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Planning with Blue!

I sit down with my phone and Google the forest area we plan to visit. There are some lovely photos of the area, but I am looking for a specific one. It doesn’t need to be pretty or taken in the perfect light for submission for an annual photo award, but it does need to show the venue and its distinct characteristics.

I find the perfect picture of the entrance, the lettering depicting the venue very clearly. The path proceeds ahead with trees on each side inviting the walker to go ahead. I save the image and then continue to search for a few more images. There are some wooden sculptures along the walk that the children can search for and sit on if desired. Saving the images to my phone, I feel planned and ready for our forest adventure.

Sequence of Events

“Rhys, shoes then car, forest and sculptures” I say, pointing to each picture in turn on my phone as I state its relevance. I use minimal words avoiding complex sentences with unnecessary descriptive language.
Rhys looks at each of the images. He is comfortable with the shoes and car, he has seen those on many occasions, but the forest is new. He looks at the picture, its archway entrance surrounded by nature. I put his shoes on and then run through the pictures with him once again. We tick shoes off the sequence, as I say, “Shoes finished, next car”

Grabbing the backpack containing some snacks and spare clothes, I hold Rhys’ hand as my husband takes charge of the other two. “What sculptures are there? Will there be a fox?” shouts my eldest in excitement. “I want to see the fox too. I want to see it too!” shouts the little one as her father tries to close the door behind him.

“Come on then, let’s go see them”

I buckle Rhys into his seat as his siblings join him, pulling out my phone once again, I show him the picture of the destination, ensuring he is clear about what order of activities are going to happen.
As we pull off and drive away from our house, I turn to my husband, “I forgot to grab that bottle of water!”
“We will be ok.” he responds, because turning back to the house is not what we have communicated. It will confuse Rhys, because in his head we have car then forest – home does not feature in the sequence. So we drive forward, agreeing to steal some of the kids squash if we become too parched.

It is not far to drive, a key consideration for our trip out. As we cruise down the country lanes, there is not a car in sight, until we round a corner and realise our timing is flawed. Cars are parked on the verges of the small country road, everyone having the same idea as ourselves.

“The carpark must be full” I comment, as my husband drives passed all the parked cars and pulls into the forest venue. Families with small children and their family dog are running up the lane excited for their day out. The parents walk casually chatting, having decided on a quick impromptu day in the dry weather, happy to have found a place for their car only a hundred meters away.

We drive up the little road to the carpark and let out a sigh of relief. A disabled spot sits vacant directly opposite the archway entrance of the picture I had placed in the sequence. Every other parking space is taken, with cars being creative by parking in extra spaces.

We pull into the disabled spot, and I climb out. Opening the back door, I once again show Rhys my phone. “Car finished, now forest” I say. The picture of the archway on my phone corresponding with the real life archway in front of me. “Forest” says Rhys acknowledging the day out.

Rhys climbs out the car, jumping in excitement. Our other two children join in excited to see the sculptures. I feel a knot deep in my stomach, the feeling I always get from the hope that a plan will execute successfully. Today it looks like it has.

As I stand holding Rhys’ hand, the archway entrance in front of me, my husband fiddles in the car. He places the blue disabled badge on the windscreen, dipicting our time of arrival, alongside a photo of our son.

I look at the families walking up the path from their cars which have been parked all the way down the lane. They look at me, with my physically able son and family. The normal springs of excitement and smiles on their faces. A lady tuts loud enough for me to hear, followed by a man behind her saying (in an audible tone), “Where’s their disability?”

The disability is invisible. We look like we don’t need to park in the disabled zone. Everything has gone perfectly, Rhys is totally able of walking, we have over an hours walk ahead of us which he will manage with no issue!

So why do we take up a disabled spot?

Nature’s Medicine

The sequence of pictures I showed Rhys and communicated multiple times was key to our success. If we had parked a few hundred metres down the road, like other families, the visual representation of the forest entrance would not have been there. The pictures would not have corresponded to the reality presented. The day would have ended either in Rhys refusing to get out the car (we weren’t there in his opinion) or a meltdown due to the confusion.

I could have carried him to the entrance (kicking and screaming in meltdown) but even if I could show him a delayed visual of the entrance, the meltdown would be in full swing with nothing but the option of time to let it pass (it could be hours). He would then have been physically unable to walk, his brain shutting down mentally with his body dropping to the floor.

I have experienced this. I have lived through the importance of planning and sequence. I have seen the look on my other children’s faces, when their brother has been unable to cope, and I have had to watch their excitement fade as we get back in the car and go home. Leaving a good day out for a meltdown wait out.

So when you see a family, who looks just like yours pull into a disabled spot, don’t tut or comment or gossip about it. Look for the blue badge. If it is there, that family has been through assessment and awarded it for a reason. Think of how lucky you are to be able to just jump in your car and go on a day out. Think of how you can surprise your children with an unknown venue or just freely take life as it comes.

Hidden disabilities are disabilities too!

We can’t. But that is ok, because with the right systems and support in place we can be just like every other family. We just have a different way of doing it!

Head to my Facebook page to let me know your thoughts. What is your view on hidden disabilities and the use of disabled spots. How can we help share its importance?

TOTS100 - UK Parent Blogs
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Dressing it Down!

Tomorrow when you drop your child off at school, dressed in their something spotty for BBC Children in Need, there may be a child in line, in their school uniform. Naturally we think about the parents. How they have forgotten or sadly, in some cases, just do not care.

I hold my hand up as being one of those parents. Hopefully not the one who doesn’t care, but the one who has forgotten. I will even give myself credit for getting my children suited and booted, to find out it is actually an inset day, and just a month ago I sent my daughter to nursery dressed head to toe in a Halloween outfit – one week early for the celebrations.

And the forgetfulness does not just stop with me…

Last week, my eldest said to his father, as they were leaving for school, “I haven’t had any breakfast!” to which my husband responded, “I haven’t forgotten, we are going to eat and walk!” then grabbed a hot cross bun and some crackers while trying to hide his feeling of embaressment.

I’ll be honest, I haven’t even made a dent in my confessions. From the quantity of emails with instructions of cub badge completion, to spelling tests and odd sock days, I frankly don’t know how we manage to pull it off. As parents we must be assumed to have nothing else to do but coordinate kids activities and school requirements.

I would like to personally thank Amazon Prime for its two hour delivery service, as it is a large contributer to our family sucessfully meeting the needs of school email criteria!

Also on top of all this, I have a job and a life too. Not that I am any more organised in those!

But the point is that sometimes it looks like I have messed up, but actually I have also done some things in a certain way on purpose. I sent my son to school in his uniform on dress down day. It was not because I had forgotten, I knew perfectly well it was happening, but I ignored it! Also I didn’t do it because I was lazy or didn’t care for my son’s needs. I actually did it because I was in tune with my son’s needs.

Rhys is autistic, which means many things, but fundamentally means he likes structure. We also have to communicate in different ways to the standard family down the road, because verbal language is difficult for him.

School uniform means school, so wearing his trousers and polo shirt means that he knows it is a school day and not a weekend. It triggers the mental note of what is going to happen that day. It avoids confusion, a meltdown and any anxiety that is introduced through even a small change (such as different clothes).

But here is the point.

Rhys doesn’t care being in school in his uniform, while his peers are all dressed differently. But I think one day he will care. Also children ask questions, so when he stood out in his uniform, I felt he stood out even more than usual. A situation I wanted to tackle and find a way around. Which I did, and have done so for the past year.

So to all those parents in the same situation, dreading tomorrow’s dress down for Children in Need, give this a try.

Tomorrow, I will dress Rhys in his dress down clothes – his new spotty t-shirt! Then I will put his school t-shirt over the top of his clothes – I have his brother in on the act, who will do the same. This forms a visual representation of the day for Rhys, that it is a school day, and the mental association of a school day routine.

After breakfast, as we get our coats on, I will take Rhys’ school t-shirt off (so will his brother) in a quick t-shirt / coat switch over technique, and we will then leave the house. The mornings activities and structure will follow in the normality of a school day.

Tricking the System!

This method has worked wonders for us, and the best part is that Rhys will be just like all the other children arriving at school, in his dress down!

Let me know if you try it tomorrow.
Let me know if it works.

TOTS100 - UK Parent Blogs
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A Bolt Forward!

“Rhys, hand” I ask as we walk out the house, my hand held out for him to take hold of. He continues to walk forward ignoring my outstretched grasp. I grab the sleeve of his coat as he darts past me. His hands are hidden in the sleeves and I try to pull one out, but he resists and contracts his fingers into a fist.

Our routine is planned and executed in the same way each day. We leave on the hour giving ourselves sufficient time to walk around the corner and down the road to pick up my eldest from school. The two roads are busy with cars and buses on the school commute and I have held Rhys’ hand every day, on route, to ensure his safety.

“Rhys, hand” I request firmly but he will only let me cling to his coat sleeve, refusing the restriction. I pause and think for a minute.

I am one of those over cautious parents. As I look up and see a pair of four year olds running freely ahead of their parents, my stress levels starts to rise. I consider the risks on those kids, the sence of danger and the consequences that could result. Those parents aren’t worried. But their situation is different to mine. Those parents don’t have the sprinkle of autism involved like in our scenario.

But we do have some things.

Over the years we have worked on the word “Stop” which Rhys responds to. I have also worked on routine and we have walked this route to school tens of times. The same pavement trodden and the same noises, sounds and smells experienced. The scenario has been tried and tested and therefore there is an opportunity to push the boundaries and check our progress.

“Let’s go, Rhys” I say and start to walk forward. He walks next to me, but seeing his new sense of freedom he suddenly bolts forward and runs at full speed down the pavement.
“Rhys, stop!” I shout. It takes a few seconds to process, but he stops and waits for me.

Running ahead !

We continue in the same vain all the way down the busy road. Rhys watches the massive bus wheels and runs ahead, but always stopping on my command. Not once do I hold his hand, and although I am on constant alert and a high sense of unease, he is following my command and walking independently.

We have moved from a situation of not being able to leave the house to a situation of walking unrestrained! That is massive for us! That makes us feel more part of this world that everyone else lives in! The world further away from the stresses we once experienced.

The feeling of walking casually on a school run while my son runs ahead is a place I never imagined. But here we are, totally rocking it.

If you are not there yet, don’t give up. Things take time. They take years. Just take one step at a time. And you will get there!

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!