Tag Archives: hidden disability

A List of Battered Items!

Its busy. There are people! Which in these viral times can make things a little hairy! But I am winging it, I have a plan, which most probably will fizzle into a complete disaster within seconds – but it is always good to try.

“Rhys, shopping list” I say, handing him the laminated card which contains five pictures of items we need to get (although there is always going to be more, especially when you hit the miscellaneous isle of Lidl).

All is going well.

Rhys has decided to forgo his standard exercise routine of shuttle runs up and down the isles, and has resorted to the integrated trolley buggy-board option. With his feet secure on the little step, he holds onto the handle of the trolley, with the shopping list placed in front of him.

“Rhys apples” I say, coming to the first item on the list. I hand the bag to him and he lobs it into the trolley, letting them bruise themselves on landing.

I sigh and make a mental note to do the eggs myself in a few minutes!

Taking Rhys’ hand I help him move the apple picture to the right, off the list. He is not happy about it, and screams at me. It is that high pitch scream that penetrates your bones and lingers in the air. People turn expecting a decapitated body or horror scene. But everything is in its place, just a little boy being asked to move a picture!

The Shopping List

We move on, people stop staring and turn back to their business.

“Rhys, pizza next” I say pointing to the little picture of a pizza. I lift four boxes from the fridge and hand them to him.

He throws them into the trolley, each box landing on top of the bruised apples, on some sort of scattered ensemble. I try to contain my urge to rearrange the trolley items, directing myself back to the task.

Once again I take Rhys’ hand and we move the pizza piece across.

He screams!

We move on.

As we walk I rearrange the trolley, and throw in a few extra items which Rhys’ pictures don’t include. I have kept Rhys’ list simple to ensure I keep his attention. Too many pictures would become overwhelming, especially as this is the first time doing this.

As we round the next isle, Rhys shouts, in a volume for everyone’s enjoyment, “ALL DONE!” I look at the list, he has removed the remaining three items across to the right had side.
“Car” he says.

“No Rhys, we need jam, grapes and ham” I say, placing the three pictures back to left of the card. He is reluctant but lets me compete my task.

As the jam is thrown onto the grapes and topped with a few packs of ham, we walk towards the checkout.

“How are you today?” Asks the cashier.

“Bloody fantastic” I answer.

And I am.

As I push my battered shopping out of the store, I am happy that we have shopped together using a list and a new form of engagement. The other shoppers may have seen things differently, but for me, this was progress.

Maybe next time the screams will be a little less audible, and the apples a little less bruised.

But for now, we will survive.

πŸŽπŸ•πŸ―πŸ‡πŸ”

What are your shopping trips like?

TOTS100 - UK Parent Blogs
TOTS100

Counting to Speak

When your child doesn’t speak, all you dream of is to hear their voice. To listen to what they have to say. To have them answer a question you so desperately want to ask.

When Rhys was three he had ten words. Those words were one, two, three, four, five, six, seven, eight, nine and ten.

Numbers were his world, and still are.

He loved flashcards, and would pile them up, holding them in his hand, a support blanket, counting their contents constantly. He would find the fancy educational cards that marketing companies had devised as the best mathematical toolkit for young children. He would find playing cards, and would count the number of spades, hearts, clubs and diamonds. Puzzle pieces would be collected into a pile, or little wooden toy tiles, or coins from a toy till and then shifted through and their totals determined.

I would sit next to him and watch as his finger moved touching each image on a card, his mouth speaking the number as he counted. Once finished he would take the next card from the back of the pack, bring it to the front and start his count once again.

Over time he started to tolerate me counting along with him. It took time, but often he would scream back at my interruption to his game.

I managed over time to allow him to take control of my finger, and instead of him touching each picture on the card, he would guide my hand to each object and count.

I was in. I had opened the door to his world.

Months passed, and cards continued to be Rhys’ passion. But I knew I had to find a way to pull him away from his numbers and introduce more words. Numbers were not going to help him request items or move forward to becoming more independent. Words had to have context and meaning.

By the age of four, I was constantly counting along with him, and decided to find a way to introduce the words for the images on the cards.

“One shoe” I said one day as Rhys placed my finger on the first image of a shoe on his number five card. As he heard my words, which now included something additional from the norm, he kicked off. He screamed but retained my finger on the first shoe image, waiting for the word associated with it, the word “one”. The word all by itself.

But I refused to back down. I repeated “One shoe” and then forced my finger to the second image next to it immediately stating, “Two shoes”. I thought that if he realised that we were still counting, and that the process was still the same, he might accept the change.

Rhys was not happy with the change, but I persevered, and over time he started to realise that we were still counting. My plan started to work.

From that point onwards, I used numbers in everything. When we were in the park, I would crouch down to his level, point and say “Look Rhys, three ducks. One duck, two ducks, three ducks” When I was dragged to the cupboard by my hand for food, I once again would crouch down and say “Rhys, one rice cake or two rice cakes” I would never get a response, but new words were being added to our engagement.

It took time, a long time, years in fact, but it worked. We started to get new words. But more importantly, Rhys’ engagement increased, he was becoming aware of other things in his environment. The numbers interested him and allowed him to count real world objects, outside of his world of flashcards.

We limit the use of flashcards now. They tend to close him off from the world, but yesterday while I was clearing out a drawer, Rhys found some old number puzzle cards which had been hidden months ago. He immediately shuffled through them, like he did years ago, and started to count the images.

This morning he sat next to me and took my finger in the same way he had done a few years ago, and looking at me said, “Count with me” As he placed my finger on the first picture, I said “One”. He paused and without moving my finger he look up at me, waiting.

That’s when I realised that I had done it wrong. I had not counted the little picture of the Seahorse.

“One seahorse” I corrected.

Rhys then moved my finger to the next seahorse, and looked up and me, full eye contact – the strong engagement we had worked on for so many years. “Two seahorses” I responded, his reward for his eye contact.

We have come so far. A game that we played so long ago, came back to show us the progress we have made. And that progress has been gigantic.

Things take time. Find your child’s obsession and use it. Add words to their interest. Use their excitement as a tool for engagement.

And don’t ever give up!

I didn’t!

πŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒπŸƒ

TOTS100 - UK Parent Blogs
TOTS100

‘Twas the Night Before a Different Christmas

‘Twas the night before Christmas, when all through the house
a creature was stirring, a lot louder than a mouse.
The stockings were hung by the chimney with care,
But instantly pulled down, cause they don’t belong there!

Other’s children were nestled, all snug in their bed,
while mine had numbers and overload consuming his head.
And Mama was tired she felt really crap,
She wanted a Christmas like those other people had

When out in the corridor there rose such a clatter,
I sprang from the couch to see what was the matter.
Upstairs my son had escaped with a flash
Entering his room I heard a loud crash.

The moon shone its light through the curtains with a glow
While the Christmas stocking lay alone on the floor down below
It was not welcome, it had been a strange thing to appear
‘Cause he didn’t know about a sleigh and eight tiny reindeer.

I tucked him in calmly with a kiss so quick
To him there was no person called St. Nick.
But Christmas is not what it is to claim
We can call it something different, a new name

“No Dasher! No Dancer!
No, Prancer and Vixen!
Or, Comet! Or, Cupid!
Or, Donner or Blitzen!
The strangeness is scary
With meltdowns a plenty
So dash away! Dash away!
Dash away, No entry!”

I unwrap every gift to remove the surprise
Making it clear what has been left to find
We listen for murmurs of our little dude
Because a load full of toys will be left for him too.

As the morning light dances onto the roof
Little footsteps can be heard while we’re still aloof
As I draw my covers downwards I look all around
My boy comes into the room with a bound

He is dressed in his pyjamas, from his head to his foot,
and he announces for rice cakes, I go have a look
The toys sit untouched all alone in a stack
My boy has grabbed the familiar toys he knows back

But my boy’s eyes-how they twinkle! His smile, so merry!
His cheeks are like blossoms, his feet a little smelly!
His little mouth is drawn up in a smile,
His blonde hair so bushy in one big pile
He opens his mouth and produces a gap in his teeth
He brushes past the big unfamiliar Christmas wreath
It is just a normal day with a bit of telly
Just like every other day full of jolly

As food is prepared with goodies from the shelf
He holds an apple, the outcome from stealth
A wink of my eye and a twist of his head
I soon realise that this is not a Christmas I need to dread.

As the others eat turkey and all the trimmings
My son sits on the couch with with his Christmas bringings
A pizza with small hot dogs on the side
Who needs a spread when your favourites are tried

We don’t need a Christmas card representation
It’s our family Christmas, our own homemade tradition
We don’t need the presents or big fat old bird
We don’t need the silence where nothing is heard

Cause Christmas is a tradition made our family’s way
Where you can do what your like, your own special day
And if that is the same as everyday before
That’s OK, it makes it less of a chore.

So Merry Christmas to all on this strange dark night
Where we do things differently, we do them right
As I look at the smile on the face of my son
He creeps quietly upstairs because he is done.

Merry Christmas Everyone

🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠🏠

TOTS100 - UK Parent Blogs
TOTS100

Key to the City!

After the day I had today, I am officially getting the key to the City. A blue key that will open doors for us.

Literally!

We are in tier 4, also known as, absolutely-no-where-to-go zone. We had to get out, so realising that every park was going to be heaving I just said “stuff it”, pulled on my mask and hoped the outdoor air would blow any new covid mutations in the opposite direction.

It went well.

The boys scooted, scaring innocent bystanders with their Tommy Hawk style swerves, making them jump the required two meters in distance. I sweated as I ran to try keep up, screaming “STOP!!!!” in the same amplification of voice and tone as shouting at a thief running off with my bag! Arms and legs waving like a frantic lady unable to control her brood.

I make a mental note that Ugg boots were not the right shoe for this type of occasion!

But this was the norm for us. There was no stress, just fresh air and stares from the public who are not use to our unique family quirks.

The playground was crowded, but with sufficient space. So everything went smoothly, from shouts of “RHYS, DONT PUSH THE LITTLE GIRL” to “RHYS GO” when he had been sitting at the top of the slide for five minutes, a queue (not socially distanced!) formed behind him. He didn’t care!

It was all going extremely great until, “TOILET!”

I didn’t have the travel toilet with me, so feeling like we had been swinging and sliding for a sufficient length of time, I summoned the troops and we scooted up the hill to the amenities.

THESE TOILETS ARE LOCKED FOR YOUR OWN SAFETY said the sign.

Little do they know what is safe, when your six year old is screaming “TOILET” and does not do such things behind a bush!

There was only one option. “READY, STEADY, SCOOT” I shouted, and the boys pushed off from the ground and scooted like I have never seen before. The half mile race commenced. They swerved around the ankles of the slow walkers, dodged ducks and even did a few bunny hops over the not so smooth parts.

At the end of path, the transition into the car was record breaking, and the spinning of the car wheels, as we took off, made me feel young again.

But we didn’t make it!

The car seat was the worst hit, and Rhys struggled to accept the situation, crying “Jeans wet!” until I got him cleaned up and changed.

So I now have a key in the post on the way to me. A magic key that will open every disabled toilet in Britain.

Not sure about you, but that is a pretty magic key in my opinion.

πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘πŸ”‘

RADAR keys are available to people with disabilities and can be purchased from your local council, www.disability.co.uk or many other distributors.

TOTS100 - UK Parent Blogs
TOTS100

A Funny Face!

Autism is …

… your child never naturally engaging or joining in. It is when you try everything to get them involved, but realise you need to set your expectations lower. Set them at basement level, because then, the only way is up!

“Let’s do face painting” shouts my little girl, bringing me a old box of face-paint she has found in the toy box.
I open the box, it is slightly hardened, but after a few drops of water, we are ready for princess faces or super hero villains.

“Sit back” she says, holding up a blue coated paintbrush to my face. I close my eyes, firstly for relaxation, but quickly notice the need for safety!

It is a win-win situation. My little girl gets to paint, and I get a free facial. The paintbrush glides over my face and I feel tingles throughout my head. Lush! I could sit here all afternoon. Maybe when she is done with the painting we can move onto playing hairdresser, or she can run her dolls feet across my back in an imaginary royal parade.

These are the parenting moments I live for.

I am however pulled out of my relaxed state by laughter. Opening my eyes I am met with two big blue eyes and a mop of blonde hair. My daughter has been pushed to the side, while my son takes amusement from my newly painted face. Tbe crazy lines and marks are a comical addition to his laid back afternoon.

“Rhys, paint?” I ask, handing him a paintbrush coated with face paint. My expectations of my son joining in are still at rock bottom. Knowing from past experience that face painting is not something on his ‘fun’ agenda.

Holding out the paintbrush I am immediately proved wrong. He takes it in his hand, bringing it to my face and adding some new lines to my shocking appearance.

He then steps back and giggles.

I have no clue what I look like, but I would put on any funny costume every day to have this type of engagement and interaction.

My expectations have left the basement and are now on cloud 9. I have my son laughing and enjoying a family activity. Something impromptu without the planning, stress and complexity that so many other activities have had.

We keep trying every day, and every now and then we get these moments which come out of nowhere.

Don’t ever give up. Keep trying to engage with your child every day. It will sometimes feel like you are going backwards but one day you will see your child jump a hundred steps forward.

And it is these days we live for. Because they are the successes that give us the strength to keep on going.

πŸ˜‰πŸ˜‰πŸ˜‰πŸ˜‰πŸ˜‰πŸ˜‰β˜ΊπŸ˜‰πŸ˜‰

TOTS100 - UK Parent Blogs
TOTS100