Monthly Archives: November 2020

Autism Life, Uncategorized

Our Boy – Rhys!

He came into our lives with jet black hair receiving the name of Jacob Miles … but that only lasted for about five minutes because the second I looked from Rhys to my husband, without a word we knew that was not who he was.

The name however did not go to waste, as we christened a second arrival to our home with that name a month later, and he is quite happy about it. Well at least I think so, he continues to show his gratitude by leaving presents on our front door mat – they are normally decapitated! 🐾

Rhys was a chilled baby. He would sleep soundly and when hungry would feed within five minutes, giving a good four hours to myself before the cycle started again.

He took his time to walk, and it was only at nineteen months that his wobbly legs allowed him the freedom to run around the playground. He never engaged with any other children but would spin continuously while others his age fought over toys or coloured and painted. I put his differences down to a delay in his developmental milestones. The fact that he was not speaking, was pushed to the side, because I saw his strengths in physical development and assured myself that he would catch up.

Rhys

But at twenty months, I started to question his engagement and lack of talking. I started to notice things, like how he wouldn’t answer to his name or respond to any request or call to action. While other children were engaging with their parents for requests for food, drink and the latest toy, Rhys sat looking at the little illuminated numbers on an alarm system or digital clock, everything else around him was non existent.

I would look in the rear view mirror as I drove him home from nursery. He would face directly forward looking at the seat in front of him in a haze. The amazing trees and cars that fascinated other two year olds would flash past with no acknowledgment from the passenger.

I put it down to glue ear and we went through ENT specialists, with hearing tests and wax extraction. But there was no progress. I wanted a solution, a quick fix, but none of the professionals had the answer. It was only after multiple assessments and paediatrician appointments we received a diagnosis of autism. Rhys was three and a half.

That diagnosis broke me. It cemented the fact that life was going to be different. It confirmed that there were challenges, and this was not a developmental delay where he was going to catch-up.

I went through a stage of denial. “Once he starts talking, it will all be fine” I would say to myself. I continued to “treat” him like my eldest son, expecting him to follow instructions and do activities expected of a child his age. However my actions were met with meltdowns, tantrums, confusion and frustration.

I became a prisoner my own home. I didn’t know how to communicate with my own son. Leaving the house meant confusion and sensory overload and Rhys could not cope with the anxiety, uncertainty, strange smells and sounds. His body and mind would shutdown, the only solution it had to coping with a world so scary and strange.

It broke me. It tore me up inside to a point where I wanted to punch a wall with my fist just to feel something, because inside I was empty, drained and without an ounce of energy to continue. It was the lowest point I have ever been in my life. It was not a situation where I just needed to go for a walk to clear my head, it was a time where I couldn’t cope. After hiding behind a fake smile and put-together persona, I did the hardest thing I have ever done. I asked for help. With help I became a different person. A person who learnt to adapt and help my son through his challenges and this scary world he lives in.

I accepted Rhys’ autism and together me and my husband worked with professionals to learn strategies, techniques and what autism meant for Rhys and our family.

Rhys said his first word at four. The word was “Apple” his favourite food. Shortly afterwards he said ten other words. They were “one, two, three, four, five, six, seven, eight, nine, ten”. Numbers are Rhys’ world, and we used this to engage and develop him. Everything we saw and pointed to got linked to a number and counting. “Look Rhys. Three ducks. One duck, two ducks ,three ducks”.

That was only a few years ago!

Rhys can now talk and follow basic instruction. He can request different foods, a tv programme or toy with his learnt phases of “I want please Mummy”. He says “Thank you” when I fulfil his request and he takes himself to the toilet when he needs to go. Rhys is not able to hold a conversation with me about his day or ask me about mine. Everything is functional and is there to meet his daily needs. But Rhys is only seven, we have a lifetime ahead of us. Knowing where we have all come from, the places we can go are now limitless.

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A Disgraceful Return!

I look out the window and see a black car pull into the driveway. Getting up, I walk to the front door and open it to welcome my son home from school. His driver opens the back door and two dark green wellies climb out of the car. His trousers are tucked inside protecting the ends from the dirt of the ground.

Rhys runs up to me, a smile spanned across his face, and I take his backpack in my hands.
“Thank you” I nod and smile as Rhys’ drive leaves for the day.

Rhys has entered the house and is struggling with his wellies, so I bend down and pull each one off his foot in the classic heave-ho technique and then help him with his coat.

Looking down at my son, his school jumper is splattered with a combination of yellow and black colour, and his black trousers have mud across the knees and up the sides. On his forehead there is a matching smear of yellow. I can only assume is paint?

Looking in the little plastic bag, that came home with his backpack, I find his school shoes and a pair of socks. They are caked with mud, while his wellies sit in prestige condition on the side from their recent foot removal.

What’s the story?

I smile at Rhys, and his big blue eyes look back at me. “Good day?” I ask.
“Unizumi?” he responds, a request for his tv show – I get no verbal update on his activities.

I have known parents to moan and complain about the state of their kids when they return from school. The stained jumpers and battered shoes. How their kids should be presentable and overalls should be worn for messy play. Complaints to teachers about the cost of uniforms and disregard for the effort parents have to go through with cleaning.

But they view a messy child different to me. I view Rhys’ state of dress as a story. A communication of what he got up to today.

I don’t want a teacher to clean him up and wipe away the activities he got involved in or cover up the evidence, so I don’t get to experience it. I also don’t want Rhys to not get involved because he would wear an overall – because he wont. I ask my son every day if he had a good day – and I get no response. But I keep asking.

Maybe one day he will tell me, but at the moment he can’t. Rhys is autistic and although he is verbal, he cannot hold a conversation about his day. He cannot tell me what he did or what he got up to. I do get an update daily from his teacher, but a visual like today is a great addition to that story.

It has also taken many years of hard work and engagement to get Rhys involved in activities. To get him painting, or sticking or holding a pencil. Activities that every other child did naturally and was biting at the bit to do the second they could sit up. None of these things came naturally to my son.

When Rhys stands in front of me coated in paint with his shoes caked in mud, I know he took part. He did messy play, painting, and running outside. Maybe he didn’t want to get his wellies dirty, and stayed in his shoes. But he did it!

My son is joining in and the smile he brought home shows me he enjoyed it. I dont need a phone call to tell me he got involved, his shoes and jumper have communicated plenty for me today.

Communication comes in many ways and it is not always verbal. Today Rhys will need to wear his trainers to school while his schools shoes get a scrubbing. And next week his jumper may still have some yellow marks that the vanish spray could not tackle! But he will be back in today, and that is what matters. He will be back in school taking part and developing, just like every other child his age.

Keep bringing home those visual stories, Rhys. Wonder what state you will be in today!

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When Change Becomes the Norm!

“Rhys, all finished?” I ask as he stands up in the bath. I lift him out and wrap him in a grey cocoon, rubbing him up and down to dry him off. He is totally consumed in the towel, with the only visible body part being his big blue eyes poking out from the folds.

“Rhys pyjamas” I say, pointing to the clothes I have laid out on the landing. Each piece in the same sequence I always lay out for his clothes. A known routine he can independently follow. He smiles at me and ditching the towel he streaks across the landing and begins his ‘getting dressed’ sequence. As he finishes dressing himself, I re-adjust his trousers and we continue his bedtime routine.

The ‘Getting Dressed’ sequence

“Rhys, Monkey Puzzle or Room on a Broom” I ask, holding up each book for choosing. “Room on a broom” chooses Rhys, and I start to read. As I tell the tale of the clumsy ginger haired witch, I pause at set intervals to see if Rhys will fill in any words.

“The witch had a cat and a very tall…” I look towards Rhys and let the silence consume the room. It takes a few seconds, but he responds in the desperation to fill the silence and continue the story by saying, “hat”. I smile and immediately continue with the next sentence.

Everything I have done this evening is a set routine. The words I have used, the sequences I have put in place, the strategies around choices and ending of activities, have all been done through months and years of hard work.

Filling in the story gaps!

Four years ago, I was thrown into this unknown world. A world I did not understand, sitting alone with no support or direction, I struggled. I cried and fell into a sense of depression because I was lost and sent down a path I did not know how to live.

I talk about how I struggled because my son, Rhys, was happy. Although he didn’t engage, he was happy and content, locked in his world of excitement and fun. It was only when I tried to pull him out of his comfort zone and push and challenge him, that he met me with meltdowns.

But tonight I thought how my life has become normal. It is integrated with new ways of living and working together. Tonight I took a double take and thought about how my son is still not fully verbal and struggles with social norms and engagement. But I only thought about those things when I deviated from the norm. We have put in such hard work over a number of years, changing how we live and forming a new normal.

Don’t get me wrong, we have tough times and hard days, but so does every other family, whether they have autism in their lives or not.

Things take time. Changes take years. But every little change, every baby step towards a massive goal, means achievement and new successful ways of living

Set those goals. Find new ways of doing things. Ask for advice. Be creative. Every big achievement comes from those little wins.

You can do it.

Just take one day at a time. And before you know it, that big scary change in your life will become your new normal!

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The French Apology

Mummy, Rhys pulled my hair” shouts a little voice from the other room. I run in quickly. Rhys and his sister are both seated at the computer watching their favourite show – Peppa Pig.

Rhys continues to watch the show with a face of innocence, but I know he did it. He gets annoyed at fluffy stuff, and hair that is not pulled back neatly into a pony, and tossles down a three year olds face. If he wants her to stop talking he touches her mouth, in a method that is so much easier than using speech. Because talking is difficult for my son, communication doesn’t come easy.

I believe in teaching the difference between right and wrong, there is always a lesson to be learnt. Those lessons can be just simple ones, letting a child learn at their own pace, and move at the level of their ability. But I believe that as parents we have a role to teach and find ways to ensure our children grow up to be adults who care and do good.

Before Rhys was verbal I had implemented a method where he had to apologise for wrong doing. I was creative in the process and ensured Rhys understood when he had done wrong. I would change the tone of my voice and use only one word – ‘naughty’. Then I would get Rhys to give the inflicted party a hug as a physical sorry.

Unfortunity the hug has remained as he has become verbal. That’s the thing with autism. Everythibg I teach Rhys takes ages, and hours of dedication, but as soon as Rhys gets it, it sticks. So to change the process that has been implemeted or tweak it, takes just as long!

So sorrys still come with a hug!

The face of innocence

“Rhys, naughty. Say sorry to Jessie” I request as two innocent big blue eyes look up at me. He acknowledges my request, leans into his sister and gives her a hug, but at the same time gives her a big smooch on the lips.

“Uuug! Rhys” comes the response. I ignore my daughter’s over dramatised response and happy with the apology delivered, I leave them to continue with their television show.

Later that night, as I gather the kids to bed, I announce “Ok everyone, say good night to Daddy!”

Each little human approaches their father and gives him a cuddle. As Rhys approaches to say goodnight, he leans in and gives his father a kiss.
“Uuug!” shouts my husband.

“What?” I asked taken back by the reaction.

“He just slipped me some tongue!”

Well looks like my three year old may have got a bit more than she bargained for earlier today! Things have all gone a bit French in this household!

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Striking a Chord!

We have a little toy keyboard, which we got as one of the very first presents when children filled our house. It has sat in the music box and still gets pulled out from time to time for a bit of a living room jam. From before Rhys could walk, he has been attracted to music, he played the keyboard key by key with meticulous precision, in comparison to his siblings who did the standard toddler multiple key smash!

Times have moved on, and although the small toy keyboard still remains with the other instruments, we have upgraded to a full size unit, with full size piano keys, beats and lights.

“Ready?”

“Ready” shouts Rhys.
I position my hand on the keyboard and press the G key, initiating the tune. Two little hands are placed on his head, as Rhys enacts the song, now for the fifteenth time!

“Heads, shoulders, knees and toes, knees and toes” he sings. Each word linked into the correct key as I move up and down the keyboard. As I come to the end of the tune, I pause once again and a little voice announces, “Ready” his hands on his head ready for another round.

I have not yet got him to play any notes, but this is a new development. A task of engagement where Rhys is asking me to play the song, and as I play he joins in with the words and actions. Bit like a duo 🙂

My plan is to use Rhys’ love for music, and through my playing introduce him to the love of pressing the keys in sequence himself. I am no Mozart or Chopin but I am proud of my lockdown goal of playing the keyboard. So far I have three songs in my musical cv – Heads/Shoulders, Wheels on the Bus and Twinkle Twinkle! So not quite at the level to knock out a Sunday Service, but I am confident that I can play one of those songs by ear the next time a piano presents itself!

There is a lot of research around the strong link between autism and musical ability. It will be lovely to see Rhys play one day, but for now the engagement and fun we are having is enough.

It is like an old movie or Christmas card as I sit at the modern piano playing while everyone gathers around and sings – well that is the image I am going to portray to everyone! It is actually a bit more chaotic and repetitive. But we are both having fun.

Watch out Von Trapps, we got this!