The Time was Right: Telling my Son about Autism

I planned to do this before High School so that he was aware for his own wellbeing on the next leg of his journey.

I thought that all the stars would align and we would have a deep conversation about what it means for him and everything would be all happy and smiley.

The reality was very different though and one term into his year 5 school year I was being faced with concerns from his teachers that he was now starting to stand out from the pack.

The children who he had grown up with since preschool were now becoming less tolerant of him and his quirky ways.

They felt it was time to be having this conversation.

I had planned to take the Christmas holidays to have this difficult conversation, in the warmth and comfort of our family home surrounded by happiness and love.

Yes, this would still be OK and I could make this work.  I had written out what I planned to say and prepared the examples I would present to him.

After all this is not a quick conversation we could have mid weed in the hustle and bustle of after work, teatime rush!!

In fact, this was my reality – this is in fact when the time was right!

I had finished work and picked up some shopping on my way home, then a call from school.

This was unusual at 17:15, his teacher proceeded to tell me that Cameron had a difficult day in school, that he was being disruptive and not engaging in class work.

I apologised profusely as any parent would and my heart was heavy knowing I now had to go home and greet my child with yet another behaviour lecture.

I questioned him as to why he was doing these things and told him his teacher was frustrated and I was disappointed.

He started to cry and said, “Mum, you just don’t understand how difficult school is for me and just how hard it is – people are mean to me ALL of the time and I don’t understand why I do the things I do.  I don’t mean to be naughty”.

This was it – this was my chance and in my heart, I knew I needed to give him the truth.

Knowledge is power.

I got the iPad and sat him down, “Cameron I want to show you a little video and after you have watched it, I want you to tell me if this is someone you recognise OK”.

There is a video online, “Amazing Things Happen”, and it’s a cartoon video with a David Attenborough type voiceover explaining all about differences in people with and without Autism.

There is a point where the narrator explains about stimming and my son spoke, “That’s me, mum.”

I asked him if he feels this is describing him and he say yes.

With that I had done it, I went on to explain this is the reason that he has extra support in school, why he doesn’t like certain textures and changes in his routine but most importantly why it isn’t anger that he is feeling as he keep telling his teacher but it’s an overload of information that his brain is so desperately trying to fathom out.

Cameron went into school the day after and announced, “I am Autism”, I had pre-warned his teachers and they corrected him that he has it rather than is it.

He then asked if he could show the video to his class for them to understand him more.

So, you see, we can worry ourselves sick and try to plan everything in advance but sometimes a spur of the moment event has that same profound outcome.

I wouldn’t have changed this moment for all the world.

Special Needs Family Resolutions

I guess if push comes to shove, my resolutions have always been to make the most out of the year and to try and smile more times than I cry.

I have never had any real resolutions, like lose weight, spend less money, go on holiday or complete a bucket list.

I asked my children what they want to do in the New Year and explained that this is a resolution.

They all stood and thought for a while before responding;

8 year old: to be able to draw like Daddy.

5 year old: to know more dinosaur roars.

4 year old: to laugh.

I love how innocent, how simple their resolutions are. They are not wanting to gain anything (or lose weight).

The resolutions aren’t really to do anything particularly outlandish and they are all rather achievable.

It was very humbling to see the aim of the year to come from a child’s perspective.

I then asked them what they think their baby sister’s resolution would be if she understood what we were saying.

To say her first word.

To walk.

To eat food not from pouches.

Their resolutions for their sister rolled off their tongues so fast.

Although we have never said your sister is different to other babies, they know.

They are just so encouraged by her determination and they are so proud of their sister to hear these resolutions come out really caught me off guard.

They are so desperate to see their sister progress and do things that they do.

Every day they try and get her to do different things, and when she shows just a slight progression they are her biggest cheerleaders.

I asked them what my resolutions should be and they only had the one;

Not worry about baby so much.

So this year, after a year of worrying, after a life time of no resolutions. I have decided to have one resolution.

To not sweat over the things I can’t change

I can’t change my son’s autism, I can only adapt and change my own life to make his life more comfortable.

I can’t change my daughter’s disability, I just need to let her take life at her own pace and do it in her own way.

How many people fail at their resolutions by February?

I am hoping I will beat the statistics and stick to my resolution until next year comes around.

Three New Year’s Resolutions that would help my family

Except this one is a little different.

I won’t bore you with my New Year’s resolutions but I do hope that any YOU have include the following to help children and adults with disabilities and additional support needs like my children.

These are three resolutions I hope people will consider not just for the first week or so in January but for the entire 2018 and beyond.

1. Would you resolve to be more tolerant of those who are different to you?

Maybe then I would get less stares and tuts from people when I take my son out.

Maybe then when my daughter gets very repetitive people would not mock her but would be more patient to allow her the time she needs to communicate.

When the person in the queue takes longer to work out the money needed to pay or needs a bit more time to process the choices on offers would you maybe be a bit more tolerant instead of sighing loudly making them more anxious?

Teach your children to be tolerant of the child in the swimming pool screaming with excitement or the child in their school who still likes Peppa Pig at 8.

Can I challenge you a step further and ask that you be more open minded and willing to listen to adults with autism like my husband who perhaps gets much more hyper focussed on something you may not agree with?

This goes beyond just those with disabilities too. If we were all more tolerant with people of different religions, lifestyle choices and ways of looking at things the world would be a much better place for everyone.

2. Would you resolve to be more inclusive?

How about deciding that this year you won’t exclude that child with behavioural difficulties to your child’s birthday party?

What about stopping and saying hello to the person who is in the wheelchair instead of only acknowledging the person pushing it for a change?

Could you make sure places like churches have areas suitable for young families with babies in prams?

If you really want to make a huge difference how about joining the campaign for changing places toilets to ensure that everyone has a place to be relieved and not just those who at fully able bodied?

Is your work place inclusive for those who need easier access or who need interpreters or use a guide dog?

Could you encourage be more considerate for people with sensory processing disorders or autism and have periods of less sensory stimulation?

Every one of these actions, and many more besides, go a long way to making our society more inclusive for children like mine and I would be so grateful if you would think about inclusion as a brand new year begins.

3. Would you resolve to be more forgiving of parents like me?

This probably sounds strange as we have never met but I would like to ask you to forgive me as a new year begins.

You see there have been times this past year when I have been stressed and ever so tired and I have snapped at people in public because they have so much as looked over at my child while he was upset.

I know I can, and other parents of special needs children can, be over sensitive at times and defensive. Please forgive me.

In our quests for basic things to meet our children’s needs we can come across as pushy, cheeky and even demanding. I am sorry about that.

Parents like me carry a huge emotional burden and we get so upset to see our child unable to have simple things like access shops or access suitable changing facilities in public.

We sometimes get angry at the time it takes to gets changes made it the fact we continually get ignored.

I am asking you to be more understanding and forgiving when our methods may seem abrupt but please please understand that we are passionate for all the things I am asking you to be like tolerant and inclusive.

We just live this thing daily and sometimes we get upset that we face yet another year watching our children struggle when they should not have to.

But you can help that. By being more tolerant and inclusive and understanding together we can make positive waves in 2018 that can help so many children like mine.

Make 2018 a year that counts for all the right reasons please.

Resolutions of a 40-year-old Special Needs Mom

Do they ever stick?  Honestly?  Nope.  With my 40th birthday looming, I recently had an epiphany and realized WHY I need to cling tightly to those resolutions.

I am a Special Needs Mother.  If I don’t strive to take great care of myself and to live a healthier life, I am doing a selfish injustice not only to myself, but to my children.

They will depend on me for many, many years to come and the fear of aging and turning 40 is quite frightening.

I have no desire to have the body of a fashion model or to fit into a size zero.  Those are both unreasonable and laughably unfeasible goals for me.

I have a much bigger picture that is driving me to sincerely want to do better.  Out on a brisk walk with my husband this week, I felt a bit winded as I took in the beautiful scenery and the fresh air around me.

In that moment, I thought of our children and reality hit me.  I NEED to be doing this, working on my cardiovascular health, every day.

The grim truth is that I need to do EVERYTHING in my power to remain here, for as close to forever, as I possibly can.

With every sip of soda that I drink, instead of water, I am starting to imagine the havoc likely being wreaked on my kidneys.

While my daughter with multiple physical and intellectual disabilities only has one kidney, I work diligently to maintain her kidney health.  What if she were to need one of mine someday?

That may seem a little far off to worry about now, but it certainly is on my mind and I find myself reaching for that bottle of water more easily today, rather than my habitual Coca-Cola.

While my daughter is only seven, and still weighs under 40 pounds, I can feel the strain on my back from lifting and transferring already.

I don’t strive to have a weight lifter’s bulky physique, but I feel the desperate need to strengthen my back.

I will carry that princess as long as my back holds out; and I need to ensure that it holds out indefinitely.

My son is thirteen and quite an intelligent young man.  He is also on the Autism Spectrum.

While he has a much higher level of independence than his little sister, I still shoulder great worry for him.

Wherever life may take him, I long to be here to love and support him.

Lately, with the New Year and 40 approaching, I feel compelled to do all that I can to stay on this Earth as long as possible.

The agonizing fear of ever leaving them behind is too much to bear.

They say that there is no time like the present.  Now is the time for change, as I feel 40 quickly sneaking up on me.  The invincibility I felt in my twenties and thirties has vanished.

I want to be here for a very long time, as a Mom, as a caregiver, and as a partner to my husband.  My family is my world.

This year, more than ever, I will work hard to hold on to my New Year’s Resolutions, and to finally convert them into a new way of living.

Special Needs Families: When a Tweet from a Car Park made me Angry at Christmas

She has a Blue Badge and therefore entitled to use a disabled parking space yet many of these were in use by cars with no badge displayed.

On asking about this she was informed that cancer patients were now allowed to use the blue badge parking spaces too.

This lead to her contacting the parking company and in doing so she saw this tweet by them.

When she showed me I was outraged.

Here, in a public tweet on social media, a huge company that owns and runs parking lots throughout Britain and beyond is actively encouraging those without a blue badge to use disabled parking spaces!

Yes I know it is Christmas and I totally understand that parking spaces are at a premium in December but this to me is going too far.

The fact is disabled people and families of disabled children and adults NEED these spaces.

For people like me with two disabled children I need the extra width both sides of my vehicle.

I need the shorter distance to the entrance for safety and I need the extra length to get a wheelchair out my boot.

I am not lazy or in a hurry or can’t be bothered driving a bit further to look for a space.

Yet according to this company I should give up all this simply for Christmas shoppers to be able to park easier? I am sorry Park Indigo but this is outrageous!

The fact of the matter is according to the government’s own website if these spaces had been in a public car park owned by the council what Indigo are advocating would be totally illegal.

So why would a parking company even advocate something that in all other circumstances would be against the law?

Well simply because they are a private company they can get away with it.

In other words they are abusing their rights as a private company and deciding they can do what they like and in doing so disadvantage and discriminate against disabled people and families of disabled people at a time when these parking spaces are needed even more.

Does my family not matter? Do they think that my money is somehow of less worth than that of other non-disabled shoppers?

What is more by not even defining a clear period of when this ludicrous law breaking and discriminatory action is allowed they are actually allowing and encouraging a habit that is dangerous and despicable.

They are telling drivers that it is ok to use a disabled parking space if it is Christmas. They at saying if our car parks are busy then you can trample on and abuse the disabled and we approve.

Oh and we actually want you to do so JUST so we get some extra cash from you using our car park.

What is this country coming to when tweets like this from huge companies are actually not only acceptable but considered ‘normal’.

What sort of world are my children growing up in that says to them that their needs only count if car parks are quiet and therefore others don’t want your space anyway?

I know when I am not welcome Park Indigo UK. I will not be using your car parks in future and I hope others do the same.

Maybe if you required the use of a blue badge then you may think twice about such shocking tweets like this again!

Special Needs Parenting: Side Effects May Include..

In September, two weeks into the new term, Sam had a cold.

Nothing spectacular, just a bit chesty.

‘Probably just needs to cough,’ we said as we popped our little darling onto the taxi and waved him off.

I swear, those words will be etched onto my tombstone.

Just before home-time school called for us to pick him up, his breathing was noisy and he wasn’t happy.

We didn’t make it to school; the next call, minutes later, had us heading to the hospital to meet him there.

Thinking under our breath, “He just needs to cough’, we arrived at resus and froze.

Sam surrounded by medics, monitors screaming, oxygen horribly low.

My baby couldn’t even cry, he was working so hard just to breathe.

Maternal autopilot kicked in, as I comforted him while the Dr’s worked.

Suddenly he took a huge breath in and screamed the place down, the Dr looked a little surprised – I was so thankful!

A child making that much noise is a child who is breathing properly again.

Two nights on HDU followed before he was well enough to come home.

And I was fine.

Until we took him a few days later to Smyths as a reward for bravery.

I was fine, right up until I saw the scooters and bikes.

And then the room got very hot and suffocating, and I couldn’t see properly.

Like some sort of fragile sculpture, my calm, together exterior crumbled away at the sight of those bikes, toys my boy will never be able to play with.

And the horror of the past 5 days hit me like a tsunami. You see, when your child is that ill we retreat into defence mode – becoming hysterical in resus doesn’t help anyone least of all the child, so we hold it together.

SN parents have more than a little experience of seeing our children fighting for their lives, or dealing with painful and distressing procedures.

We’re not immune or numb to the events surrounding us; we hold those emotions back because at that moment the Dr’s need us to be calm and to keep out of their way, so that they can do their jobs and help our children.

But there are side effects to having to hold those powerful emotions at bay, and sometimes crumbling in a toy store is one of the inconvenient ways those emotions find a way to escape.

Special Needs Parenting: Migloo

For me, the worst response is along the lines of, “We understand how important changing places toilets are and we will try to include one next time we have a reason to refurbish”.

I think that is far worse than a simple, ‘No’.

Essentially this response is saying that the business knows exactly what conditions people are facing without a changing places loo, but they don’t care enough to push it to the top of their agenda.

Instead they expect their customers to simply continue using their toilet floors, or staying away completely while they wait until other things need doing too.

It is saying that disabled people’s needs are not a reason to make refurbishments.

That’s why I was so please to recently hear about a solution which might ease the wait and provide a solution before other refurbishments need doing.

There is a small business in the UK called MigLoo, you may have heard of them already as they have a portable changing places toilet which can be set up in a tent at outdoor events.

They seem as frustrated as we are that, despite it being over 12 years since changing places campaign begun, businesses are still not putting them at the top of their agenda.

They wondered how they could help to get more facilities across the UK and realised that their product might be the solution.

You see although MigLoo was originally intended to be used within their marquee set up, the internal equipment is perfect to use indoors to transform any room into a changing places toilet without any building works at all!

So now, any business can provide a temporary changing places toilet simply by placing the equipment in a lockable room and adding a changing places sign to the door!

Sounds too good to be true, I know, but it really isn’t!

The MigLoo solution needs a space of 9m2 or larger, to allow for a turning circle.

It includes the two essential pieces of equipment you’d expect in a changing places toilet, a (gantry) hoist and large changing bed as well as a washbasin, toilet and privacy screen.

In its simplest form the MigLoo facility doesn’t even need plumbing or power as it is completely self-sufficient.

Businesses will be able to lease this temporarily so that it can be placed into their existing spaces within 4-6 weeks.

The facility will then be available to customers for a specified period of time while the venue carries out works to provide a permanent changing places style facility.

In case you are worried that this may be used as a cheap alternative to a permanent facility, MigLoo have that covered too!

They will be ensuring that all contracts have an end date to ensure businesses can’t use this equipment permanently.

MigLoo is designed to be a stop gap between no facility and an all singing, all dancing changing places toilet.

I am imagining shopping malls popping one into an empty retail unit while they wait for a new tenant or supermarkets adding one to an unused office maybe.

There are so many ways in which this could be used to provide something temporary for customers.

My local supermarket has had empty units since it opened years ago so I will certainly be asking them to put one in there!

I have been contacting local businesses who have given me the fob off and told me they’ll consider it in the future and asked them to put this in right now.

Let’s hope they listen!

More info about this can be found by contacting

Why I Wish Toy Manufacturers Would Stop Having Ages on Toys

I wish toy manufacturers would stop having age ranges on their toys.

Now I am not talking about health and safety notices such as ‘not suitable for children under 36 months’ as these are clearly a disclaimer warning regarding choking and small pieces which I totally agree with.

What I am talking about is the likes of this specifying the ages of children they think should play with their toy. I hate this so much.

I hate how this makes children feel.

Children understand numbers from a young age and they see these ages and take them to the letter.

I remember my 5 year old wanting a much longed for toy and then breaking her heart when we finally bought it because it stated it was for children aged 2 years to 4 years.

She felt judged and condemned and broken hearted that she was somehow not meant to play with the toy she wanted so much all because of stupid numbers on the box.

Why should any child feel like this?

Then you have children like my son who have global developmental delay and who will always need toys for a much younger age range than his actual age.

While my son is so cognitively delayed at 9 he would not understand what the ages mean some children will.

Children are not stupid and they see packaging on the toys and feel like they are not as good or as clever as their friends because they can only work toys that are much simpler.

This is so wrong and damaging to children’s mental health.

We are making children feel like babies when they are not just because they like something that a manufacturer feels ‘should’ be played with by a certain age of child.

Do these manufacturers even have children?

I hate how these age ranges make parents feel.

On my son’s Christmas and birthday lists are many toys designed for children under 3. He is 9.

While I am long past caring what others think and instead would rather my son was happy it is so hard for family and friends to be in a aisle marked ‘baby’s toys’ when they are shopping for a disabled 9 year old.

It is a slap in the face to parents and families who already know their child is struggling without having to see blatant and unnecessary ages plastered on toy packaging.

Who says happy land can no longer be enjoyed by children beyond 4? Have you looked at the toys? They are sturdy, durable and encourage endless imaginative play.

Since when did imaginative play with little people, houses and cars suddenly end at 4 years old?

What are we telling our young children about play with having such ridiculous age ranges on toys?

Take a look at the skills that this so called ‘baby toy’ teaches.

These are all things my son’s school are working on with him at 9.

Are the manufacturers really saying that after 36 months these skills are all completely mastered in every child and the child will suddenly no longer enjoy playing with their toy?

Could they not have just put ‘6 months plus’ which would be far more appropriate?

Did you know that by 10 your child should suddenly no longer touch playmobil? I mean why?

What are we forcing children to conform and play with things more ‘appropriate’ based on packaging?

Please manufacturers think before you arbitrarily decide on age ranges for your toys. I want my child to be able to make their own mind up about what they enjoy and gain from playing not you.

I want to shop for my child based on what he enjoys and not be made guilty because YOU think a child of three is the oldest child who would enjoy your toys.

Instead of upper age ranges why not simply put ‘aged 6 months plus’. Let children decide for themselves please. They know what they like after all.

From the mother of a 9 year old Bing Bunny lover!

Special Needs Parenting: My Christmas Wish List

I would strive to be good so that my Christmas wishes would come true.

Now, being a mother myself, I appreciate how hard my parents worked to ensure that we always had a wonderful Christmas.

As a mother of children with special needs, I’ve grown to realize what is truly priceless and my wish list no longer includes frivolous material items.

The things I wish for every day can’t be delivered by a jolly, bearded man on a sleigh.

The gifts that I seek can’t be wrapped in pretty paper or adorned with shiny ribbon.   The presents that I long for won’t fit neatly under our Christmas tree.

They are not commodities or goodies at all, and they require more than a simple wish.

Some of them require loads of diligent work, and others, nothing short of a prayer and a miracle. If I could create a Christmas Wish List to be magically fulfilled, it would look something like this.

1.  I wish that my daughter’s Epilepsy could be cured and that her seizures would become a distant memory.

2.  I wish that the things we take for granted (walking, communicating, eating, etc.) didn’t have to be so challenging for her, and I wish that I could make accomplishing them easier for her.

3.  I wish that I could promise her that there will be no surgeries or scary medical procedures next year.

4.  I wish that I didn’t have to give her daily medications or have to worry about the damage they may cause her solitary kidney.

5.  I wish I could express to her how truly amazing she is and how deeply she is loved.

6.  I wish that my son could see how incredible he is and that Autism doesn’t define him.

7.  I wish that I could make all of his anxieties disappear, and give him a great sense of self-confidence.

8.  I wish that making friends came easily and that kids only showed kindness to one another.

9.  I wish for him to understand his magnificent talents and how intensely proud he makes me each day.

10.  I wish for a world filled with compassion; that everyone would love, help and respect each other, no matter our limitations or disabilities.

I am greatly blessed and thankful for my children; the true gifts in my life.

My family is all that I need gathered around the tree to have a Merry Christmas.

Still, the list of things that I most wish for will always remain, and I’ll always long for them, in case Santa is listening.