World Smith-Magenis Syndrome Day

Our friend, Yolanda, would know the look of a SMS household: jelly handprints on the TV screen, spilled milk on the kitchen floor ,a box of cereal poured out onto the counter, and new roll of toilet paper completely unrolled onto the floor.

“You know what’s really funny?” he asked, while waving the now wrinkled and WET hand towel in front of me.

I didn’t.

“Yolanda is from Holland.” I still didn’t know what was really funny. “Welcome…to…Holland…” That was funny.

We had come full circle in the years since our son’s diagnosis of Smith-Magenis syndrome. Garrett was eighteen months old when our pediatrician ordered genetic testing.

The results showed that Garrett was missing a piece from one of his 17th chromosomes; the diagnosis was Smith-Magenis syndrome, called SMS for short.

It explained the symptoms we were aware of: low muscle tone– he was late sitting, crawling and walking, feeding issues– he was always choking, high pain tolerance– he never cried over shots and a sleep disturbance– up every night, all throughout the night.

But it also predicted symptoms we were not ready to hear: intellectual disabilities, self-injury and autistic-like behaviors.

In the early days of the diagnosis, we experienced a “get as much information as we can find” phase that was quickly followed by a “we don’t want to know anything else, ever” phase.

And, eventually we discovered the Emily Perl Kingsley essay, “Welcome to Holland.”

Some of those lines really expressed what I felt and other parts…not so much.

“‘And you will meet a whole new group of people you would never have met.’” I read that line to Charlie. “Seriously?” I asked.

“Is this supposed to comfort me? I already have friends.

Thanks anyway.” Although rare, “it is estimated that SMS occurs in 1 out of 25,000 births. SMS is under-diagnosed, but as awareness of it increases, the number of people identified grows each year”. Charlie and I knew all about awareness increasing the number of indentified cases of SMS.

After attending our first PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome) conference, we brought pamphlets to our local Autism Support Group meeting.

We had been going for over a year because Garrett’s autistic-like behaviors had been getting more difficult.

He would tantrum when transitioning from one activity to another, hit himself over certain noises and become inconsolable after even the slightest changes in routine.

We found we had a lot in common with parents of autistic children and wanted to share what we had learned from PRISMS.

One particular woman at the meeting was dumbfounded at the list of SMS characteristics.

“This sounds just like my grandson,” she told us. Charlie explained how much Garrett looked like other children we met at the conference: “They tend to have round, cherub-like faces with a mouth that’s downturned.

A lot of the kids have thick eyebrows and a large jaw.

But the strangest characteristic for us was the SMS voice.

It’s hoarse and scratchy…and every kid we met sounded so much like our son.” Charlie took Garrett’s school picture out of his wallet.

“That could be Zan,” she whispered.

A few weeks later, Zan’s blood work was sent in for a chromosome test. Robyn, Zan’s mother, called me the day she received the news. “Zan has SMS. Finally! We have answers! And people who understand what we go through as a family.”

She was happy. Happy to know there were other children like her son.

ppy to learn his behavior problems were not her fault. Happy to meet those people she “never would have met.”

After “finding” Zan, Charlie was determined to raise more awareness of SMS. “

We could hold a 5K and raise funds for PRISMS at the same time,” he told me.

I wanted to continue the sense of community we felt at the PRISMS conference.

Our 5K became an annual weekend event that included a family picnic. When Brandi’s family from Canada mailed us their entry form, we joked that the 5K had become an International event. Brandi’s daughter, Lilli, had been born with a congenital heart defect.

It’s a less common feature in SMS (25%-50% of cases), but a reason to order genetic testing which is the reason Lilli was diagnosed in infancy.

The first time I met Lilli, she was three and rolling across the floor to get around.

Today, Lilli is in elementary school and many adults have difficulty keeping up with her.

Jean lives in Kentucky with her son, Nico.

They have brought friends and family to our 5K, even Nico’s uncle from Mexico attended one year!

Although he is only in elementary school, Nico is quite the ladies man. The SMS “self hug”, which looks exactly like it sounds, melts hearts and endears our kids to others.

Nico wears hearing aids which is not uncommon with SMS kids, 50%-70% of the SMS population have hearing impairment.

Carissa and her family traveled the farthest distance to our event, all the way from Vietnam.

Carissa’s daughter, Scarlet, is the second child in a family of three girls and one boy.

Like most SMS families, Scarlet is the only child affected.

“Although SMS is caused by a deletion of genetic material, it usually does not run in families” For more information on Smith-Magenis Syndrome visit PRISMS.

“We should post photos at the registration table of other SMS families who cannot travel this far,” Charlie suggested. “Wearing our 5K shirts, of course!” So began our photo collection of SMS models across the globe. Chanty, in Alaska, wore our shirt in front of the local fishing boats.

Chanty was born with renal abnormalities which affect less than 25% of people born with SMS.

She and her mother, Barb, had to fly to a hospital 3 hours away when Chanty needed to have one of her kidneys removed.

Despite some pretty scary health issues, Chanty is a chatty teenager with a fondness for visiting families on the PRISMS facebook group.

Her uplifting comments get more likes than anything I have ever posted!

Sierra’s mom, Denise in New Mexico, photographed Sierra at the Albuquerque International Balloon Fiesta.

Sierra sleeps in an enclosed bed to ensure she does not leave the house while the rest of the family is sleeping.

With the SMS disturbed sleep cycle, Sierra wakes up in the middle of the night and rises early in the morning. Rachel, from South Carolina, posed for her mom, Julia, in a grove of Sabal Palmetto trees.

Rachel loves to play on electronic games, the DSi being her most favorite.

People with SMS have developmental disabilities, yet they retain knowledge for electronic gadgets so well that parents often rely on their SMS child for technical support.

Seth, in Oklahoma, sat on a gate in front of an oil field, while wearing a black cowboy hat and holding the reins of his horse.

Seth’s mom, Tara, and I joked that our boys were “twins” who were somehow born to different mothers.

The common facial features of Smith-Magenis children can be eerily similar. People with SMS also tend to be short in stature and have small hands.

Sam, in England, was supposed to wear his shirt at tea time. His mother, Salli, sent me a photo of Sam on the couch while holding what appears to be a coffee mug.

I could not see a silver tea set or finger sandwiches being served by a butler.

Obviously not tea time, but I appreciated Salli’s effort.

Sam has practiced so hard stacking cups (red solo cups into a pyramid shape) that he has mastered the skill.

Usually, the low muscle tone creates a frustration for the kids.

However, when a child with SMS becomes fascinated by an activity (stacking cups, riding a bike, jumping rope); they show a strong determination to achieve that goal.

Ironically, the gift Yolanda brought back to Holland for her son Tijmen was a red solo cup.

He collects them and appreciated that souvenir more than a toy or stuffed animal.

She and I shared many of the same concerns for the siblings of our special kids.

Yolanda decided to bring her typical son, Beerten, to the conference with her.

Despite the language barrier, my sons and Beerten were able to play Minecraft and baseball for hours – bonding with a stranger who understood what it meant to have a brother like Garrett. November 17, 2014 is World Smith-Magenis Syndrome Day.

And I am so very grateful for the privilege to know and love a “whole new group of people (I) would never have met.”

For more information on Smith Magenis Syndrome in the UK visit the Smith-Magenis Syndrome Foundation UK

Epilepsy: The Forest Fire

Aaron was a happy little boy, he loved his football and he had an answer for everything.

He had started nursery in the September of 2008 and was doing really well. His nursery teachers said he was a joy to have around.

The Christmas after he started nursery through to Easter was difficult for us, Aaron was very unwell during this time.

He had a chest infection, a persistent cough and although he was still his happy playful self, things got worse and he was vomiting up to 40 times a day.

My concerns were dismissed; ‘it’s viral’ ‘you’re worrying too much’ and even ‘he’s playing for attention.’

But, one morning I woke to find Aaron clammy, waxy and bubbling at the mouth – we headed to the hospital.

Aaron was admitted for 5 days with low blood sugar but after asking again for a reason for the vomiting and coughing they went on to do various tests and a CT scan but he was eventually discharged – we were none the wiser.

That very night, Aaron had gone upstairs, I called to him but he didn’t respond.

I found him in the bathroom having what I now know to be a seizure.

We spent over a year trying to understand what was happening with Aaron even spending time in PICU.

They’d flown in a Doctor from Birmingham Children’s Hospital and we got a diagnosis of FIRES disease.

Aaron’s doctor had worked in Melbourne where she had seen a case similar but extremely rare.

She decided to test Aaron and we waited 12 weeks to be told this was an auto-immune/post viral related illness.

FIRES disease was only newly diagnosed a few years previous and with no known cases in the UK so we had no clue what we were dealing with (neither did the doctors), in fact the not knowing what was ahead of us has probably got us through the last few years.

When Aaron had a viral infection the previous year, his immune system had gone into overdrive and started attacking his body,which resulted in his seizures, Great Ormond Street hospital decided because of how rare and destructive this illness was that they would have Aaron as a primary patient, and he is now a candidate for the first UK trial for the medical Cannabis treatment due to start 2015.

There is only one other case of FIRES disease in the UK and a very small number worldwide but we do draw strength from each other and learn from each other’s experiences.

It’s difficult to think back to the early days after Aaron’s diagnosis, he was very aware of what was happening to him and he was frightened.

He would say ‘the fizzies are coming’ when he felt his seizures and ‘am I going to die?’ – Which was heart-breaking for us.

FIRES disease is just that – a fire that swept through his brain, we watched helplessly as his speech disappeared, his understanding, his colourful and bright personality his mobility – everything was destroyed.

Our little boy, who once had the nurses wrapped around his finger with his cheek and his charm was slowly being destroyed with FIRES.

Aaron is still regressing, his epilepsy is causing other unpleasant conditions; a psychosis type disorder and Eases,which causes Aaron’s brain to become overactive when he is tired.

This only affects 1% of people who have epilepsy and sometimes I do think to myself ‘What are the chances?’

We have to remember that Aaron is still here, he’s still with us and I can still see a little spark in his eye – it’s what keeps me going and seeing his big infectious smile, but at Birthdays and Christmas we do grieve, we grieve for the little boy Aaron should have been, I’m sad that Adam doesn’t have an older brother that he can play with, I’m sad that Aaron doesn’t have the life he should have had and I’m sad that I can’t watch our wedding video because it shows a laughing, chatting, running Aaron.

I find it difficult to have ‘pre FIRES’ photos of Aaron around or any of his things from his first 4 years.

They’re stored away and I know that in the future there will be a time that they will represent precious memories but at the moment while we fight for Aaron, they’re just too sad a reminder of what could’ve been – what should’ve been.

FIRES disease means having a plan but not being able to plan.

I know this doesn’t make sense but it’s our life. We have a plan for Aaron, it does change depending on how he is and at one stage it was palliative care plan, but we always have a plan.  On the other hand, we can’t plan ahead – we can’t plan days out, holidays or even a trip to the shop.

Aaron may not have visible seizures everyday but when a cluster of seizures hits we know we’re in for a bit of trouble – this can happen every 7-10 days and we get no indication that a cluster is on its way, just recently he went into status resulting in him spending time in PICU on a ventilator and in an induced coma where he seizured for a continuous 8 days.

People don’t always understand what it means not to be able to plan ahead, it means we let people down – a lot.

We don’t mean to but it’s just the way things are.

We’ve lost a lot of friends over the years, I think they just got tired of asking and tired of us cancelling.

But we’re thankful for those that are still around and the support of family – even though looking after Aaron can be a scary experience.

We’re an extremely happy family, one that’s been strengthened by what we’ve been through and for that I’m thankful.

I hope that by sharing Aaron’s story we’ll help raise awareness of the devastating impact of epilepsy. And from one mum to another, ‘it’s only viral’ is not good enough if you are worried about your child – trust your instincts.

Febrile infection-related epilepsy syndrome (FIRES) is a severe brain disorder that develops in children after a fever.

This condition results in sudden seizures and leads to declines in memory and intellectual ability.

FIRES can also cause psychiatric disorders or problems with motor skills.

The cause of FIRES is unknown, but may be related to infection, genetic susceptibility, an autoimmune disorder, or a problem with metabolism.

Treatment involves anti-epileptic medications to manage seizures, but they do not usually work well.

Epilepsy: The Jigsaw Destroyer

Doctors are unsure that this is Nicole’s full diagnosis and she continues to undergo genetic testing in the DDD Study. Nicole had a lot to live up to, her older sister Natasha met all of her milestones early and people often remarked on how advanced she was.

Although Nicole wasn’t quite so advanced, she too met all her milestones even if she did walk a little late. Our Health Visitor was always pleased with her progress.

Nicole was doing everything I expected her to be doing, toddling around, chatting away and generally getting into mischief.

Life was good and I had very little to worry about.

Then came that day, a day that will be imprinted in my memory forever.

At 18 months old, 17 days after her MMR jab Nicole had her first seizure.

I think of Nicole’s life like a jigsaw – one that we had lovingly built, watching this amazing picture appear of a beautiful little girl, with an infectious smile and endearing manner.

Then along came epilepsy and slowly it destroyed that jigsaw starting in the middle and methodically picking out the middle pieces and throwing them away without any regard for what it was leaving behind.

We watched helplessly as our little girl lost all those skills she’d worked so hard to learn.

18 months later, all that was left of the jigsaw was the outside pieces.

Nicole was a shell of the little girl we once knew.

She’d lost all of her speech and all of her self-help skills, she could no longer feed herself or play with toys as you’d expect her to.

Over the years we’d tried desperately to replace the pieces, and for a few days, weeks or even months, we’d see Nicole regain some of what she’d lost.

But then a cluster of seizures would hit and like a tornado, sweep through the jigsaw blowing away the pieces we’d searched so hard to find.

So since the age of 3 Nicole has made little to no progress in terms of her development.

We have tried all licensed and unlicensed drugs available, the Ketogenic Diet, VNS, alternative therapies, prayer and faith healing.

We’ve been to Great Ormond Street on numerous occasions but surgeries have been ruled out. In the early days, we used to count the seizures.

Once we got past 70 we thought what’s the point?

Today, we very rarely count them.

Nicole has clusters of seizures of every type – from startle seizures caused by noises you and I wouldn’t even notice to tonic-clonic seizures that often result in a hospital visit.

Nicole’s seizures, 13 years later, still aren’t controlled. But, our lives are controlled by the seizures.

We can’t leave Nicole alone, even for a second, and as she gets bigger it feels like our world is getting smaller.

A drop seizure in 3 year old is very different to a drop seizure in a 16 year old – there is less space to fall in, there are more obstacles in the way, she’s harder to catch – the risks are so much greater.

We always have to think of what is best for Nicole, she loves a party but a late night or a lot of noise will definitely lead to increased seizure activity.

Do we take her ice-skating knowing that she loves it but risk her body temperature dropping or picking up a bug which again will result in a cluster of seizures.

Over the years we have learnt so much.

We’ve learnt that clusters of seizures are part of Nicole’s life – messing with medications isn’t going to help so now we know when to say no to the doctors.

I recall a time when Nicole was in hospital and a nurse went to administer some calpol, Nicole rolled her eyes.

The nurse jokingly told her off, ‘don’t be rude young lady’, I had to explain that she was having a seizure.

There are still days when I don’t trust myself, Nicole’s seizures can be so discreet – is this the usual run of the mill day or is this masking something more sinister?

I’m on constant high-alert. Nicole takes up a lot of attention and my energy and I often forget the impact that her seizures have on the rest of the family.

It’s not only the distress and helplessness that her siblings feel watching her have seizures but it’s also all the other things they miss out on like cancelled activities and how it affects their day to day lives like late school runs, making their own lunches and so on – they’ve had to grow up very quickly.

Grandparents also miss out, they don’t have the same opportunity to do all the fun things they’d looked forward to like special days out and buying treats.

We spent many years feeling very isolated as a family, the information and social networks that are available today simply weren’t there when Nicole was young.

I’ve found the support of other families in similar situations very helpful, it’s also good to hear about the medications and treatments that other children are trying.

I remain hopeful that a new treatment for Nicole and the many other children like her is just around the corner. In the meantime we continue to battle with epilepsy – the jigsaw destroyer.

For more information about Lennox Gastaut Syndrome and the DDD Study. https://www.epilepsy.org.uk/info/syndromes/lennox-gastaut-syndrome http://www.ddduk.org/

Communication Breakdown: The Stress and Guilt of Having a Non-Verbal Child

There are times when Oscar is upset and obviously frustrated as there is something wrong or something he wants but I am unable to understand what it is.

He is frustrated with me and I am frustrated with myself, as I feel I should know what it is my child wants.

The same happens when he is poorly. The only tell tale signs that he is feeling unwell is that he will be a bit quiet and have a temperature.

The rest is then guess work.

Does he have stomach ache, earache, headache, something else?

I do not know and Oscar cannot tell me. This is the worst situation to be in.

We are working on Oscar’s communication skills and he has become very good at eye pointing.

If we ask Oscar where someone or something is, he will eye point to the person or object, if he knows.

Although, we do not know fully know what Oscar does and doesn’t understand, we think he understands a lot more than we give him credit for.

Over the summer we borrowed a ‘Big Mack’ button from SALT.

This is Oscar’s first step towards communication. 

You record a word or sentence into the ‘Big Mack’ and then encourage your child to try and hit the big button and the device will play the word or saying you have recorded into it.

I recorded ‘bubble’ into the device and when Oscar managed to hit the button and the device played the recording I blew some him bubbles, which he loves.

I did the same with some of his musical toys.

I recorded ‘telephone’ into the device and then when he hit the button I pressed the buttons on his toy telephone so the music would play.

Oscar seemed to really enjoy using the ‘Big Mack’ and uses one in school. We are hopefully going to get one for home, so Oscar is doing the same things at home as he is at school.

We have also downloaded an App called Grid Player.

This is an App where people can choose what they want to say and the tablet will say it.

The user can form proper sentences about how they feel, what they want to eat, what they want to do etc.

This App is a little bit advanced for Oscar yet, as we are only just starting on our journey into trying to communicate with each other better.

We have encouraged him to use it though as hopefully this App or similar ones will be of use to him in the future and this may possibly be his main form of communication.

Oscar really seems to enjoy using the tablet and the apps. He especially likes it when we get the App to say ‘I love chocolate’ because he does!

Keep me updated

Great Sensory Apps for Kids with Special Needs

Oscar has managed to get the iPad doing things that even I didn’t know how to do.

There are some Apps that he really seems to enjoy using which you may find useful for your child as well.

Color Dots

A circle floats around the screen which encourages eye tracking. You then have to touch the circle and it will ‘pop’.

Then two circles will appear. Again, they float round the screen you try and ‘pop’ the circles and then three will appear and so on until you end up with lots of floating circles for you to pop.

Oscar really enjoys this app and loves the noise the circles make when they ‘pop’.

Get Color Dots

Warning: Not that I have really played on this app, it’s Oscar’s after all, but it can be highly addictive!

Fluidity

Fluidity is a great sensory app. The best way to describe this app is it is basically like a water effect with bright colours in.

When you touch the screen the colours go brighter and move round the screen faster.

I am not sure why but this app does remind me a bit of a lava lamp.

Get Fluidity

Fingerworks

This is another good sensory app where lots of tiny lines look like they are swimming around the screen.

When you touch the screen you can move them where you want to and make lots of patterns.

Get Fingerworks

Pocket Pond

This one is basically a pond with fish swimming round and you can add extra fish, lily pads, dragon flies.

If you touch the screen you will hear the sound of water and the fish swim away and hide before coming out again.

Oscar really enjoys playing this one as well and wonder if the sound of the water is calming for him, as he loves water.

Get Pocket Pond

I hope you have found this list useful. Of course there are so many other apps out there but I would say these are the ones that Oscar really seems to enjoy.

Please feel free to share any suggestions that you may have.

 

“No, Actually, Having a Disabled Child Did Not Ruin My Life. Here’s Why.”

There was a lot of devastation, hurt, blame, denial and grief that followed this time. But now when I think about this, I think; why?

Why would having a disabled child ruin my life?

Oscar was born prematurely and was very poorly when he was born. We did not know if he would survive. If anything had have happened to him, that would have ruined my life.

I will admit that I did not want this for Oscar, no parent wants their child to be ill or disabled, but, Oscar has only made our life better. He is so beautiful and special.

There is not a day goes by where I am not thankful for my son as I know that some people who have been in similar situations are not as lucky as me.

Some people do not get to take their babies home.

I cannot think of anything worse than this.

Oscar is my absolute pride and joy, the love of my life. Despite everything he is such a happy and loving little boy. Although, at times things can be challenging, we just have to get on with it. Nobody said life would be easy. And, even when times are difficult, a smile from Oscar makes everything worthwhile. Oscar’s smiles can melt even the hardest of hearts.

For me, I would not change Oscar for the world, as he would not be Oscar. To me he is perfect, even if the world sees differently.

But, would I change things for Oscar? In a heartbeat.

At the end of the day it is Oscar who is disabled, not me.

If I was not prepared to do everything I can for my son including looking after him for the rest of my life, then as far as I am concerned I should never have been a mum.

So, no, having a disabled child has not ruined my life.

I am honoured to be Oscar’s mum and I couldn’t be more proud to say that Oscar is my son.

 

Cerebral Palsy Doesn’t Care What you can Afford For Your Child

Our physiotherapist does a lot of work shops with the CP kids in the rural areas.

They come from far to see her.

She gives them advice to help them at home.

They see a physiotherapist once a month and never the same one. This is what the government give them for free.

They can’t even feed their kids in the proper way.

They carry them on their backs like small children but they are over the age of 10.

There are so many things on the market these days and you don’t know what do get where. What is good for your child and what is not?

Our physiotherapist is my go-to lady.

She always knows where to go and what to do.

Even on the emotional level. She has been through this with so many other parents she is a pro by now.

We bought Jade an Upsee and that is the best investment we have made.

She loves it and it has really helped with her head control and putting weight on her legs.

We still have to get the GoTo seat for her but at the moment we can manage without it.

If you have a pram for your child a simple sponge cut to the right size can hold your child up in the right position.

Or an eating chair can also be converted. Instead of paying a lot of money for something that can be made.

Even the bath rings can be converted.

My husband is very handy when it comes to things like that.

I found the highest back bath ring and then my husband took her Bumbo (which she never used) and cut it in half to use for a better back rest. It works like a bomb.

I went to get an anti-slip matt and there is a converted bath seat for a CP that can’t keep herself up.

Did Having a Son With a Disability Make Me a Better Parent to His ‘Typical’ Brother?

I’ve never said this to anyone but, boy, can my typical 4-year-old drive me crazy sometimes (most of the time).

I suppose I feel I can’t really say this out loud because I should just be so happy (and relieved) that he is just that, a typical 4-year-old.

Don’t get me wrong – I absolutely am!

But my goodness, no one warned me that he’d ask questions incessantly.

Or that he would have the ability to destroy a tidy room in seconds; that he could empty cupboards at the speed of lightening; that he would be so headstrong and determined; he’d knock my ironing pile over, just as I’d emptied the basket; or that he’d say the most embarrassing things in front of complete strangers.

And nobody warned me that it would be just the tip of the iceberg.

He drives me to distraction, but I love it and I wouldn’t change him for the world.

Every little bit of mischief, cheekiness and downright naughtiness is always under-pinned with a feeling of sheer joy that he is doing all these amazing things with such ease.

Things that his older brother can’t do and probably won’t ever be able to do.

I definitely think having my disabled child first gave me ‘something’ – I don’t quite know what – skills, patience, a different outlook…to parent my typical child differently than I would’ve if he’d been my first.

I imagine myself shouting, snapping and losing patience easily but life takes on a different perspective with a disabled child.

A tidy house, an immaculate garden, worrying about other people think – it just doesn’t matter anymore.

Our home is about fun, laughter, and games – who cares if we chip the paint on the walls playing wheelchair tag or we use the wrinkled bed sheets to make a den big enough for an amazing little boy, his big brother and his wheelchair.

The 3 People I Always Meet When I’m Out With My Disabled Child

Over the past 5 years I have noticed the number of strange encounters I have when out with my disabled child far outweigh those that I have with my typical 4-year-old.

Actually, I’d go as far as to stay nothing strange or out-of-the-ordinary ever happens when I venture out with my youngest child.

However, strange encounters are certainly a weekly, if not daily, occurrence when I take my 5-year-old out in his wheelchair, whether it is for a walk around our neighbourhood or just to the local supermarket.

I tend to put the people we meet into three quite distinct categories (it just keeps me amused).

The Nice

Firstly, there’s the people who don’t bat an eyelid at a little boy in a red wheelchair, flapping his arms, making strange noises, and shaking his head wildly.

They nod, smile, pass a polite comment ‘cool wheels’ or ‘great smile’ – they’re my favourite type of people.

Life is normal when we encounter people like that.

The Terrible

The second group are those people that even in the 21st Century still seem amazed that disabled children are allowed out into our communities.

These are the ones I have most fun with.

There are the ones who stare, not just looking for slightly longer than is polite, I mean they really stare, they stare so intently that they walk into lampposts, cars or other people.

I’ll often exclaim very loudly to my son (who is completely oblivious to this by the way) “Oh my goodness that lady in the red coat thinks you’re gorgeous!” which causes much embarrassment to them and amusement to me.

Along similar lines are the parents who quickly pull their inquisitive children away from my child.

I’d like to tell them it’s not contagious, and in fact if they stopped and explained to their child a little bit about disability that might help them grow into well-rounded and accepting young people – but these people are normally gone before I get a chance.

The Terribly Nice (emphasis on ‘terribly’)

And finally, there’s the group of people who consider themselves to be so ‘disability friendly’ that they make a beeline for me and my child.

These people are the worst type of people to meet and they have the ability to spoil our days out.

They tell me about some random, distant relative with a learning difficulty; they ask inappropriate questions about my child’s disability and his future – questions I struggle to contemplate myself let alone share with a complete stranger.

They wax lyrical about how amazing we must be (we aren’t), they ask how do we cope, without waiting for the answer.

They cause my child to get distressed as they try to hold his hands (which he hates) and make me stand still (which he also hates) – they upset my day.

On one occasion, a man brought his dog up to my son and said ‘he’s brilliant with kids like yours, he used to be one of those therapy dogs’.

The dog then started barking loudly and snapped at another dog walking past resulting in a sensory meltdown from my little boy and an abandoned family day out at the beach!