Raising Kids with Special Needs – The Popularity Contest

I do recall reading the title of a blog and about how they did not want their child to be the purpose of some feel good, raise to fame ordeal.

It stated how they wanted their child to be treated like any other kid would be.

While I can agree on some extent to this, I do not agree to all of it. I will tell you why…

Although I want nothing more than Oliver to be treated with the same respect and courtesy as one would to any other child, he is inevitably different than most kids.

There is no denying that although I would love for him to go out and about playing with kids as kids do, I still need those same children running about to take precaution when he moves about.

I still need them to understand that he does have different ways of getting around and maybe going out and climbing trees is not something he can do on his own.

With social media being so popular and kids and adults getting famous by videos on YouTube and such, it is easy to question ones’ intention when posting something.

Like asking your daughter who may have a diagnosis to the prom.

I always catch myself questioning whether the countless people we come across who so adoringly coo over how cute Oliver is, would still be doing the same if he wasn’t in braces or a wheelchair.

But I have realized that I do not want to always have to question things day in and day out.

I would love to trust that one day, whether it made it viral or not, that a girl or even my own boy will ask another out to prom and it not be questioned.

I don’t want Oliver to ask himself whether they said yes because they, “felt bad”, or if they truly thought he was a cutie – which he is!

I want Oliver to experience love, happiness, and all the normal heartaches we all went through because we learn from that.

I do however want people to understand that he is different in his own unique way and that is what makes him so special to us all!

We sometimes associate the word special with being bad and different, because we always see it linked to “special needs”.

But to me, it is one of that many attributes Oliver carries.

He loves to hold my hand whenever we are laying down together, and that is special to me.

He can get from point A to point B in his wheelchair just as fast as his older brother Aaden can running, and that is special to me.

Oliver has grown up with spina bifida not knowing that it isn’t, “not normal”, and he learns and lives because he does not know any different.

I do not want him to ever have to question why he is so special to me or others.

Hunter Syndrome Factsheet

There are roughly 2000 worldwide living with Hunter Syndrome.

There are varying degrees of Hunter Syndrome, mild and severe.

People living with (severe) Hunter Syndrome are missing an enzyme.

Others living with (mild) Hunter syndrome the enzyme is damaged or partially there.

That enzyme – is responsible for helping break down certain complex molecules.

When that enzyme is missing or damaged the molecules build up in harmful amounts, eventually causing permanent, progressive damage.

This missing enzyme (or lack of enzyme) does so much damage. It affects appearance, mental development, organ function and physical abilities, basically every single part of the body and mind becomes damaged over time.

It is a progressive, terminal/life limiting condition.

There is not a cure.

There is a treatment which slows down the progression of the syndrome.

Some children receive a man-made version of the enzyme is infused weekly, this looks to the untrained eye like dialysis. It takes 3-4 hours each week. It eases the symptoms but does not stop it.This is called Enzyme Replacement Therapy–ERT.

Children with the severe form of Hunter Syndrome rarely make it to adulthood.

Currently there are ongoing trials, in layman’s terms; they are trying to cross the blood brain barrier using the same drug; the hope is that this will slow down the regressing in the brain. To date, it is successful.

For more information on Hunter Syndrome please visit here.

What Denial Looks Like In A Special Needs Parent

Who is so scared that she believes in every stigma that has been subconsciously placed inside her mind over two decades of life?

Stigma that exists ironically because of the fear many have of disabilities and differences?

It’s calling the agency providing services for your child, in your own home, and telling them this:

“I’m sorry, I no longer require services for my child anymore.”

I actually did this.

I called up the providers and told them to stop coming, stop helping my child.

She had been receiving physical therapy and learned to walk at 20 months old, finally!

A teacher was coming every week to work with her on some delays in fine and gross motor areas.

But I insisted. No more help, please.

She will be okay.

I still remember the therapist’s long pause and response: “Are you sure? I don’t think we know everything yet.

These services could really help her progress even more.”

“No, that’s okay,” I said, staring out my apartment window in my little kitchen, pulling down the aluminum blinds with my finger, “I think she’ll be okay, really.”

The parent has the final say, so my word was bond. The services went away.

If I only knew how much I would need them just a year later, and how difficult they would be to get back.

Denial. Declaring something to be untrue.

Problem was, I didn’t even know what the truth was yet concerning my child, so I was declaring that the fears that still sat tucked away in my brain to be untrue.

I thought that if I declared them so, if I contradicted what others told me, that those fears would amount to nothing.

She turned two, continued improving in speech and other areas, but those little behaviors were still there.

Arm flapping, head spinning, and minimal eye contact and smiling.

Nope, they will go away, I said every time, denying the truth.

She was still scared of many things, like stepping off a curb, or climbing a ladder at the park. She put everything in her mouth.

No big deal, I rationalized. Denial had paralyzed my mind.

When she was 27 months old, I discovered I was pregnant with my second child. In preparation for his birth, I tried potty training her myself.

Total disaster and even more things emerged during that time that caused concern.

Nope, nothing to worry about, I told myself. She will learn when she is ready.

Her baby brother was born with his own set of health challenges—a blood disorder called mastocytosis.

Suddenly I was shuffling between denial of my first child and a high level of care for my second.

Things were falling apart. Denial can only last for so long.

You start to unravel, like a tiny thread on a sweater, being pulled away slowly and steadily.

Eventually, you reach your breaking point…

More Stock Added to the M&S Range of Clothes for Kids with Special Needs!

Marks and Spencer has this morning released more lines and stock in its new range of sleepsuits and vests for kids with special needs.

Marks and Spencer  has extended the age range of bodysuits and sleepsuits up to the age of 7-8 years.

The full range includes 16 styles in white, pink and blue colourways – including a bodysuit that has been adapted for feeding tubes.

The UK retailer worked with disability charity, Scope, to develop the range of clothing for kids with special needs with was in response to a customer request from a special needs Grandparent.

The collection is 100% cotton and prices start at £3 for a sleeveless bodysuit and £7 for a sleepsuit.

Raising Kids With Special Needs: If He Never Says, ‘I Love You’

His mind functions many years younger than his body. He struggles so much just to convey basic needs such as hunger, thirst, pain or upset.

Yet without any doubt I know he loves me deeply.

I know he loves me when he wakes up and smiles at me.

He rarely gives others eye contact so that fact he overcomes this to look at me briefly every morning shows his emotional bond and trust with me.

His eyes tell me he loves me, even if the words, ‘I love you,’ can’t seem to come.

I know he loves me when he climbs into my bed in the early hours and holds me.

He wants to be close to me.

During the day he sits on my knee, places all different parts of his body into contact with mine and when he hugs me it is like he never wants to ever let me go.

His body tells me he loves me even if the words, ‘I love you,’ are impossible for his lips to form.

I know he loves me because he wants to be with me.

If I move from one room to another he follows me. He craves my presence and taps the seat next to him in the car to invite me to sit beside him.

He takes me hand to show me what he wants.

His actions says so much more than his language ever could.

He desires to communicate with me.

He knows I listen to him and care about him and he responds to that.

He hands me his iPad with Google on and expects me to know what images he wants to see that day.

He looks to me to support, help and understand him. He sees me as someone who cares deeply about him and he in turn cares deeply back.

His willingness to seek me out says so much. He can not call my name. He can not say he loves me.

But I know he appreciates me and that brings joy to my heart.

When he is upset he yearns for me.

He looks to me for comfort and reassurance. He knows I will ‘make it all ok’.

He knows I will look around to see what caused his upset and that I, ‘get’, his sensory issues and all the little things he wants around him to return his sense of well being.

He knows I listen to him even when he has no words to communicate.

He cries for me even if the words, ‘I love you,’ have to come from his heart rather than his mouth.

He shares a book with me.

Tonight it is about letters. He points to himself when we get to the letter that his name begins with.

And when we come to the, ‘M’, for mummy he points to me, flaps and giggles.

That is beautiful.

He actually knows I am his mum!

He knows who I am.

He wants to be with me and he wants to hold me and gain comfort and warm from me. He wants to communicate with me and he loves the sound of my voice.

In lots of ways the words, ‘I love you,’ are too easy to use and say. He has no ability to do this in words so he finds unique, beautiful and special ways to show me instead.

And I know he loves me…even if the words, ‘I love you,’ never come.

We’re Showing Our Disabled Daughter The World!

We’re lucky enough to have mountains, rainforest, beaches, caves, and urban treks right on our doorstep.

Before the little girls were born (they’re only eighteen months apart), we used to take bushwalks to waterfalls, or spend long energetic days at the beach.

These activities slowed a bit when the girls were little, but we always assumed that we’d be back to it once their little legs caught up.

Charlie’s Rett diagnosis brought with it a whole new set of expectations, but we’re determined that it won’t limit her – or us – wherever possible.

We often drive up to Mount Tamborine and wander along the Gallery Walk.

Sampling fudge and sipping coffees and hot chocolates in little cafes during winter, and licking ice cream and enjoying the lower temperatures of the rainforest during the long, hot summer.

The brilliant Upsee has helped us to include Charlie in these adventures.

Even with its help the longer walks to the falls have been beyond her reach.

Last week, we bought a second-hand hiking pack.

The family we bought it from assured us that they had traversed the Japanese mountains with their six-year-old daughter on their backs (obviously far more serious about their hiking than us).

Charlie is not yet five, and a good eight kilos lighter than their daughter had been at the time, so how hard could it be?

We paid their very reasonable asking price, got a quick lesson is how to fasten all the buckles and straps, and off we went.

The following day, we drove to Tamborine.  The whole family was in attendance, and Curtis Falls our destination.

Curtis Falls is a short two-kilometre round trip from the road – perfect for our first time out – and the rambler is rewarded by lush rainforest and an eventual endpoint of a clean,

clear pool fed by a fresh and beautiful waterfall.

It was a mild summer’s day with a light drizzle in the air, and we covered ourselves in insect repellent (along with sunscreen, this is the ubiquitous scent of Australia), strapped Charlie in and set off.


Charlie was incredibly happy, chatting and squealing and giggling her way through the forest.

We took about a thousand photos to mark the occasion, and will definitely be out there again soon.

It’s so important to us that Charlie is able to see and experience as much of what the world has to offer as humanly (and financially) possible.

I suspect we have a window of perhaps two years before we can’t carry her on our backs any longer, so we’d better make the most of it now!

Special Needs Parenting: Why Won’t They Help Us?

“Zowie do you know that there is carer’s allowance?” – Oh, no!

“Zowie – you can contact the ASD partnership for support and advice” – I see!

Thank you, thank you – From the bottom of my heart THANK YOU!

Society has a lot to say about the World Wide Web and social media; good, bad and the ugly.

I worship GOOGLE and am so grateful that I have this tool to aid in my journey and that Facebook has brought me to meet wonderful people on the autism groups.

Time and time again though I see the same introductory posts from people starting their journey and asking where exactly they can go to for advice and support.

I feel from peoples posts their frayed emotions; at the end of their tether, searching for answers in desperation…

• “Can someone please help?”

• “I read somewhere that…”

• “Does anyone know?”

• “I have heard that…Is this true?”

Why are we having to search for the answer to these questions online?

Why is there not by now an NHS pamphlet or webpage that you are given at the beginning of the process, with all your useful contacts to the agencies/support/entitlements?

Why are the professionals; who are making us jump through loops, stand on our heads and guess the winning lotto combination before they will consider our concerns –

not giving us the information post diagnosis that would make our lives that bit easier and transition smoother?

As if the stress of losing your sanity in SEN documents, assessment scheduling, phone calls and meetings is not enough.

Oh and let’s not forget the emotional strain within your relationship/marriage/family stronghold…No!

That’s not quite enough burdens to bear; we then have to magically know to ask at the right questions to get answers to get the things that we don’t know exist.

So for those that have come across this blog in their early days here are just a few of the things I have found out so far.

Some entitlements are means tested and you may not qualify (like me); but still, it only takes a phone call to check:

• Disability Living Allowance (DLA) can be claimed for children who have additional care needs (you can apply for this before the actual diagnosis)

• Child Tax Credit and Working Tax Credit

• Housing Benefit and help with Council Tax or Rates

• Carers allowance

• Manchester airport do an awareness scheme, a detailed visual booklet specific to each terminal which includes a wristband to alert staff to passengers with additional needs.

• Many cinemas have autism friendly screenings…yes!! No adverts

• A John Lewis store (Cheadle) has autism friendly sessions for children to book in and have a 1-2-1 shoe fitting session. Check availability at other stores

• The Trafford Centre Shopping Mall in Manchester have developed visual guides and alert cards for both children and adults with ASD (details on their website)

• The Family Fund Trust helps families of disabled children. They can supply grants for such things from holidays to washing machines.

• In most attractions you can get in free as your child’s carer when you purchase them an entrance ticket (see individual attractions, we were at “Ripley’s Believe it or Not” in London)

• Also at many attractions (we went to LEGOLAND Windsor) you can obtain cue jump tickets/wristbands to help reduce anxiety of waiting times.

There are many more I am sure; never be afraid to ask, there is no such thing as a silly question.

They (the powers that be) may not be eager to help us, but you can bet your bottom dollar another mum in your shoes who is living this alongside you will never tire to help.

Special Needs Parenting: The Perception of Honesty

When we were finally called through my son asked the Doctor, “Excuse me Doctor, what took you so long? I don’t like waiting.” She smiled and made small talk about this before we continued.

It made me think would she have been as pleasant if I would have asked the same question?

I have tried to list a few of the things (including what the little voice in my head is screaming at me to say in response), that have been said to me about my son’s autism by people who have typical children or no children at all.

From groups that I am a member of I know that these comments are common to other mums also:

‘It could be so much worse!’ Oh, could it? – Well that’s just swell. Tell that to my heart.

‘He doesn’t look autistic/like there is something wrong!’ Oh why; what does autistic look like, would you prefer something more visible?

‘He just needs a good hiding!’ Oh come here and let me beat the ignorance out of you while I’m at it then!

Now the above I’m sure are people’s honest perceptions/feelings of my son. These used to hurt me and I think that was part of my own feelings towards the diagnosis.

I can now appreciate these types of comments in the way they are delivered; I don’t think are maliciously intended.

Apart from that last one – no excuse for that comment! Yes that hurts.

Below are some other things that my son has said to others:

‘Can you please just stop talking? You’re really annoying me.’

‘Excuse me Doctor why are you talking so much?’

‘What’s wrong with your hand?’ (to a person with a club hand)

‘I LOVE your pyjamas.’ (to someone wearing a tracksuit)

‘You are so cruel for not helping me put my socks on.’ (To his TA after PE in school)

Now the above are my sons own honest perceptions/feelings of situations. I know he did not mean to hurt anyone’s feelings; he does not have a malicious bone in his body.

He had something to say and I suppose a wonderfully innocent part of his condition is that he has that freedom to say just exactly what he wants.

Here are some things that I know for a fact that I have wanted to say throughout my adult life;

but the world around me tells me that in fact I can’t, that even though it’s my honest perception it’s not acceptable to be this honest and quite frankly – its rude.

‘Could you please stop talking to me you are annoying me!’

‘What colour were you trying to dye your hair? – That really didn’t go too well!’

‘If you want to lose weight just stop eating!’

They say that Honesty is the best policy but all of the above remarks would only be acceptable though if I had a label/disability; then I would be excused for this behaviour.

The perception of honesty is in fact discrimination; if I have a medical reason to speak my mind then that’s fine but if not then it’s not OK, society says that as a, “normal”, person I should know and act better. It sucks being a grown up!

So I know that when my son tells me that he loves me to Jupiter, or that I have a big belly or that he doesn’t want to be visiting friends anymore and wants to go now – that this is the 100% truth.

It just makes me sad that other people’s perception of this honestly makes me try to teach him to tone it down and that in fact I respond by saying, ‘You can’t say that baby, its rude!’

Raising Kids With Special Needs: The Things Autism Makes Parents Do

**Sigh** The relief.

My anxiety levels are reducing and my breathing returning to normal.

I have just won an eBay listing of a lot of 24 Micro Machines and I’m moving onto the next which has four minutes remaining.

You see my granny bought Cameron a Micro Machines set from a charity shop; vehicles of any kind are his THING!!

You should have seen the joy on his face playing in his bedroom, which mimics a Toys R Us catalogue, with this £2 treasure with a handful of Micro Machine cars.

Then he asks, “Mum can I have some more Micro Machines for Christmas? 4 is not enough..”

And, as always, my response, “Of course you can baby, if you be a good boy!”

How hard can it be getting your hands on some Micro Machines…? Very, it would seem!

They are now classed as a vintage item after being discontinued in 2005!

So to cut a long story short so I can move onto the next example – after frantic bidding and all the family swapping what’s-app messages and eBay links..

…he now has 68 Micro Machines!

Charlie and the Chocolate Factory; again we all love the original from 1971 and some not so much the 2005 remake.

Well, Cameron as a chocolate lover found me watching the movie on a chilled afternoon and came and sat down – YES – sat down on the sofa, next to me I might add, and was enthralled.

Then the requests started, “Mum…can I watch it again?”

I’m now reaching for my phone and placing an order on Amazon for the DVD.

“Mum….. Can I go to the chocolate factory?”

Now this was a difficult one, what am I going to do now?

I sat down and explained to Cameron that this was a film and was not real, that he actually couldn’t visit the chocolate factory.

Now all my fellow autism parents–

You know that look that your child gives you when they look right through you and did not understand the information you just presented them with?

He repeated his question and I just replied, “We will see!” this bought me some time whilst he was now watching the movie for the 100th time.

A few years ago there was a bit of nostalgia for all things old school – luckily for geeky old me and now luckily for Cameron, I love a bit of this!

“Wow! There are actual Wonka bar replicas with golden tickets…………… I’ll take five”.

Present day and I now took to the Internet to try and find another of these bars but as with the Micro Machines or anything cool – discontinued.

So, again, me being a bit of a hoarder and mildly creative led me to a light bulb moment.

I bought a 30p bar of chocolate from the supermarket as it looked about the right size, I covered it in tinfoil with the golden ticket firmly inside, slid this into the outer sleeve and…voila, a replica Wonka bar of my own.

I packaged this up and drafted an email to Cameron from Willy Wonka himself, with an explanation as to why he could not visit.

I made this a little light hearted too; referring to the five children basically trashing the place, I covertly redirected him to Cadbury’s World with the promise that mum will take him in the holidays.

He got a golden ticket!!

I wish I could attach the video of when he opened the Wonka bar and found his golden ticket; imagine the moment Charlie Bucket opened it in that 1971 movie, starting with the top corner – Cameron did the exact same.

He insisted on taking this into school and showing his friends etc…BUT the autism never too far away, very matter of fact: “Eerrrmmmmm mum this says we have to go to the factory on the 1st February at 10am SHARP.”

OK so my plan had a few holes!

I’m only human and can only doctor this so much.

Big Ben………. or just Ben!

Lastly; there was the time that school were worried that they were struggling to engage Cameron in the learning of, “The Great Fire of London.”

Vehicles were always a way for school to try and engage him in learning but there were no vehicles around in 1666.

He told me that he didn’t know anything about London and that he had never been but would really like to go and see Big Ben, “Or, I could just call him, “Ben”, mum?”

So I took him…

I promised that if he tried hard and concentrated on learning about London then we would go on his favourite train ever, the Pendolino and go to London!

So my point is, the above examples are just a few of many occasions where I feel that saying NO to my autistic child was just not an option,

where I needed to up my parenting game.

Some I am not equally as proud of are:

• Chocolate for breakfast

• Using Coca-Cola as a bribery tool

• Letting him interrupt conversations

• McDonald’s everyday for who knows how long (not to face the meltdown of saying no)

I excuse my actions as not making him spoilt or not understanding the meaning of no but more.

Whilst he still grows and faces other struggles outside of my control, should I not try a little to go above and beyond to try and meet/exceed his expectations where I can.

To try and instil happy memories so that these one day out way the sad memories from autism that I am sure we will endure.

Please think of me working towards my current promise of a Disneyworld trip…

I know, and you know there are things that autism makes US do, not only our children.