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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!

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Age Has No Limit!

To my eldest son,

On Monday you asked, “Mummy what is autism like?” I told you my answer, and we sat and watched an animated explanation, showing how your brother sees the world differently to you.

As I waited outside the school gates for you yesterday, you saw us and came running up with your arms held wide. “Hello, Rhys” you said, taking your brother’s hand in yours.

The cars flew by us on the busy road, and you mentioned the noise and how scary it must be for Rhys, remembering the video we watched and the enhanced sensory overload that would have met his ears. You turned to him and said, “It’s ok Rhys, I’m here” as you held his hand all the way to the park gate and away from the noise.

A few hours later while we sat in the car, you asked “Will Rhys always be autistic?” I responded “Yes, but with our support he will be able to do everything you can do”.
“Except for maths” you immediately corrected “Rhys is good with numbers, he will need to help me!”

We continued to speak about our own challenges and what we found hard. About how practicing the tough stuff makes it easier, and where it is too hard to overcome, tricks, strategies and even technology can be used to make things possible.

As you sat in the back of the car with your brother, you said “Rhys help?” as you took his kinder egg treat from his hands and helped him with the wrapper, his little fingers struggled to open. You used simple words when you engaged, in the way you have seen myself talk to Rhys. You know how to communicate with him and instinctively know when he wants help. His trust in your actions is evident, in his willingness to let you help him.

I don’t think I ever had the maturity you have when I was your age, or even twice your age. The view you have of autism out performs the attitude many adults I have ever come across. Your ability to see the best in everyone and not being afraid to ask questions and help others who don’t find things as easy as you. That is the mark of an amazing character.

My worries for Rhys’ future decrease every time I see you next to him. Your keenness to learn, to understand, to support are beyond the abilities found in many fully grown adults. Don’t ever be afraid to stand up for your brother, no matter who questions you. You don’t support him because of his challenges or his autism, you support him because he is your brother, and that’s what brothers do.

I am so proud of you every day. With you at Rhys’ side, I know you have his back. But you don’t only have his back, you back up every person who has challenges through autism. You raise awareness through your need to gain knowledge and the help you give your brother.

And you are only eight years old!

Love you always
Your Mum
Xxx

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Red Card Day

Today we show racism the red card!

There is no reason to mis-treat or discriminate anyone due to their race or colour of their skin. We are all humans, share the same planet and breathe the same air.

You may wonder why this photo shows my three kids in red but Rhys with a green shirt? There is a reason.

Autism means any change in routine can result in confusion and a melt down. On days like today, where the school uniform is ditched for a good cause, it plays havoc with our standard routine. Without his uniform, Rhys thinks it is the weekend. This leads to confusion and major upset when he is taken out the door to school.

It was so difficult and upsetting, for such a minor change in a day to result in trauma and anxiety. In the past, I would just send him into school in his uniform. He didnt care. But I felt like the mum who had forgotten about dress down, even though what I had done was a lot more than “forget”.

I then had an idea🤔. The next dressdown day I laid out Rhys’ dressdown clothes with his school tshirt at the end. I helped him put his school tshirt over the top of his clothes. He saw the what he was wearing and immediately knew it was a school day!

At the last moment, I pulled off the school tshirt, put on his coat and send him out the door.

I have done this every school dress down day since…..and it has worked. Rhys can now support every worthy cause by handing in his coin and being dressed down like, everyone else. It is one less difference for Rhys to deal with due to his Autism!
Everyone’s a winner 😁

#showracisimtheredcard #autism #thinkingoutsidethebox #strategies #youcandoit