All posts by AMe

A Tribe Worth Belonging

Lonely

That’s I how I felt!

It was the feeling of being left behind. The feeling of everyone else being part of a crowd that I did not belong to and could not belong to. We didn’t have the criteria to go along with the crowd. The crowd whose children were running around together, being surprised by new adventures, making their first friendships, talking and conversing with each other in a natural untaught way.

There are so many feelings that overwhelm you when you realise your child is not “the same” as everyone else’s. There are feelings of fear, the unknown, anxiety, hope, upset, stress, and sadness. But the feeling that trumped it all for me, in the beginning, was loneliness.

My group of friends who continue to be everything to me, handed me words of reassurance, “Everything is going to be ok” and “I am here for you” and “He will catch up”. These were the phrases they recited, in the way that every friend would do. My friends have continued to be there for me. They have celebrated our achievements, and they have been a shoulder to cry on when I have had no where to go. But they were also as knowledgeable in autism as I was at the time, when I was beyond clueless.

My friends went on outings together and sat on the side catching up with a cuppa and cheeky piece of cake. Their children ran around within their line of sight. They were probably having the normal parental stresses you would expect, like checking where their child was at all times, and concerns if they fell or lost their friends. But they looked relaxed and enjoying the world they lived in and the progression their child made, in how it was expected to be made.

I often sent excuses to these catch-ups. It was easier than trying to explain that Rhys wouldn’t enter the location they had planned. Or try and describe the meltdown he had experienced the week before, at the entrance, not even managing to get into the foyer. The failure I felt inside not knowing why or how to solve an issue I did not know existed. The embarrassment from people staring at me and me not knowing what to do to rectify the situation, with my main focus being on getting the hell out of there.

In the occasions that I could get Rhys into different establishments, I was not the parent sitting on the side sipping a cup of tea and talking about the latest gossip. I was in constant sight of Rhys. I would panic about him physically pushing a younger child, not because he was violent, but because that was how he communicated – physically. I would be trying to apologise to a parent who was appalled about how Rhys had approached their child, explaining something I actually had know knowledge or experience about. I was too vulnerable to stand up and explain, finding myself apologising and edging away, because I was broken and unsupported in the mist that surrounded me.

At this time Rhys did not have a diagnosis. Autism was a word I had heard but knew just that, the word. I knew none of its context.

I was alone in a world of confusion, and could not even start to imagine how it felt for Rhys.

My friend’s children continued on the recognised path of development, and we moved in parallel, at snails pace. We were extremely behind and didn’t have the stepping stones they had to progress. We just drowned in a world we did not understand or know how to navigate through. I didn’t know where to look for help or information and support.

I stayed behind closed doors for a long time. Battling through the process with paediatricians, speech therapists, psychologists, occupational therapists and ENT surgeons. Just to name a few.

I was alone. This was a norm I had never heard about, with everyone else leading ‘normal’ lives, with the remaining being part of a secret autism society I could not get the membership card to.

It was when I went on the early bird course lead by the National Autistic Society that I started to connect with other parents, just like me. They were just normal families with the same struggles as us and roamed the same places we did (there was no secret group who were hidden away – they were among us). I had found people who I could talk to. People who understood the complexities of autism – from a parent’s perspective. We laughed about things that I would never share with my ‘non-autism’ friends, because they just wouldn’t get it.

I call them my Tribe. A group who are there to support, fight and laugh together over things that other ‘normal’ families do, but also the other things that only we understand and get.

In the UK, 1 in 100 people are on the autism spectrum, and there are many more that are undiagnosed. If you include families in these figures, you are looking at 2,8 million people in the UK with a first hand experience.

You are not alone if you or your child is autistic. Walk down the street and you are guaranteed to pass at least one autistic person. Search famous people and there are amazing individuals who are have changed or who are changing this world in way a no Neurotypical person can.

You will already know someone with a link to autism. I know this because every person I have spoken to about my son has either confirmed that one of their family members are autistic or a close friend or colleague.

Autism is everywhere, and the feeling of loneliness I felt, was short lived. As soon as I lifted my head up and spoke about it, a whole new world opened up for me, and in turn allowed me to enter into Rhys’ world and help him and broaden it into mine.

We need to raise the awareness of Autism. We are not alone in this. We are part of this and part of a world that needs a range of different minds to move forward. Different doesn’t mean unable, different means flexibility, perspective and progression in different ways. Ways that can achieve amazing things.

👨‍🦱👨👳‍♂‍👩🧕👧🧒👶

TOTS100 - UK Parent Blogs
TOTS100

Spinning to Success!

At Rhys’ three year developmental check, the health visitor sat with an assortment of toys and papers in front of her.
“Rhys, can you stack the blocks?” she asked, placing three inch square blocks in front of him.

Rhys paid no attention to the lady and casually placed one block on top of the next with no effort. He managed eight blocks all sporadically aligned but perfectly balanced.

I didn’t gasp in amazement or shine with pride at his efforts. Rhys built block towers all day long. He hadn’t followed an instruction, he had just seen blocks in front of him, and done instinctively what he knew and loved.

He failed every other test that day. He failed because every test required Rhys to follow an instruction. A bundle of words that were just noise to Rhys from a strange object that sat in our living room.

From that day on, he failed every “test” because of the communication and engagement element that is vital to prove Rhys could do something. It was the foundation to everything in order to move forward.

I had a little boy who could not talk, but even more relevant was that he couldn’t understand or process language. A simple request to a three or even four year old of “pass me that toy” while gesturing to it with pointing, made no sense to Rhys. The physical action of identifying an object coupled with words, was foreign to him and just a jumble up of sounds and hand movements.

My strategy was to get him to understand a handful of words and associated actions. Things we could build on, and add to engagement opportunities.

I would place an object in his hand and say “Take to Daddy”, initially taking him by the hand and getting him to deliver the object. Through repetition, these physical prompts associated with words, started to form connections in his mind that made sense. He began to follow the commands without fail.

Things were slow, but we kept on powering through.

As I sat on the floor this evening reading to Rhys’ older brother, Rhys sat playing with a Lego helicopter. He spun the propellers around, enjoying the motion. However Lego is only a pile of blocks at the end of the day, and a vigorous spin will always end in a disastrous way.

“Mummy, help Rhys” he asked, holding the propeller out to me. The decapitated helicopter lay on its side about a meter away from me on the carpet.

“Rhys, get helicopter” I said, pointing to the red lego toy.
“Mummy help” responded Rhys, touching the propeller in my hand, reconfirming his request.
I tried again but with a different word. “Rhys, helicopter here” once again pointing to it.
“Mummy help, broken” Rhys replied, getting slightly frustrated.
I gave it one last try, ” Rhys, pass helicopter”

Something triggered in his mind and in the split second that he looked at me, I knew something was about to happen. To my amazement, he followed my finger and reached for the helicopter, bringing it to my open hand.

Something turned in my tummy in excitement. I placed the propeller on top of the red roof, gave it a test spin and held it out for Rhys. Of all the action words I used, none were part of Rhys’ mental dictionary, until I used the word “pass”. The word “pass” was what made a difference today. The word “pass” is going to open up so many more opportunities going forward.

I held out the helicopter to Rhys, but before I removed my grasp I asked, “What do you say?”
“Thank you” he replied.

I smiled and eased my hand from the toy.

Things will happen when you least expect them, and often it is just slight changes like a different word or action, that result in amazing things.

I was so proud of Rhys tonight, as I watched him return to spinning the toy. I was proud at how far he has come and the development barriers we both break down together.

🚁🚁🚁🚁🚁🚁🚁🚁🚁

TOTS100 - UK Parent Blogs
TOTS100

A Mucus Worth a Second Look!

“He’s been sick!” came a scream from the hallway, “OMG! Come help it is everywhere!”

I jump up and run out of the lounge where I am greeted with my husband and a headless Rhys.
“It’s all over his hoody, help me get it off!”

The top has got wedged on Rhys’ head, the hood part gathered up around his neck, closing any gap which will allow us to get it off!

Rhys stands waving his arms around in his temporary blinded state, “Stuck, stuck” he shouts in a voice which is slowly moving to a tone of fear and potentially will end in only one outcome – one of meltdown.

“Watch his ears!” I shout – unsure why shouting is necessary, but seems to feel apt in these sort of situations. I push my fingers between Rhys’ neck and the orange material of the top, easing it over the one side of his head, but it pulls the other side tighter where my husband is attempting to do the same thing.

“We need to communicate!” he shouts, agreeing that panic shouting is necessary. Rhys adds his continuous screams for freedom, claustrophobia setting in.

We look at each other, a plan formed without the need for words. After a bit of agreed coordinated communication and team work, we somehow contort Rhys into some sort of gymnastic position and relieve him from his temporary restraint.

Rhys stands in the hallway, his bare arms poking out of the t-shirt, his little face one of confusion after the ordeal he has just had to be part of.

“Where was he sick?” I ask, still in a volume a bit to high for the situation, but my heart rate is still slightly elevated from the rouge hoody incident.

“There” says my husband pointing to the kitchen floor, while gagging, his mouth open and a paleness overtaking his face. (And he calls himself a man!)

The floor has that mucus type sick which is normally produced when the stomach has nothing left to throw at you.

I take a deep breathe and grab some kitchen roll and spray while Rhys gets a wet wipe and check over by his father.

As our panicked voices subside and we get on with our assigned roles, a little voice, which has been quiet for the last ten minutes, breaks through the silence.
“Make cakes?” it says. Rhys’ face has a questioning look, and still in a slightly confused state.

I look up bewildered, and slightly thankful that my son is feeling ok enough to engage with us.

Then my husband laughs, a little to loudly, and stops consoling his recently vomiting son.

“What’s so funny?” I say, while on my knees, spray in hand trying to return the floor to its recently polished, clean state.

“He wanted to make cakes!” confirms my husband, and then shows me the frying pan from the morning’s breakfast, containing a broken egg amongst some egg shells.

I look at the manky, used kitchen towel in my hand, small pieces of egg shell are visible amongst the mucus.

“I guess we are making cakes!” I say.

“Chocolate cake!” says Rhys.

“OK, chocolate cake!”

🍰🥚🤢🍰🥚🤢🍰🥚🤢🍰🥚🤢

TOTS100 - UK Parent Blogs
TOTS100

Can We Let It Go?

In 2013, the epic film telling us all to just ‘Let It Go’ hit our screens, with crazy round bellied snow men and reindeer with strange impressions crunching carrots. Little girls ran down hallways in snowflake encrusted gowns, trains of material temping the naughty foot to entice an unfortunate trip up.

For those without kids, you may think the magic of Elsa faded as those young children grew up. But I can reassure you that the magic still goes on and she has still not let it go!

My youngest (now three) is the next generation of frozen enthusiasts, even getting hooked on the sequel (dvd release), and my eldest from the first generation of frozen excitement, still has the magic in his bones.

Santa was thoughtful this year and sent an amazing Easy Keyboard Tunes book of Disney songs, including all the classics, from bouncing Tiggers to the tune of the monkey wanting the secret of man’s red flower. But it would not have been five star Amazon rated without the Frozen classic, and thankfully it did not disappoint.

The book’s crisp pages were turned with each song receiving a gasp of excitement, by my eldest, as he marvelled at the selection of choice.

“This one he shouted” and placing the book on its holder, he lined up his fingers on the keys.

Now my middle son, Rhys, loves music, but has become quite particular about the songs which can be sung and anyone in the house striking up a tune. Many reasons spin through my mind, from the lack of perfect pitch his audience emanates, to the song versions not correlating to what he has playing in his head. His autism means he likes things in a certain way, and lack of tune does not rank highly in his book.

Music has always been part of his life.

But we carry on, and find new songs which he doesn’t know, therefore ensuring the tune can form a new connection and experience for him. We have got very creative over the years.

So when my eldest decided to strike a note it was going to be interesting to see Rhys’ reaction.

The first few notes started to be played representing the first words of the classic tune we had all grown to love (or is it hate?) As the notes moved through the song, in a clunky, unusual flow, I could hear the familiarity in it.

My eldest didn’t sing the words, the concentration of the first run through of the notes was enough at this moment. But as we listened, a tiny voice who had never sung the song in his life suddenly came to life in the next room.

🎵 Let it go, let it go … 🎵

“Did you hear that?” I shouted to my eldest.
“Rhys is singing the song” he responded.

We both beamed with pride at what we had heard, these moments are magical in our house, the sudden demonstration of development or proof that we are moving forward with engagement, speech and interaction. The sign that we are doing things right!

We immediately both broke into tune, ecstatic that Rhys had picked up on all the years of frozen excitement and was ready to experience in a joint love.

🎵Can’t hold it back anymore
Let it go, let it go
Turn away and slam the door
I don’t care what they’re going to say …🎵

We were both belting it out, the keyboard notes all over the place, our inability to multi task so early on in our musical immaturity. We were bopping around thinking we were West end stars, both understanding the leap forward Rhys had made in recognising a piece of music and then assigning the words.

But our impromptu party was abruptly halted, as Rhys entered the room and screamed full pelt at us. We felt like misbehaved school kids who had taken a bit of classroom jubilee a step too far, the noise trailing down the corridors to the heads office.

The singing stopped, the dancing halted, and my eldest clawed back the excitement placing his fingers calmly back on the black and ivory to play the notes properly.

But the words didn’t stop,

🎵 Let it go, let it go 🎵

Sang Rhys, all on his own without the fuss of us crazy nut cases!

TOTS100 - UK Parent Blogs
TOTS100

Mum Is A Super Hero!

A mum casually gets out of the car at the supermarket and lifts her two year old son into the trolley. The little baby is fast asleep as he is lowered into the trolley still in his car seat. They enter the supermarket casually, the two year old clutching his soft toy cat and pointing at the seagull perched on the car roof.

On entering the supermarket, they walk up and down each isle gathering each item on the list. The two year old speaks in full sentences, his communication way beyond what is expected at his age, telling his mum about the Okapi, which has a stripy bottom like a zebra and the top half of a horse. He is concerned that they are now endangered, and how he can help them to survive. The mum admits to herself that she has never heard of such a creature, and can’t work out where her son has come across such detail on the animal.

As they approach the bakery section, to tick bagels off their list, a frustrated father stands watching as his little girl lies kicking and screaming on the floor. He doesn’t seem to be doing anything As the girl screams and kicks out, he grabs a bag of chocolate donuts, and hands one to the girl, who takes it and calms down.

“My children will never act like that”

The mother takes some bagels off the shelf and stares at the scene in front of her. Appalled at how the child has “won”. There has been no lesson learnt here, the child will continue to throw a tantrum the next time she wants something. “My children will never act like that”, she silently thinks.

This woman in the supermarket, was me 5 years ago. I had it all together. I had never been closely subjected to disabilities or hardships that many parents face on a day to day basis. When I saw kids misbehaving, I assumed bad parenting. If I could have control over my children in public places, why couldn’t everyone else?

Image: http://www.kindynews.com

When the word autism started to be mentioned in regards to my youngest son, Rhys, I had no clue what it meant. I had no experience or knowledge of autism, all I had was the image of a kid rocking back and forth in the corner. People often mention the film Rainman, but I hadn’t even watched that!

When he got his referral for speech therapy, I was excited and truly believed that he would walk into a session, and the expert would look at him, wave her magic wand and tell him to talk…and he would. I wish someone had told me how it actually worked and the process he would have to go through before he would even say his first word.

The reality was that I didn’t even get him into the room for the first speech session. This was the baseline I had to start working from before I could even consider trying to get him to communicate.

As Rhys grew older, I became the parent in the supermarket with the child in meltdown. I had transitioned from this totally in control super-mum to a parent in the school playground, trying desperately to get my eldest into school, while Rhys was in full on meltdown on the playground floor.

Parents would be staring at me, and the ones who had enough courage, would come up to me and ask, “Are you alright, anything I can do to help?” I would sometimes hold back the anger, but mostly the tears, and pray that the ground would open up and swallow me.

Every morning I would wake up and think “Today is going to be a better day”. My positive hat was on and I was ready to take on any challenge. But each day was no better than the one before, and sometimes worse. I would try to do normal every day chores, but was met with meltdowns. I started to lose confidence in my abilities, and as each day became more challenging, the energy and drive I had before, started to fade.

As time moved on, the school run became unbearable. I would manage to get the kids out of the house, only to be met with Rhys distraught as he had thought we were going in the car, only to now be dragged across the road to the school. A task that was so simple to every other family, the need to walk a few meters across the road, became too much for me.

“They told me that I would develop a thick skin!”

I didn’t know how to move forward. I felt sorry for my eldest son, who had to endure a screaming brother alongside him and a mum who was still in her joggers and bed-hair, trying to get across a road. Life had taken a 180 degree turn and I couldn’t do it. When I started to meet other mums whose children had autism, they told me that I would develop a thick skin and that my focus must be on my child and I need to look at ways to decrease any anxiety or triggers that would cause meltdowns.

I had to take a step back and work out how I could cope with this change to my life – as I had previously known it.

I was not the super-mum I use to be. I was a mum who had to work out how to cope. I gathered friends, family and professionals to help me get back into a place where I could start to move forward. I stopped doing the school run and my husband shifted his hours at work to be there to pick up our eldest. It was alarming to think that it was impossible for me to walk across the road to collect my kid. But it was.

“I AM GETTING MY Supermum status back – just in a slightly different way!”

I had been broken down and lost all confidence in myself and the ability to find strength to do the simplest of tasks. It took 2 years to get to where I am now. I can now pause and think “I am doing it, I am in control”. I am now a mum with 3 kids, one who is autistic, but I feel I am getting my super-mum status back – just in a slightly different way.

There have been many strategies learnt, some advantageous and others just not practical. But we are getting there. Most days are now “good days”, and challenges come and are conquered. They have made me stronger and able to take on more than I ever expected I could.

When I see parents in public places, with their children kicking off, or having a full on meltdown, I now look at it in a different light. That child may be overwhelmed and have challenges they are trying to overcome. The parent may not have a clue what to do, or they may know that that a chocolate donut will distract their child enough to allow them to calm down and deal with the situation at hand.

We cannot look at a situation in isolation and think we know better, or assume we know what is going on in that family’s lives. We don’t have the back story or the full picture of what challenges all parties are facing.

We all need support and need to accept each other for who we are. We are all trying our best at this monstrosity called life. So don’t stare and mutter under your breath a comment that will be of no assistance to anyone. Look to see how you can help, or if you don’t know how to help, a comment such as “We have all been there, you are doing ok!”, will work a treat and help that person take a breath and grab that magic donut.

TOTS100 - UK Parent Blogs
TOTS100