You Already Knew: All the things that goes along with parenting a child with special needs so you’d understand what I am feeling, experiencing and going through. I wish you knew so you could offer me a hand or embrace me in an understanding hug instead of intensifying my pain and challenges.

I Wish You Already Knew: All the things I shouldn’t have to say.

“I Don’t Want To Have Cerebral Palsy Anymore, Mum.”

It was 6.30 am when he broke down and cried, lying next to me in his bed.

“I don’t want to have Cerebral Palsy any more mum. I hate it.”

He sobbed.

“Why do I still have to have it as a grown up too?”

“I won’t be able to walk even when I’m a grown up”.

His twin sister then added, “Why does Hadley have Terrible Palsy?” (That’s what she calls it, bless her heart.)

It was really, really tough (world’s biggest understatement).

I struggled to keep my voice calm and not break down myself.

I couldn’t let them see my hurt too.

But inside I was screaming, ‘I hate Cerebral Palsy too!!’

This happens from time to time.

But this morning, on the eve of their birthday, and because Hadley is finding moving up to year 1 really difficult, it was possibly the hardest of all the times he has asked these questions.

And I was not prepared and still a bit sleepy, which really didn’t help matters.

This is what I said. And I just hope it was good enough.

I hope his day has not been too rough on him and that he has not felt so heartbroken and different and like life is so unfair.

And I hope Erica is not worried about him or about what Cerebral Palsy is.

I want them to be excited about their birthday tomorrow and not sad.

But life is so unfair on both of them sometimes.

Living with disability and understanding so much about it at such a young age must be horrible, for both of them.

I said, “I know you hate it darling. And we all hate things sometimes. It’s okay.”

I explained that I would like to answer Erica’s question about why he had Cerebral Palsy and perhaps that would help.

I said. “When you were in my tummy, your brain grew a little bit differently to Erica’s.

Erica’s grew so that she would be really good at being kind and generous and funny and yours grew that you would be kind and generous, sporty and have the best memory EVER!

Yours also grew to have Cerebral Palsy.

Everyone’s brain grows differently.”

(Forgive me, medical professionals).

Then I said, “There are lots of people in the world with Cerebral Palsy, including lots of your friends and lots of famous people.

Like the lady that mummy and daddy went to see who you thought was really funny (comedian, Francesca Martinez).

“And lots of the amazing athletes you’ve been watching in the Paralympics. Lots of people have it.”

I said, “And do you know what, you will be able to walk when you are a grown up.

You are so clever and it might take a bit longer than you want, like it took Erica longer to ride a bike than you, but you will be able to when you are a bit stronger.

And you are getting really strong.”

I also told him about his Teaching Assistant’s son, who also has Cerebral Palsy, who was unable to walk when he was little, but who can walk and run now.

I told him that his mum could barely keep him still and that I was sure she would love to talk to him about how he got strong and started to walk.

(I briefed her on the whole morning’s conversation in private at drop off so I’m sure she has worked her magic today, helping to reassure him).

I said, “Perhaps we should not call it Terrible Palsy (Francesca Martinez, this is where you come in).

The funny lady that we saw the other day calls it being wobbly.”

They both laughed.

I started to feel like I might be helping a bit.

“Why?” they said, “Because her body is a bit wobbly and the word Cerebral Palsy is really hard to say.

I think that’s a good word, wobbly.”

They laughed again.

“Perhaps though, you might like to choose your own word,” I suggested.

“Silly billly” said Hadley. “I think I might say I’m a silly billy”. Admittedly this is not quite what I was thinking of, but I was just so grateful he was starting to buy into the idea and was not so distraught that I said that sounded good.

“Perhaps it could be something to do with your amazing memory?” I then suggested further.

(He has and incredible memory, almost photographic….it’s astounding!)

So, in the teary eyed, early morning, half asleep kind of way we were discussing this, we came up with the idea that Hadley’s brain grew some super-powers when he was in my tummy – and he is Super Memory Boy.

It’s not perfect. It probably won’t stick.

But it helped this morning.

There is never a right way to tackle these things, that I know, but all day I have been wondering how other people have explained and helped their children cope with disability and the rollercoaster of emotions that comes with it.

How they have managed to put on a brave face when their little baby is sobbing and you can’t take away the thing that is making them so sad.

If anyone has any insight and suggestions, please let me know.

I’m sure this won’t be the last time, but will I ever really be prepared?

Where Are the Age Appropriate Toys?

If you have a child with low hand function, non-verbal and non-mobile, where do you find toys for them?

Everything we find that Charlie has the capacity to play with is in the Fisher Price section of baby and toddler toys. Bright colours, lights, music – those are all well and good, but the context is always so babyish.

It’s a farmer and his cartoonish animals on a roundabout, or a simple sensory cube with mirrored sides and primary-coloured knobs to press, twist, and switch.

We long for the all-too-rare sighting of something made for older girls that might not exclude Charlie.

Something musical, she loves music.

No small fiddly buttons, though – big ones are needed.

But the colours need not come straight from the Play School set – pinks and purples would please our little Princess, but anything would do.

We got the message that she’s keen for some older playthings over the weekend. Daddy lifted the bonnet on his car to change a headlamp, and Charlie and I were standing nearby.

She was immediately drawn to the engine bay, so we approached. When we got close enough, she reached out and pulled her weight right off of my legs (very rare) and started to touch everything within reach.

She explored caps and leads and hoses for a good ten minutes with a huge grin on her face until her little legs started to shake and I had to take her down from there.

How wonderful it was to see her so interested and really pushing herself physically to be able to have a better look!

How amazing to see the elation on her face as she felt her way around, patting and prodding plastic, rubber, and metal.

What a lovely experience for her big sister, who was excited to stand beside her and join the game. And what a great reminder for us that she’s ready for some toys that are aimed at children, not toddlers.

The only trouble is… where are they all?

Is it really necessary that we go looking for disability-specific companies and pay three times the price of anything in our local toy shop?

I’d love to hear some of the creative solutions other families employ when buying or modifying toys and games.

With Christmas coming, the inevitable question from family and friends is on its way: ‘What can we buy Charlie for Christmas?’

This year, I’d love to have some answers.

When Children Ask Questions!

We wonder how much information is too much for children, we ask ourselves, ‘Will they be able to take in what we are saying’ etc.

But the fact is, children want the truth and if they don’t quite understand they will either take what they do understand and move on or ask more questions.

This is all fine. Take their lead with it.

It got me thinking about an answer we could all use to try and explain why children are all so different and here is what I came up with…

Just like butterflies fly at different paces and in different directions, children learn at different paces and reach different goals.

This doesn’t make any child better, more clever or more intelligent than any other child.

It makes them all special and all different with their own uniquely designed wings!

We should never compare children against one another but measure their own progress and see how they’ve achieved their own personal goals.

Would you race a cheetah with a snail? No we wouldn’t so we shouldn’t compare children with other children.

I know that this answer wouldn’t be appropriate for all children but it’s a base.

We never know when children are going to put you on the spot and start asking questions, so I believe it is best to have done some thinking about it.

Likewise I believe it important to teach children that intelligence is not everything, and it certainly doesn’t define us as a person.

We all have characteristics that make us stand out and we have our own methods of learning and our own obstacles to overcome.

A child with a visual impairment may not learn to talk as quickly as a child without, as more often than not we learn to speak by watching the lips of others and copying the movement.

For a child with a visual impairment this will not come easy. 

They need more time as they learn by listening and feeling your lips movements instead.

I wrote this blog to make us all think about what we are telling the children around our little ones and encouraging you to be honest with them as they are more alert than we give them credit for at times.

I love my Son and everything he teaches the children around him.

Rochelle, Mummy to Zachariah xx

A Sporting Chance

Well that will teach me to worry. Because he is the complete opposite. He is sport obsessed!

He’ll watch pretty much anything, but I guess his top three would be football, cricket and formula one! 

But he’s not content with just watching sport. He plays LOTS of sport and absolutely throws himself into everything. And he is VERY competitive! 

He rides (horses and donkeys) with the RDA (Riding for the Disabled Association).

He plays cricket (he is a mean bowler and his hand-eye coordination is way better than mine!), tennis, wheelchair rugby and table tennis, as well as football (with a bit of help from his dad or grandad).

He also loves bowling, swimming and cycling (he has a special trike). He’s even tried his hand at fencing!

I’m sure there are other things I’ve missed off the list too.

Occasionally, the frustration and upset I worried about will rear its head, but it’s very rare.

In fact, 99% of the time he is in his element when he is throwing, kicking or hitting some sort of ball or involved in some sort of race!

What’s so wonderful is that playing sport for Hadley is the most amazing therapy. (As it is and would be for many children with or without special needs).

Tennis in particular has been incredible for him and we’ve seen dramatic improvements in his core tone since he has been having wheelchair tennis lessons.

The reaching and stretching he manages and the coordination required when holding a racket is amazing and we would never be able to convince him to do these during normal physiotherapy.

He would find it very hard and would complain and most likely refuse.

But his love for sport means he fights the pain barrier and tries so hard. He’s doing himself so many favours without even realising it, making himself stronger and more independent by the day.

Horse riding also helps his core tone and balance no end. But more than anything, provides a stretch of his legs that we could not achieve any other way, not without serious protest and/or discomfort.

And of course emotionally, the contact with animals (particularly horses and donkeys) is very theraputic and calming. Win-Win!

And this summer, of course, we have added the Paralympics to his list of sport viewing choices.

He is really enjoying watching anyone competing in a wheelchair.

I’m convinced that after the games we’ll see him self-propelling more, just to be like the guys and gals in Rio.

He’s also very likely to choose a new sport after watching the games – I’m just hoping it’s not stunts like Aaron Fotheringham – did you see that jump during the opening ceremony?

All I could think was, “His poor parents..” – they must have been having kittens!

I was never very sporty as a kid. I liked watching sports, but was not exactly the most skilled at taking part and so preferred to watch others and cheer them on. But I really would have loved to have been good at sport.

So it is wonderful to see how much Hadley enjoys it and how good he is! Competition fuels him and he is so passionate. He cannot hide his excitement for sport and I love that he has that.

I am so determined to keep fueling that passion and keep removing any obstacles that might come his way. I’m sure that some sports will be more of a challenge than others, but where there is a will there is a way.

I believe it’s just about finding the right way, and sometimes the right person to help.

When we approached our local tennis club about giving Hadley some lessons, we happened to be contacting the right place for him, without even knowing it.

The coaches there have been coaching a wonderful guy who is now playing for Britain in the Quads wheelchair tennis competitions. He happens to have the same type of Cerebral Palsy as Hadley and he also happens to be a really nice guy.

He has watched Hadley play and given him some tips.

His dad also has been fantastic, adapting one of his son’s old tennis wheelchairs for Hadley to use during his lessons – he looks like a real pro.

All of this has inspired Hadley to try really hard and he absolutely loves his lessons. I’d really recommend them to any child who needs to develop their fine and gross motor skills as well as core tone.

It’s possibly the best thing we’ve ever done for Hadley therapy-wise. But he does not look at it as therapy at all!

Of course it’s not just physical therapy – exercise and concentrating on something so intensely is also great for stress relief as well as aiding sleep (I say that quite loosely as Hadley’s sleep patterns are far from ideal, but on a big sporting day, he really does sleep more soundly.)

I could talk about the benefits of sport for hours, but I won’t. Not tonight.

Because having taken Hadley horse riding (I was his side walker for an hour!) and playing cricket and football in the garden with him before bed tonight, I’m pretty tired too!

I’m Starting To Not Notice You Anymore

I can dive into a grocery store focused intently on my list of items and comfortably not care if you are staring at me trying to balance a grocery cart, push a wheelchair and hold a small toddler’s hand so he doesn’t decide to put four pounds of bananas in the cart.

It doesn’t matter if you make a snide comment while I’m waiting unloading my groceries at the check-out and insinuate that my child a merely a financial burden on society and a hardship for his family.

Or if you’d rather be a bystander watching me struggle to load a typical child into a car seat, lock in a wheelchair and unload groceries all within minutes of each other, than asking if you can lend a helping hand, I’m starting not to notice you anymore because I’ve realized that you are not a productive part of my day and have the potential to bring my day down in unnecessary sadness and additional grief.

The consequence to not noticing you anymore is that I may miss that unexpected random act of kindness or not be able to identify or pick out a kind person in the crowd.

I no longer look and seek out those ready and willing to be our unlikely hero, a compassionate hand, or loving heart to our day.

It has become simply easier to march forward, not noticing.

While humans crave interactions with one another yet we force upon each other meaningless conversations and actions – especially when something makes us uncomfortable like witnessing a child with a severe disability in public.

It’s so much easier for strangers to look away, or not know how to properly respond, or to have no filter on what they say if they do pay any attention to a family with a disabled child.

Some may think that is sad or being a defeatist, some will deem it a natural defense mechanism for special needs parenting, and many others will absolutely understand.

That’s the unique thing about the special needs journey as parents even thought we’re all traveling this disability road we are all at different places and stages on that road.

No journey less challenging, no feelings less important or invalid, no journey trumping the experiences of another family.

A Day in the Life of a Special Needs Mom and Dad

Our court date was fast approaching!

This was the only day we had available to file these papers before it might be too late and our court date would be postponed

My husband, Malcolm had taken the day off work for that very purpose!

Kristin, Bethany’s assistant arrived to look after her while we were out and about! 

She took her place on the couch next to Bethany, who was hiding beneath her spiderman blanket!

Malcolm and I were then free to take our leave and go to the bank to get our papers notarized then filed.

Of course, when you’re a special needs family, nothing can be just as simple as following the plan, right?!

When we got to the bank, Malcolm realized his driver’s license wasn’t in his wallet and we could not proceed with our plans without this form of  photo identification, so we trekked back home to search for it.

This was going to waste precious time!

He had no idea his license was missing, or for how long it had been missing, so obviously, he also had no idea how long he’d been driving around without his license!

We searched high and low but couldn’t find it anywhere.

At this point, I became quite distressed.

I was angry, disappointed, depressed, and despondent!

I almost had a panic attack. I had visions of this problem delaying our plans to get the application filed on time.

The whole guardianship process can take up to six months to complete, so the application needed to be filed six months before Bethany turns 18, which was exactly 6 months from that day!

Since we could not find Malcolm’s license anywhere, we were now going to have to waste even more precious time going to the DMV so he could order a new license.

He was issued a temporary license to use but it didn’t have his photo on it!

I wasn’t at all sure the notary person would accept an ID with no photo!

If she didn’t accept his temporary ID, we would have to wait until his new license came in the mail, which could take weeks and Malcolm would have to arrange getting another day off. He works in a teeny, tiny post office where he is the only employee and is rarely ever permitted a day off!

To make a long story just a wee bit shorter…

We got Malcolm’s temporary license and went back to the bank where the notary person did accept it and she notarized our application.

We high tailed it the 25 miles over hill and dale to the surrogate court, in the county office building, where we successfully filed our 17A special needs guardianship application on time!

What a relief!

What a sense of accomplishment!

Then we redeemed the day by taking a stroll through the Fly Creek Cider Mill where Malcolm sampled some hard cider and we bought two pieces of fudge to share!

Mind Your Language: The Burden of Fear

The TV was producing an extra layer of mayhem, switched on because friends were appearing on the BBC 2 Sunday Morning Live Show.

Firstly, a showcase of the work of wonderful actress Sarah Gordy, who has Down’s syndrome.

We all competed to say, ‘Shhhhh!’ the loudest.

The conversation then shifted to the studio where a panel of experts were to discuss the implementation of the new Non-Invasive Prenatal Test which is being trialled throughout England at the moment.

This antenatal screening test is the subject of a Nuffield Council for Bioethics review.

It’s serious business, the ins and outs of which will have to wait for a subsequent column.

We saw parent Lynn Murray who was there to portray her lived experiences and to call for updated, unbiased information to be given to parents before being given time to make decisions which are right for them.

Portraying the medical model of disability was a consultant, and a Rabbi was on hand for a deeper spiritual insight.

Or so I thought.

This well-respected man, a theologian, clearly had very outdated ideas of Down’s syndrome.

I stood, frozen to the sport, mouth open.

Tears began to well.

Our eldest daughter started shouting at the TV, before crying too.

Our high-speed domestic ordinariness had been stopped in its tracks by words that stung.

They are loyal and happy when young children but when they grow up and have to go into a care institution, their parents will worry that they are not able to visit.

An adult cannot sustain itself.

A big burden.

A Downs.


So many myths.

So many dehumanizing words.

And such a damaging attitude towards all members of our communities who need a little more support than others to live well and be heard.

The assumptions made by the Rabbi are shared by many of course, ignorant of the joys and the possibilities that accompany the challenges of parenting a child with Down’s syndrome.

Oddly, I didn’t immediately want to write in and tell him that Natty is more than a 2 dimensional musical and loving Down’s cutout.

That she has expert comedy timing, an intuitive sense of mischief, can swim like a fish, twerk like Rhianna and looks more like her own family than any other child with the same condition.

I didn’t think of telling him that plenty of adults with Down’s syndrome live independently with friends or a loved one with the right support.

Many have a job and a buzzing social life that he’d be envious of.

No, the word that stood out for me was, ‘burden’.

I wanted to educate him, tell him that painting one group of people in society as a useless load to be hauled along at the cost of the rest is very dangerous ground indeed.

History teaches us that it divides and creates resentment.

The Rabbi should have understood that more than most.

And while I wanted to remind him that we all need support from others and contribute to our communities in differing ways that cannot simply be measured financially, all I could think of was that it was this kind of mentality that led those with a learning disability to be the first victims of the holocaust.

The Rabbi should have known that too.

Yet here he was, on a national television debate giving the very kind of subjective misinformation that leads to inequalities, discrimination, segregation and even worse, hate crimes.

Currently as a society we are walking in a shaded area between respecting the reproductive rights of women and their choices whilst not coercing them in any way with loaded language and also respecting the rights and voices of those with a disability.

Sadly, the Rabbi’s words will have served to create more fear, stigma and division.

He should have known better than that.

Also on BBC 2, a documentary, headed by actor Sally Phillips, is due to air at the beginning of October, exploring the way in which the new screening tests are being delivered, the ethical issues around that and the possible effects on the Down’s syndrome community.