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.

Raising Kids With Special Needs: Do You Even Know…?

Cameron is now seven and he doesn’t stop talking; no really, I mean he doesn’t stop.

We have even heard him talking in his sleep.

What makes me smile though is the way he starts every sentence…

Do you even know mum – Why a car needs suspension…it’s for protection! Because if it didn’t and you went over a bump there would be soooo much damage!

Do you even know mum – How many pistons a Lamborghini car has…10, they move up and down like this and this is the noise it makes!

Do you even know mum – That the flying Scotsman is doing a test run and it’s the fastest train EVER!

Do you even know mum – The fastest person ever is Usain Bolt, he eats a balanced diet – but I don’t like broccoli!

Do you even know mum – That car logo is an Audi; that one is a Renault, that one a BMW, ouuu there’s a Ferrari!

Do you even know mum – That I like wearing my earmuffs because everything is always so loud!

Do you even know mum – What a carburetor does…inside the combustion engine it regulates the air and fuel going into the vehicles engine!

Do you even know mum – You go to work and get money, my dad goes to work and gets money but I go to school and do work but don’t even get any money!

Do you even know mum – These chips you have made me are burnt – you are the worst cooker of chips ever!

Do you even know mum – What a mod is? It’s when you modify things, like you could modify this T-Shirt and put a hood on it.

Do you even know mum – When I grow up I want to be a truck mechanic like my uncle and fix MAN trucks even though SCANIA trucks are my favourite!!

Do you even know mum – I need the toilet!

Do you even know mum – This is how a dude stands with his man bag!

Do you even know mum – If you are late for work then Heather will sack you!

Do you even know mum – The points on the railway allow the trains to be switched from one track to the other – but you have to be careful if they lock it can cause accidents!

Do you even know mum – That my dad is the best-est builder ever using building materials like wood and metal and other things – he can fix your broken nail! …

So it turns out that I don’t even worry anymore (well maybe a little) about what avenue his learning will take us down.

I appear to already have the foundations of a mechanic or engineer of some sort.

I suppose what I’m trying to say to the people early on in their journey is…Don’t fret (believe me I know this is hard, I truly do), it will come in time.

Maybe not how you envisaged it would or dreamed it would be – but in some form each child will go through their own metamorphosis in learning and understanding.

Their speech and ability will transition in its own unique way, not at a rate that typical children will but I promise you that our celebrations of this will be phenomenal.

So in keeping with Cameron’s format…

Do you even know Cameron – I don’t always know the answers to the questions you ask; you have knowledge beyond your years.

I will always try to encourage your individuality and will push your boundaries sometimes, but only because I know you can handle it.

Do you even know Cameron – although I try to tell people not to worry about their own children, this is a bit hypocritical as even though I know deep down we will be OK, I never stop worrying.

Do you even know Cameron – how annoying “Peanut Butter Jelly Time” is but it’s the only song you will sing so go for it!

Do you even know Cameron – for someone who is labelled as “socially awkward”, “unaware of what’s going on around you”, “prefers to be alone”…When there’s a party, you are the life and soul.

Do you even know Cameron that every single day I am thankful that I have you and that I love you more that life itself.

Autism: Diagnosis Day

My husband chose a pre prepared sandwich, very average and I ordered a latte.

My 4 year old son Cameron never ate out anywhere – he barely ate at home.

I was meticulously prepared with, “red crisps”, and, “green juice”; maybe today he will try the yogurt that we have been working on for the past ten days, maybe without a meltdown.

Our return time fast approached and we made our way back to that colourful waiting room, I always think how much more of an effort they make in the children’s departments compared to everywhere else in the hospital.

The wonderful smiley Doctor came and called us through whilst instructing a nurse to take my son to play next door, “Don’t worry,” he reassured, “He will be fine they have trains”.

I remembered the salmon coloured curtains and the teal plastic covered chairs as we were invited to join the group of professionals.

Their chairs set out in a semi circle, but still had a board meeting feel about them.

Mr & Mrs Kaye, thank you for taking the time today for us to complete the ADOS assessment. We can confirm that Cameron score places him on the autistic spectrum.

I don’t recall much of what was said following that, something about follow up appointments, indications that help will be put in place…SUPPORT…any questions?

  • You see at that moment the following happened; I entered the initial stages on the grief cycle –
  • LOSS
  • SHOCK
  • DENIAL

Even though as a pragmatist, this diagnosis was exactly what I needed to go forward, to learn, to grow; to get to the final grief cycle stage…acceptance.

12 months on from D Day…

He’s had a wee in the toilet, he just went by himself!!

I was calling EVERYONE to share this news, sending pictures; I mean really who sends pictures of poo to their friends/relatives – any autism parent!!

I could have burst with pride at the fact that, at age 5, he is now toilet trained!!

Yes it took us much longer than a typical child but you see this is not just a transition from nappy to toilet.

For us, as a family, this is no longer a worry that I have to frantically get in touch with someone to make their way to school, to change his soiled nappy because I’m stuck in a meeting in work. I was so pleased cancelling the incontinence team referral.

That he can now go to the toilet as other children in his class do.

One less thing that makes him stand out for the wrong reasons.

24 months on from D Day…

Cameron is a bright child with an ability to adapt; loving, kind, well mannered and comical but does struggle in social situations and can be stubborn!

This was the most prominent sentence of Cameron’s school report.

He gets his stubbornness from his Dad.”

I piped up whilst looking at my husband, we all laughed.

Yes!!!

My autistic child is coping in mainstream school, they are fully able and managing his needs exceptionally well.

The statement/EHC document is in now in place along with his 20 hours one-to-one support!

Present day…

Cameron is much more able to work independently, but still has a long way to go.

He is polite, loving and likeable.

This was stated in the most recent school report at the end of year 2:

“He excels in technology and the sciences. Last year he was below the national average and his effort minimal.”

Now he is working at the expected national average and his effort is exceptional!

My baby is trying.

So you see although I started this blog post with the intricate details of the diagnosis day; which are there because of the pain that is still etched in my mind and heart, we made it past those final grief stages though – optimism, acceptance…… hope!

We will never forget but we will learn to cope and will never stop looking forward and beyond.

Raising kids With Special Needs: Helicopter Parent Equals Autism Parent

I think the above blurb taken from Google is an insult quite frankly; I take a defensive stance to this.

Some other descriptions from across the net:

• Highly-strung, control freak parents

• Restrictive, patronising, nannyish

• Obsessively protective mums and dads

Here is my definition of a helicopter parent, which one do you gravitate more towards?

Noun, informal “A parent who is vigilant and or is conscientious and or protective of their child or children” You see I don’t want to be this way, I’m not neurotic, I’m working on it and I apologise if I appear to be mollycoddling my son but there are reasons for this.

I am a helicopter parent because…

• At any given moment even though he’s sat enjoying those crisps you gave him; if a south easterly wind was to pass and blow his perfectly placed tuff of hair in a way that feels out of the ordinary he will lose it.

• Although you think he’s being greatly affectionate and interested in your newborn; my throat is in my mouth and in the split second that he loses interest and feels like dropping your bundle of joy – like NOW onto the floor, you will be glad I’m there.

• What a great wedding. It’s lovely that your daughter is playing nicely with the other girls on the dance floor; but I am watching their body language trying not to engage him in “Ring a Roses” that my son is clearly not picking up on and I just read his lips say “I’m going to tell my mum”.

I am a parent who is there to protect, reassure, and prevent harm (physical or emotional).

I do this as millions of women before me and millions after me will do for their own. I don’t do it to turn my child into a spoilt brat as some may see.

I do it to guide his competence and confidence. Every opportunity where I will intervene like the examples listed above, I turn into a learning experience for my son who struggles to understand situations in the way typical children do.

I understand that help is not always helpful but there is a time, place, and environment to let them try these things out on their own or to push their boundaries.

It’s more often than not within familiar surroundings like at home or school, where the fallout can be contained.

• I will encourage him to try new foods/textures even though they may make him gag.

• I will encourage him to try and resolve his issue with his friends at school by himself.

• I will tell him that he can’t always have his own way and to wait his turn. • I will discipline him accordingly when he has misbehaved.

So you may see me a bit on edge in new and social situations. I’m not ignoring you, I would love to enjoy the Latte going cold on the table and above all I truly envy that you can leave your child to their own devices but…

My child is autistic, I am a helicopter parent because…I love!

Raising Kids with Special Needs: Multiplex Families – It’s in the Genes

I’m going back briefly to put myself into my mother’s shoes; you see, I’m a second generation autism mum and a very new family addition to this world is my sister Christina and my nephew Alex.

Autism, unless severe, was not diagnosed back then.

I have a brother; Brian whom is an undiagnosed autistic person and now 30 years old, I don’t need to be a medical professional to know this.

I know this because my son Cameron and Alex who are both diagnosed share every trait of his.

Back to the 80’s…

Mum received yet another call from school to say Brian is acting up; “Brian is not concentrating,” “Brian has wondering off – AGAIN!”and, “Brian is now suspended!!!”

She would ask him a thousand times why he had done something; he never knew and would do it again as soon as her back was turned.

The tears she cried.

A Doctor once told mum that there were thousands of children like Brian who fall through the net and are let down by the powers that be.

By the time there were mentions of autism and complex diagnosis, Brian was in high school.

It was too late for him; he left school with no grades having had no support.

The reputation he had obtained throughout his school life was of being naughty, instead of an ASD label he so deserved.

He now has a family and found his own way but things could have been much easier for him.

Genetics… At present, no specific genes linked to ASD have been identified and there are currently no tests that can screen for, ‘ASD genes’.

However, the specialist seeing your child may screen them for genetic conditions that have similar features to ASD, depending on any additional symptoms your child has or are present within your family history.

There are some families where only one member has a diagnosis of ASD, and no one in the extended family has a diagnosis.

Such, ‘one-off’, incidences of autism are referred to as, ‘simplex’, autism.

On the other hand, there is a multitude of families (like my own), where more than one member of the extended family has a diagnosis, or several members have very high levels of autistic traits – even though they might have never received a formal clinical diagnosis.

Such families are referred to as ‘multiplex’ families.

Experts estimate that between 400-1000 individual genes may play a role in the complex neurological issues involving autism.

I have read that if you have one child with autism then the risk of your next child having this also is only 2-6%, if autism was down to a single gene then this figure would be more 25 or 50%.

Present day; back in my shoes, a multiplex family.

So in the 80’s there was no diagnosis for Brian…2012 a thorough but lengthy diagnosis for Cameron…. and 2015 a quick diagnosis for my nephew Alex where we noticed on multiple occasions within the reports, “maternal cousin confirmed ASD & uncle ASD traits!”

It’s easier in some ways for us; it goes much more beyond statements of, “Ohhh he’s just like his uncle/cousin,” or, “He does that just like his uncle/cousin.”

For us the similarities are comforting, it’s reassuring if we have seen the trait before because we then can gauge if it’s a phase and if it was outgrown.

It’s the unique traits that are new or unknown that make us more nervous or take to the Internet for reassurance.

Christina and Alex were my inspiration to want to blog about autism.

I struggled during the early diagnosis days when battling to explain how Cameron was similar to my brother with autistic traits, who didn’t have a diagnosis.

I wanted to share my experiences for my sister as well as others to have a reference, to be able to relate.

For Christina the professionals were keener to listen to her as soon as she mentioned her nephew was autistic. For her I think it helps that I am a few steps ahead in my journey, for reference.

So as they say “It’s all in the genes”; be proud of your genes but use the information you have and what you know about your loved ones to your advantage when seeking a diagnosis or additional support.

Autism Milestones

I had to accept that my son Cameron would never just, ‘get it’, never just, ‘simply understand’, every milestone that typical children accomplish would be delayed or absent all together.

Will he be able to?

This was a question I was asked a lot in the early days; whether it be followed by…attend school?…cope in mainstream school?…grow out of it?

(I even took to the Internet in the early days to ask this myself) and always, my answer, ‘…I don’t know!’. 

At this point you see the confusion on people’s faces; you immediately go on the defensive, it’s not like I have not asked these questions of the professionals; please don’t think that I have not spent hours researching for the answers online.

No one knows… no one. 

You see the autism spectrum is so vast and so unique in each person that unless the NHS are suddenly able to equip Doctors with a crystal ball, then no we don’t know and we will just have to wait and see.

May I just add this is a pragmatist’s nightmare!

I never forget one day when I started to think about his milestones and achievements; someone asked me:

‘What can he do?’ ‘What are his strengths?’

I was taken back and stuttered for a few seconds; this was a stranger in a supermarket that I had for the 1000 time made my excuses to –

Sorry, my son has autism and he’s quite inquisitive!’ 

I realised in that moment and that lady’s warm smile that for months now I had been focussing on Cameron’s inabilities.

And after what seemed like a lifetime, I started:

‘…he can tell you the workings of a steam engine.’

‘…he can tell you every make of car/truck by their logo.’ (also with engine sound effects)

’ …he’s the top of his class in maths.

Flash forward to today:

Cameron can be socially awkward but at every opportunity I use situations to bring this to his attention, as a learning exercise.

His vocal ticks are more controlled.

He copes 99% of the time in class, this was the latest milestone from parents evening and he’s enjoying learning about, “the fastest person ever!” – Usain Bolt.

On this learning journey in school he is also being taught about a balanced diet, yes he still had a limited diet to mostly beige foods but then something happened a few Sundays ago.

I was cooking a beef Sunday dinner, Cameron’s nuggets and chips ready to go into the oven on the tray when he comes bounding down the stairs:

What is that de-licious smell, mum?’

Now was not the time to educate that delicious is a taste not a smell but I have learnt to choose my battles.

That’s beef, baby.

Uurrgghhh, I hate beef.’

I saw an opportunity and grabbed it with both hands;

How about you try this delicious smelling beef, and you can have some lemonade.’

PAUSE

‘OK!’

The look on his face will stay with me forever followed by the gasp and realisation that he actually, really liked it.

Mum, can I have loads of it? Beef is a meat and is part of a balanced diet.’

Thank you school, Thank you Usain Bolt!!!

This was some weeks ago now and we have had beef much more frequently since.

On a recent shopping trip we went into a butchers and he saw a hot deli with beef:

Mum, can I have a beef butty, please?’

Autism Milestones…Not your typical milestones, but milestones none the less.