My Child is Amazing Because…

Often the words, “Special Needs” are overshadowed with negative thoughts, fear or sadness.

These were all my own thoughts in the early days on our journey when my four-year-old blue-eyed boy was handed his diagnosis.

I came to understand though that my child is not disabled he is differently abled.

My child is amazing because –  he is wise beyond his years, he offers some real gems of advice from his 10-year-old brain yet his autism makes him appear to have little or no common sense at times.

My child is amazing because – he can literally tell you every vehicle on the road, just by having a quick glance at their logo.

Then launch into a tirade of comparisons between the top sports or electric vehicles currently on the market.

I often feel left out as the outnumbered girl in the house of car fanatics.

My child is amazing because – he will not be fooled if you try and switch his brand of chicken breast pieced from Morrisons to Sainsburys and knows when the chocolate spread is not Nutella.

My child is amazing because – After so long avoiding leaving the house and going to places for fear of meltdown or people glares – will now ask me the star rating of a mini-break, if the log cabin has a hot tub or if the villa has its own pool!

My child is amazing because – he tries, oh boy does he try.

He will conform, he will do EVERYTHING you ask of him, no matter how unsure.

He will try EVERYTHING once, yes this was not always the case but as he has grown older and in confidence, we do push his boundaries and he trusts us that it will be ok, that we would never make him do anything too uncomfortable.

He knows that when I say, “trust me, just try and if you’re not keen then you don’t have to do/try/experience that again” – that I mean this and he is safe!

My child is amazing because – he loves!

With no limits or judgement, he wholeheartedly, devotingly loves and wants me to know this.

He can tell me literally more than 20 times a day how much he loves me and when you consider were away from each other between the hours of 8-5 that’s a whole lotta love exchange crammed into the morning and evenings.

My child is amazing because -he taught me how to love and how to live, how to be non-judgemental.

Made me feel that I could help others by sharing the highs and lows of our ASD journey – a raw and unedited point of view.

My child is amazing because –  From the minute those two pink lines appeared on that pregnancy stick all those years ago now – I knew that he was boy and I knew that it was going to be special.

I never could have imagined the journey we would take; the assessments, the meetings, the observations, the milestones that came after everyone else’.

The support with speech, the support with motor skills, the support with – well just about every aspect of everything.

But all said and done – My child is amazing because – he is mine!

Autism Awareness Month

I noticed early on when my son was about two that he was different. I never shared this with anyone initially but would always compare him in toddler groups or against family’s children. He used to flap his hands, gag at certain textured food, bang his head or repetitively rock.

He was four years old when he was diagnosed and I was extremely fortunate that the correct support and intervention was put in place so early. My son is now at the national expected level in most his subjects, about to sit his SATs in May and although he is not the most academic child in his class he is by far the least.

I want to address some facts and myths and then tell you our own experience of these.

Here are some of the facts:

• Autism affects more than 1 in 100 people, of these. There are more autistic people in the UK than people with caravans – and we all know how many of those we see day to day.

• Autism cannot be cured but with the correct support, people can thrive.

• Four times as many boys as girls are diagnosed with Autism.

• 70% of Autistic children are educated in a mainstream school with support, although 60% of teachers in England do not feel they have adequate training to teach these children.

• Primary school children with special educational needs are twice as likely as other children to experience persistent bullying.

• 85% of people with Autism do not work full time.

Here are some of the myths:

• People with Autism do not have empathy.

• People with Autism are anti-social.

• Autism is a mental illness.

• Autism is caused by the MMR vaccine.

All of the above will not be a surprise to most people – ok maybe the caravan one!! I know people with caravans but I know a lot more people with Autism so that seems to check out.

Here are my facts:

• I have a son with Autism, my sister has two – we both have a brother with Autism also.

• My sons best friend is a girl and has a form of Autism – this confirms the boy to girl ratio.

• The support given to my son after his diagnosis helped him thrive in school.

• All the people mentioned above were/are in mainstream school.

• My son has been bullied.

• My autistic brother struggles in a work environment and is unemployed

My experience of the myths:

• My son is the most empathetic person I know – he loves and he hurts for people, he feels injustice.

• My son is the life of a party, loves to have a dance and will approach anyone to try and make friends with.

• Autism is not a mental illness although factually teens with autism do have a higher chance of suffering with their mental health.

• Autism was not caused by any vaccine – it is neurological, it’s a more likely argument to blame genetics.

Ultimately though what does it matter – you have this person in your life who you love.

Yes, the diagnosis is unexpected and not welcomed but you have to just improvise, adapt and overcome.

I am open and honest with my son and I use the internet and knowledge to my advantage, I know as a visual learner using the “Amazing Things Happen” video by Alexander Amelines to introduce him to autism was better than confusing him with words.

He asked me the next day could he show the video to children in his class to help THEM understand him.

Please talk to your children about autism; tell them that there may be children in their class that are a little different, it needs to become the norm. If it is learned behaviour to accept then there will be less judgment and more understanding.

Use this year’s awareness dates to start those conversations – they will be hearing about it in school I guarantee.

Thank You… for Making a Difference!

I appreciate everyone around me who supports me and makes a positive difference in my Special Needs world and who allow me to be a full time working parent.

I don’t say it often enough or show just how much I appreciate you all but I really, REALLY do!

Thank you – Jay, my wonderful husband, and best friend.

Thank you for my son, my blue-eyed wonder who clearly gets his intelligence and stubbornness from you.

Thank you for holding me up when I am weak and appreciating ME as a wife and mother.  You are both my world and I love you both dearly.

Thank You – Grandma, at almost 70 you are so full of light, love, and laughter.  You are the head of the family.

Thank you for looking after Cameron after work, for food preparation, for the washing and cleaning you do to ease the load.  Thank you for feeding the fish, even if it is too much.

Thank You – Mum, the woman that “gets it!” the most – who has raised her own special needs child and who is a pillar of strength.

Who will offer to attend every hospital appointment and who carries the weight of not only worrying as a mother but worrying as a nana also.

Thank You – Chrissy & Ruby, my beautiful sisters.  Thank you for all the school runs and collections.  For loving my own as if he were your own.

For all the MacDonald’s and treats – for all the days out when Cameron is included without any hesitation.

You both have your own lives and your own struggles but your support eases my own.

Thank You – my best friends….. Michelle, Holly, Vicky, Leanne, Boris, Jay.  You are the people that know us as a family is our rawest form.

Who witness our parenting triumphs and disasters!

Who are on WhatsApp at all hours for anything I need – who know the perfect reply GIF or Meme.

The people who we get to look forward to spending time with knowing that all your children are the most grounded and loving little humans who embrace and accept Cameron for his quirkiness and sometimes overly frank honesty when I imagine others would say “don’t play with that kid – he’s rude”!

Thank You – School Club (BOSC). You have had such an active role in raising Cameron with us since preschool.

You helped me understand his needs in the days before he could effectively communicate.

You taught him about sharing and interacting with other children and likewise making the other children accept him for the way he is and to be patient with him.

As he now approaches secondary school and towers above the little ones that he once was – it is bittersweet for me that yes, he has grown in ways I could only bream off and realistically he will probably not be with you for much longer.

Thank You – St Paul’s Primary.  From the very first day I handed over my small 3-year-old for a preschool session when he could hardly talk.

To now preparing him for his SATs and actually being quite optimistic that he has a chance.

Thank you for listening to my concerns and addressing the issues and doing the BEST to support my child through his primary years.

And last but by no means least… Thank You – Cameron.

Thank you for your love, your bravery, your resilience, your efforts so far in your 10 years of life.  Thank you for making me smile every single day.

I hope that one day when you are old enough to want to read all these blogs you look back on these years and all the people mentioned above with fondness.

Gratitudes for 2018

I have THE best family and THE best friends. Ever. FACT!  2018 has been a truly amazing year, we manged to get in so many memories and firsts.

I’m grateful that this year we had our first abroad sun holiday.

We do go on holiday every year but we mainly travel around the UK or go to visit family in Northern Ireland. So, we had a two-week holiday to Corfu with some of our best friends.

Cameron was worried about the longer flight than he was used to and I was worried about the change in diet and the mosquito bites that he would have to deal with.

We hired a boat and went out on the open sea, he went to his first water park but he absolutely blew us away with his maturity and the way he literally took each new experience in his stride.

He said when we came home that “he had the best time ever!” and loves it when we are off work and all together.

I’m grateful that our jobs allow us the lifestyle we have and the ability to have been able to book a similar trip abroad again for next year.

I’m grateful for the first grown-ups weekend away to Prague that me and my husband were able to take with friends.

The first time in 10 years I have left Cameron with family for three nights.  He was in the best hands, spoilt rotten and although he wasn’t too impressed, he coped absolutely fine in his routine change.

I’m grateful to my parents for all that they do for all their grandchildren.

In the summer holidays Cameron then went away with his grandparents, aunts, uncles and cousins on a camping holiday down to Cornwall.

He went swimming, built new relationships, played out until it started to go dark and spent everyone’s money in the arcades winning his dad a fluffy dice for his car!

I’m grateful to my own grandmother who at her 67 years of age still looks after the whole family, by cooking or just giving her blessings and emotional support.

She looks after Cameron three afternoons a week until we finish work and ALWAYS has his tea ready for him when he gets in from school.

I’m grateful that my sister treats my son as her own.

Every day she takes him to school and picks him up three of these days when he is not at afterschool club.

She will always call me to see if he wants to join in any activity that they have ongoing whether it be park, cinema or MacDonald’s.

I’m grateful for the true friendships that we have.  This year we all went camping for the first time, our friends had spare equipment and we were told to “try it” and see what we though.

The hilarity that followed made it truly one of the funniest experiences ever.

Cameron again excelled in his coping and maturity, he didn’t thoroughly enjoy the new experience but said he was willing to try it again.

I am grateful that my siblings have been blessed with extending their families, my brother is about to become a father for the first time to a little girl and my sister is expecting TWINS.

The above were all the highlight stand out moments from this year but there are so many more, and we still have another whole month left.

I am grateful to Firefly in giving me this platform to be able to share our ASD journey with the world, in hope that our experiences help or give hope to at least one other person.

I am grateful for the love of my husband who is my best friend and life partner, father to our beautiful son and whom without I don’t know how grounded I would remain.

Here’s to 2019!!

Time to Reflect

When I saw this title as a blog suggestion header, I was a little taken aback as it made me think for a quick second – made me reflect when it’s not something that I often do.

I’m scared to reflect in many ways about the SEN journey we have endured, it feels like we have been on it for so long – yet it’s never ending.

I will never forget what my mum once told me early on:

“it doesn’t really get easier Zo, the worries and problems you face just change to different ones”

And this is exactly right; as you conquer one challenge, it’s not that you have now finished or even that you have time to reflect before moving onto the next – they just morph into each other, into what feels like just a constant barrage of emotion and strife.

I like to think that I am quite an optimistic person and not one to dwell as that takes too much of my energy, energy that I need for the tough days.

Saying this though I am a worrier about getting things right and the need to be in control.

I have been a nightmare whilst making the secondary school selection this year.

I suppose another reason I’m not all keen to reflect, I don’t want to focus on the “what ifs” and the “I wonders” because all said and done I can’t change anything and I know that every decision that I have so far made has been to the best of my ability and knowledge for what I considered to be the best for my child.

Reflection for me automatically takes my mind to focus on the bad – the what went wrong.

Ask me this same question in a work environment and I will pick out every highlight and time to shine to give you the best end of year review possible!!

So why not for my life, which is full of so much good?

I’m going to try…….

In fact; if I reflect on Cameron’s primary school journey as a whole, now that he is in year 6 – yes there were some issues and low points but there have been some absolute diamond moments too:

His first residential trip

His head teachers award

His first best friend

Him passing his phonetics test when it was not expected he would

Receiving postcards of praise from school about his learning and attitude

Every teacher, in every year saying he is an absolute joy and so loving

Him learning about his autism and then wanting to share an informative video with his class

Helping the younger children in school as “buddy’s”

Him volunteering to help on the xmas sale stall after school as its “nice to help others”

I am grateful for all the above, all the nice comments from his peers and from people that know us.

Yes, there are obstacles that we must manoeuvre and there will always be challenges but I have a beautiful, healthy, kind, funny and knowledgeable child who is healthy and happy.

A child who loves his parents, his family, his friends – loves technology, loves going to the gym and can’t wait for “all the fun things that we do”!!

So actually, on reflection – I’m the luckiest woman in the world, I have a well-rounded child with manners and so much love to give to those that will deserve to receive it from him!!

What to Get – SEN Christmas

My son is ten and it took me nine of those years to get the Christmas present purchasing just right.

Yes, NINE whole years, well I suppose the first few up until he was diagnosed at four were easy enough.

At that time, I was just purchasing the latest Cbeebies cartoon toy of the moment or any type of vehicle.

If it had wheels of any kind then it was a winner – preferably wheels that he could then proceed to chew off in the coming weeks and I would have to follow him, prizing them from his mouth.

I am just thankful he was never one of those children that chose to stuff these up his nose or in his ears – although the fear of him choking was real.

So, fast-forward to the years six, seven and eight.

These were the years that his speech was much more formed, his vocabulary was amazing and his writing was coming on.

This is where the lists started.

How hard can it be – to follow a list! that’s what he might as well have said to me for the next couple of years.

Christmas at six Cameron had most things on his list except for a bike.  He was growing so much at this stage and my logic was that I would wait until his birthday in May as he would not get much use of it during the winter months.

A wonderful day was had by all and when I asked Cameron how was his day – he said, “it was ok but I didn’t get everything on my list – I didn’t get a bike”.

I was crushed – no one wants their child to remember not getting something they really wanted.

Christmas at seven was where I got everything on the list – we all know how rewarding this is as parents.

We would have no repeat of the previous year.

Yes, I even managed to get retro micro machines discontinued in 1993!! in addition though I bought him extras, you know bits that I thought he would like.

Since that Christmas, if I have ever only given one piece of advice to my fellow SEN parents that I hope they take on board – STICK TO THE LIST; No more, no less.

This was the year that he opened gifts and announced, “I didn’t ask for that” and this wasn’t just reserved for me and dad, this gem of information was also extended to family’s gifts.

I was mortified, I literally cringed, I was so angry at how could he be so ungrateful, but why though – in his logical mind he hadn’t, he was being truthful.

Its only society that tells us that you can’t say those things as it is rude.

Fast-forward another 12 months to Christmas age eight!!

Only list items were purchased; when family asked what to get him, they were also given a list item or asked to pop some money in a card as this is also something that he was starting to quite enjoy receiving.

As with previous years I asked, “how was your day today baby?”…… BEST CHRISTMAS EVER, I got everything I wanted.

It worked an absolute treat, genius and so much more stress free.

At nine I felt he was old enough and had come on so much in these last 12 months.

He knew about his autism now and was fully embracing this.

I made a suggestion to him: “How about you don’t make a list this year, I think between me and Santa we can figure out the things you like – lets have surprises this Christmas” and you know what, at first, he wasn’t sure.

He told me he would get back to me and that was fine, as he needed time to digest this massive change.

He eventually agreed!

“How was your day baby”………..”mum it was the best day, I’m actually quite surprised at all the amazing presents I got”.  SUCCESS!

So, yet another 12 months have passed and as we were on approach to xmas 2018 he said………….

“Mum can I just have surprises again this year like last year”

Learning to Let Go

“Now Cameron, you walk straight there, don’t talk to anyone and I’ll see you later – I love you”

I still remember the sick feeling in the pit of my stomach when I watched my son walk off down the street on his own for the first time.  He was walking to my sister’s house which was literally a less than two-minute walk around the corner.

Message sent 7:57am: “he’s on his way – tell me when he’s there”

Message received 7:59am: “he’s here”

There we go – I managed to let go and he felt suddenly so much more responsible and grown up that he walked to aunty Tina’s house thereafter every morning before school.

Then came the question later that school year:

“Mum when I’m in year six – can I walk to school on my own or with my friends!”

“ABSOLUTELY not!”

This was not even something that was up for discussion, initially I was not even offering up an explanation to my son as to why.

No meant no. I was afraid, afraid of so many things and scenarios in my mind.

Yes, he has autism but he is in mainstream school, full understanding of expectations but he is also extremely naïve.  He does not understand why people would lie as that is not something that sits well with a logical mind.  When I was explaining online safety in gaming he said, “why would someone tell you they were someone else or a wrong age!”.

Or the time we bought a new car that he was excited to tell his friends about and another child said “well my dad just bought a Lamborghini “ and when I assured him that this child’s father had not bought a Lamborghini he was confused “but why would he lie”.

So now we are into year 6, his final year of primary school, I now have the makings of a fine young man in front of me.  A young man that is again asking if he can make his own way to and from school.

So, Google maps shows it’s a 10-minute walk.  There are no main roads, and literally one small cul-de-sac side road that must be manoeuvred to school’s destination.  A walk we have done 1000 times before and a route where we know so many faces – so why the dread.

I saw a post from one of the school mums online this week stating that her son would shortly be getting the bus home outside school twice a week.  This family live just around the corner from us and I made contact to see what the plans were.

So, our bus stop is 2 stops from school –  a five minute journey instead of a 10 minute one.  We shared our concerns with the fact the boys will be going to high school next year and are not streetwise and need to be helped in growing up – we took reassurance in that there are people on the bus daily that we know and I will have a family member strategically placed in operation “secret squirrel” for a few weeks to see how the journeys go.

So that’s it.  My boy is going to soon be taking his first “independent” steps in his ambition to be making his own way home from school.  We are starting small with two days and just the return journeys, we may later on in the year introduce a day where they will walk home.

I’m really trying to learn to let go.

Being A Parent of A Child With SEN

My son came downstairs recently; stood right in front of the TV, totally oblivious to the movie we were watching and started……….

“Dad, do you know that the Tiger Tank was over engineered, the materials used were much too expensive.  The tracks on the tank often failed mechanically and the fuel consumption was totally rubbish – can you believe that?”

Cameron has always been interested in mechanics; whether it be planes trains, vehicles really of any size.  He has knowledge – really intricate knowledge beyond his years on the workings of pistons or points on a railway – his brain fascinates us.  Yet he can’t remember to change his underwear or does he know how to tie his laces.

I looked at my husband when he walked back off upstairs and we both laughed.  I said to my husband “Would you change the autism now?” and he shook his head, “no me neither!!” – and I actually meant it this time.

You see it wasn’t always so.

I used to think people were liars when they would say “I wouldn’t change them for the world”.  My heart would race, I would get annoyed and I would think why were these people just not being honest, I thought “WHAT?! yes, yes you would – If you had the chance you would want your child to be typical and not face the uncertain future that they have with their disability!!”

This was before I accepted the uniqueness of my son, before I actually started to watch and observe the way he saw the world and fully appreciate him:

  • The way he clicks his tongue in time with the indicator on the car.
  • How he knows every car manufacturer logo
  • The way his vocabulary and context could easily be that of a college student (event if he couldn’t spell any of the words)
  • His love for watching “top kitchen gadgets” and thereafter his recommendations for what would make my cooking life more easy
  • How we will run his hand over my knee and stop to take in the scar I obtained as a child and be full of concern when he heard of how it happened
  • The way he has literally no filter – will say what he thinks 100% of the time
  • How he will tell me literally 50 times a day “I really love you mum”

It took a good while, with many tears and so much heartache to get to this point.

I realise now though that without his autism he would not be the person he is today, a person that gives me so much joy, love and laughter.

Back To School

“Are you excited to go back to school, baby? Big boy now – year 6, this year!”

“Not really, mum.”

Cameron has not found primary school easy if I’m totally honest, I can only imagine what it’s like for him as he’s not one to moan or meltdown to express his emotions.

When I try to talk to him about it he has said, “I can’t think of the words that I need to explain how it makes me feel, mum”!

When I think back, it was year four where things last seemed simple.

He was at this point communicating, well, his speech had come on amazingly and he was now reading exceptionally well.

He had friends and was, “emerging”, as the school reports said.

This was fantastic, he was by no means the best in his class but he wasn’t at the bottom either.

Last year; year 5, was a really rocky road for us as a family.

It was early on in the school year that we were advised to tell Cameron about his autism as he was starting to realise he was different and other children were and I quote, “starting to become less tolerant of him”.

Please don’t think he’s aggressive or difficult – he just is quite vocal; his ticks tend to be car noises or train horns.

He is getting much better at this but understandably he was doing this when he shouldn’t have been and was causing disruption within the classroom.

It was during this year that we were prewarned, emotional maturity steps up a gear with most typical children and there was still going to be a delay within Cameron which meant that him being, “different”, was once more going to become more prevalent.

Now I pride myself in being a supportive mother both to school and my child, I would say, “just ring me whenever there is ANY problem” – and they did!!

It got to the point where my heart would sink when I saw, “Cam’s School”, pop up on the call ID.

The worst thing though – it was mostly really petty things and it was so frustrating that he just couldn’t stop himself.

Time after time I would get in from work and chastise him within 5 mins of being there, setting a dull tone for the evening ahead.

So, this year – his final year – we have the anticipation of finding out our high school choice and if we will have to appeal.

The SATs tests that will set out his start of high school.

Trying to get him to be less naïve and think if there is any possibility that I could actually get him catching a bus or walking a short distance home with some friends…

In all honesty, if someone was to actually ask me:

“Are you excited for him to go back to school, Zowie? Year 6, this year!”

“No, not really.”