I Just Want to Protect Him…

The joy didn’t last!

Now, Cameron is quirky and when he gets excited can flap around and can be quite dramatic and loud.

This clearly became too much for the boys very quickly.

A few occasions after he had gone out to play he had returned inside after five or 10 minutes saying they had gone in to have their tea.

Then as we were returning home one evening I saw the boys notice the car as they were coming out of one of the gardens, doing a complete 360 and going hiding in the garden.

Cameron had not seen this but I realised in that moment that they were hiding from him.

Cameron then spotted them and asked straight away can he go and play, I told him that the weather was not great and it was tea time.

This then continued for a few occasions where I was keeping him inside when he could hear them playing outside.

A week or so passed and my family had said, let him try. Don’t force him inside, kids will be kids.

So I let him go outside again, he took his ball and was playing on the green.

As I was watching I noticed Cameron go into the road and I shouted that should I see him do this again then he would be coming in.

I stood out of view and watched one of the boys pick Cameron’s ball up and throw it into the road.

As he went to retrieve it I went out and asked the little boy why he would do that and that it’s dangerous (albeit a quiet avenue).

He had no reply.

My son was heartbroken that I had made him come inside, I told him that the boys did not want to play with him and were trying to get him into trouble and that friends should not do that.

The boys don’t play outside our house that much now or even within ear shot.

I have seen them look towards the house and run past to go and play at the bottom of the street where Cameron won’t hear them.

What can I do?

I don’t want to have to explain that he is different; why should I?

I don’t want the label to isolate him. He has some wonderful friends at school and I try to go above and beyond to grow those friendships – but what kid can’t play outside because he won’t be included?!

So again I’ve left it and avoided it for about a month.

This week we have had some scorching weather and I heard the kids out. Cameron asked to go out and play and I told him he could go and have 10 minutes.

Sure enough this was enough time for them to go and make their getaway and go and play in a garden directly opposite our house without him.

He asked could he get his bike out to ride around the green. I beckoned him over and said:

“Cameron your friends have left you again, look they have gone over in that garden to play on their own. Would you leave any of your friends out and not play with them” – he shook his head.

This is what I hate about Autism; that my baby is different and even though he conforms and is successful; and even though people are becoming more accepting of disabilities – we can’t control the situations all the time.

I just want to protect him… but I have to let him experience growing pains.

Autism: Myth Busting

Upon his diagnosis at age four, yes it was scary but it was also such a relief, there was now a reason as to why my child was not the same to others of his age and in fact it wasn’t my fault.

Throughout our learning journey I heard and read a lot of myths about autism and many are unfair.

I understand that it’s like anything different or unknown; people do not understand it and like many myths until they are quashed then people are none the wiser.

So I thought I would quash a few of the most widely heard:

1. People with autism don’t want friends

People with autism struggle with social skills/ social situations. This makes it difficult for them to interact, not that they don’t want to, they just lack the confidence.

In fact my son has been upset on a few occasions when children didn’t want to play with him.

2. People with autism can’t feel, express or understand any emotion, even happy or sad.

It doesn’t make them unable to feel these emotions, it just makes the person communicate emotions (and perceive your expressions) in different ways.

They struggle to read facial expressions so cannot always respond in the correct manner. My son makes us laugh so much but becomes paranoid at the laughing and misunderstands this as aimed at him.

3. People with autism are all geniuses

My son is an average performer in school, working to the national expected requirements. However, he does know a lot about mechanics for an eight year old.

I have found that those with autism just have extraordinary passion and enthusiasm for something meaningful to them. In our house its vehicles.

I do know others with autism that have amazing unique qualities that make them super intelligent, but it’s not guaranteed.

4. Its only children who have autism

It is not only children it affects. Those children grow into adults with autism.

5. Autism is caused by bad parenting

Time and time again I hear that children are classed as naughty, difficult, unruly or undisciplined.

I thought for a long time that my child was naughty and blamed myself, this is not the case and once we understood that my son’s difficulties were frustrations and an inability to communicate it was a revelation.

6. The prevalence of autism has been steadily increasing for the last 40 years

It’s not that there are now more people with autism, it is now a case that it is understood more.

As there is more understanding, there is certainly an increase but people with autism always existed.

They now have a medical label which means that the number of people with Autism can be counted and considered.

What Are The Odds?

I often think back to my pregnancy with Cameron, sometimes with critical thoughts of how those nine months were and did I do anything wrong to make my baby how he is today.

We are our own worst enemies and although professionals can tell you:

“It wasn’t anything you did!”

“There are genetic elements at play!”

“You can’t change what is!”

…It doesn’t make the thoughts of, “What if..?” or the pain go away.

It is four years since our diagnosis and as a whole we are in such a better place as a family unit.

Cameron is doing well at school and surprising us at every turn; work is great; we have bought our first home and we are even picking out a new car… But there’s something missing.

My thoughts have moved on now from the guilt of my first pregnancy to the thoughts of, “Should I put the family through another?”

It’s a thought that I have postponed over the years for one reason or another.

My biological clock is now ticking so to speak; society tells me that past thirty I am a mature mother and my eggs are depreciating.

I would like to have another child so that Cameron has a sibling; as the eldest of five siblings myself. More selfishly though to satisfy my maternal urges.

There is however a strong force at play; holding me back, my very own ball and chain.

You see in addition to autism my son has a genetic condition with his eyes, Macular Dystrophy with signs of Retinitis Pigmentosa (RP).

My brothers each have these conditions to a degree; one is just manifested in severe short sightedness but the other is in a degenerative form that by Cameron’s age meant he was already blind in one eye.

Cameron is lucky that his so far do not show signs of any degeneration or that the RP elements are microscopic.

We are waiting for genetic counselling to see if this is an X linked condition, as this means there is yet potentially another thing for me to consider should I choose to have another child.

I have written in a previous blog that if you have a child with autism then there is a 1 in 20 or approx 5% chance that your second child with be on the spectrum.

The eye condition if confirmed to be an X linked recessive condition; for me means that each pregnancy also has a 1 in 4 risk of having another affected son.

So when I am asked, “Are you, or, when are you having another?” My mind just freezes, my palms go sweaty, my heart aches.

The answer is just not that simple and I lie… a lot! I play it down that I actually don’t want another child.

If you ask my husband he would tell you that I would have another child now, this very second and he is not wrong.

Surely then this should be my instinctive and instant response then – yes/now!!

The reality though is the longer I think; the longer I have the chance to list the things to talk myself out of it, to reel off the excuses as to why this is a bad idea.

– Would Cameron cope with such a big change to his routine?

– Would I cope becoming a mother with an almost 10 year age gap in children?

– The house isn’t big enough, we would need to move!

– Childcare!

– What if it’s another boy?

– Will the baby be OK?

– Could I mentally cope with another potential disability?

In short no; I know I wouldn’t cope, I know that I don’t have the extra energy to do what I do – doubled.

I selfishly don’t want the heartache of another set of diagnosis days, internet researches, swatting up on medical jargon.

Dare I say without being frowned upon by society that my heart wants a typical child?

I take to the internet and I search for percentage rates of genetic conditions being passed onto my offspring.

I’m not much of a gambling person, and yet here I am trying to make a decision to gamble with potentially another of my most prized possessions.

So…… what are the odds?

Do I consider the odds to be against me at a 1: 4 or for me with a 3:4.

Painfully – no one knows!

How Do We Let Go… Even Just A Little?

The weather had been glorious for a couple of days; I returned home from work, and backed up onto the drive.

I heard my son’s voice all loud and excited but not coming from inside the house, “Hi mum, I’m playing on the green with my friends,” as he rushed over in my direction.

I smiled nervously as he ran off again a few meters away.

He was playing with three young boys that live on our street, I’d say a couple of years older than him who we have in the past exchanged pleasant smiles with.

He has asked to go out to play in the past but I always said no.

I felt instantly sick and anxious and my mind went into overdrive:

“What if they are horrible to him?”

“What if they don’t include him?”

“Should I go and tell them he is autistic?”

“Should I go and stand and watch them play?”

“I know, I’ll give them all a treat!”

So I went into the house where the door was propped open and was greeted by my granny, she said, “Don’t worry, don’t shout, he wanted to play with them and we can safely see and hear him with the door open!”

I know that she’s right but I couldn’t rid that tension from the pit of my stomach.

I grabbed them all an ice cream from the freezer and a fruit shoot drink each and walked out to them, “Here you go boys, a nice treat for playing nicely.” I told Cameron that I would prepare his tea and at that point he could come in.

I returned to my house and stood in the entrance and took a few minute to listen to them play:

“Let Cameron take a shot,” said one of the boys.

“Cameron you stand over there and kick the ball into the net,” said the other.

My baby, well, not baby – he’s 8 in a few days – my young man is playing outside for the first time, he is playing with people that don’t know about his condition and he is being accepted and acknowledged.

Yes, OK he is the loudest of the lot of them but I’m just enjoying this major milestone with happy tears in my eyes.

I rushed to make his tea so I could bring him in to the safety and comfort of our home; I thanked the boys for looking after him and playing together so nicely.

Cameron enjoyed it so much and was talking about it all evening and how he wanted it to be sunny again tomorrow so he can play back outside.

With that statement that pang of anxiety returned to my stomach.

How do we let go….. Just a little?!!

I’m trying; I really am, it’s not just Cameron growing and learning on this journey – I am too.

Holidays: Delight or Despair?

As the holiday seasons approach so many people start to ask, “You all going anywhere nice? What are your plans?” For many, it’s the perfect time as a family to spend a week or two in a bubble of exuberance and enjoyment with the people you love away from the hustle and bustle of everyday life – away from home!

New clothes – check
Bags – check
Suntan lotion – check
Passports – check

This is the idyllic picture that we all hope for and dream that our holiday is like, how I envy those perfect family smiles and perfectly shot pictures in the brochures.

Unfortunately though, in the special needs world our planning for such events requires a little more military precision.

Our checklist looks more like this:

New clothes – they feel funny/ I want my old ones/ I don’t want short sleeves
Bags – all 20 of them with every comfort item we own
Suntan lotion – it’s not burning your skin, forget that (avoids meltdown)
Passports – not needed . . . we’re staying in the UK

I have friends with children who have wheelchairs or feeding apparatus that I can only imagine dread the preparation to get to those few precious days break.

My holiday searches are quiet, secluded locations (we are going on our 3rd log cabin break shortly) – they are lower key than a 3-8 hour flight to a foreign climate.

I search, “What’s nearby?” to plan in advance days out to see if it’s something he might likes the idea of.

I would love for it to be a surprise, but part of his condition is that he needs to know what the routine will be, right down to what food is served in particular establishments to know in advance what would fit in with his limited diet.

Last year we did a sun holiday break in the lovely seaside town of New Quay.

The weather was perfect and we picked out activities that were done at Cameron’s pace. We went with friends and it was a delightful experience.

I am very fortunate in that Cameron now enjoys our cabin breaks and this has become part of his routine; and we were able to tackle the flying side of holidaying with having family in Northern Ireland, so many little 40 minute short flights built up his tolerance.

The things we can’t plan are never far away though; those spanners waiting in the wings ready to throw themselves into the mix, the flight delays or traffic jams.

This is where we reach for technology in the form of tablets or phones and copious amounts of treats to ease the fraught situation.

We are now gearing up and working towards Florida in a couple of years, which I anticipate to be the true test.

So good luck to us all this year in our plans to get some quality time and rest with our families.

Let’s try to delight ourselves in the experience and not despair!

Searching For The Right CP Care, Education and Support in the Middle East

Therapy is useless, the therapists are just so tough and rough. When you ask them to make friends first of all so Dida will cooperate they tell you you’re spoiling her and they tell you with this attitude she’ll never walk.

When she vomits out of frustration they make faces and look disgusted so you try another centre and the result is the same.

We took her to the Bobath Centre in London where the therapists were amazing. She made friends with the therapists and responded to what they taught her and made really good progress.

Then we took her to the USA. Again it was a centre where they were specialists in dealing with children with all sorts of disabilities, behavioural, learning, physical, etc.

They made the therapy fun.

Again she did well. They would tell the child “let’s go and play” and they made it fun. They wouldn’t force them if they had a meltdown so the results were good.

However, all of these treatments have to be self-funded. Equipment is very expensive and we don’t have any government funding – there are lots of children who need specialist care.

There is a centre for Downs Syndrome which is amazing but it’s only for Downs Syndrome.

I really wish it wasn’t necessary to have to go overseas to get the treatment that so many children need and furthermore, not everybody can afford to do this.

Air fare is expensive, accommodation, actual treatment and equipment drain your finances but you just can’t just sit back and do nothing.

I know a lot of people complain about the National Health Service but people really have no idea how lucky they are to have this facility.

I was brought up in the UK, worked and paid tax and national insurance contributions and I moved to the Middle East when I got married. I returned to have my three children in the UK although I did choose to go private but I constantly return and am so grateful when there is an emergency that the NHS is available.

We will continue to support our daughter and her husband to pay for this necessary treatment for our granddaughter and just pray that she will eventually be able to walk even with assisted appliances.

As far as mainstream school is concerned that is another problem.

Currently, she’s is at preschool where she’s allowed to have a nanny with her because she has CP.

The school are very considerate as many establishments simply refused for anyone to accompany her, but we will overcome that obstacle if we can’t get her into one of two schools who take special needs kids.

It is very frustrating and just not possible to move back to their UK so we just have to make the best of what we have, she has just started therapy now with a wonderful therapist recommended by her paediatrician.

She’s only had a couple of sessions but the first thing she said is that they would have to spend the first couple of sessions getting to know each other, making friends and gaining trust.

So far, so good.

This is what we want, so let’s hope that we’ve finally found the right person.

Get Your Jacket! Start Thinking About Your Spring/Summer Wardrobe

Leather jackets will carry you through the chilly winter months, summer evenings and into the start of winter making it a real investment piece.

Another great thing with leather jackets is the vast array of styles and colours.

A simple blazer style jacket with leather sleeves will add an edge to any outfit, whilst a simple biker jacket is great for throwing on with jeans and trainers.

Find the right style for you, and you’re sure to have it for many seasons to come.

Another must have for every wardrobe is a trench coat.

It will keep you warm through the chilly months but it’s also versatile.

Wear it over a trouser suit or dress for work during the week, then with jeans and flats at the weekend.

When it’s extra chilly, these jackets can take an extra layer underneath and look really stylish with a big scarf.

The trench has really evolved through the years from the classic dark buttons and belt, to really feminine, floaty styles.

A trench in a gorgeous khaki colour is great for weekend wear and even looks good with your loyal slip on trainers. Again, a definite investment piece that will be in your wardrobe for a long time ahead.

A spring summer trend which has been prevalent in many high street stores is our 90s go-to; the bomber jacket.

It has come a long way since then and is now available in a more fitted form with gorgeous sleeve embellishments and silky materials.

Classic khaki and black are still around with the tell-tale orange lining.

Of course there are also some modern takes as the 2016 versions offer up a range of metallic, pastel and silky alternatives.

The bomber can be picked up relatively cheaply and is great for throwing on as you run out the door for the Saturday grocery shop.

Stylish, warm and easy to wear, it’s a piece that it open for interpretation by the wearer.

If the bomber isn’t up your street but you like the idea of having something that is easy to throw on and is also versatile; why not opt for a denim jacket?

Forget the age old rule of no denim on denim.

Whether you like old style vintage, distressed, cropped or brightly coloured, there’s plenty to choose from.

Such a versatile jacket, it can be worn over your summer dresses in the cooler evenings spent outside.

Pull it on easily with your stylish jog pants, t-shirt and trainers for a very cool and very comfortable weekend look.

Spring shopping is always welcome as it means we are closer to the sunshine months and we can finally shake off those thick winter coats and furry hoods.

Say goodbye to fur lining and quilted coats and hello to lighter, brighter alternatives.

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!’