Tag Archives: Autism

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Decisions Are Not Forever

The chair is hard and uncomfortable, as I shift back and forward, crossing and uncrossing my legs in nervousness. There is a sickness in my stomach as I sit and listen to the comments being spoken to me from the other side of the table.


“A quiet environment will suit him better”

“He is not at the level expected for his age”

“We are not going to be able to meet his needs going into the future”

“We are not equipped to meet his requirements”

I sit silent, letting each word hit me, like small pellets being thrown at me, striking one by one. I don’t respond.

Every day that we had collected my son from school I had been met with positivity, and updates on how well he was settling in. His home book had details of tasks he has completed alongside paintings he had constructed. He had settled in.

I sat in shock at being thrown a curve ball, a switch from daily positive updates to an annual review where every update defined my son as not meeting the grade and in a school that could not accommodate him. There is nothing more hurtful than getting told that your child doesn’t belong and every comment cementing the fact that he is different.

An assessment had been done and the results were pushed across the table to us. I read the scale which defined the developmental age range, and then looked at the assessment for my son. It was separated into categories of social interaction, literacy, physical development, and mathematics. Every category placed him below his peers, which was not a surprise, but what struck me was that he had been assigned a developmental age of a year to eighteen months in many of the categories. Rhys was four years old.

The school couldn’t meet his needs!

I disagreed with the method of assessment, I believed that giving a minimal score for literacy, because he couldn’t read aloud was unacceptable, and that marking him down physically because he couldn’t jump when requested verbally, disadvantaged him due to the inability of him to understand perceptive language.

But I still sat silent.

I sat silent because I was using every ounce of strength to hold back the tears. I was not prepared for the bombshell they had just delivered with no positive comments of how amazing my son was and the progress he had made over the year. I had no response prepared, because I had been hit with something unexpected.

We left that day, and I cried. I ran through so many things in my head of what I should have said, about what I should have asked. But in the shock, I had just sat there and let the words hit me like rocks. The school was not right for my son, they couldn’t accommodate him, we should look at a different setting!

But although at the time I had started to construct a delayed list of words and comments I wanted to return, I am grateful for what they did. They forced us to make a decision that has changed the path for my son. His autism makes him different, it means things are approached differently, and they were right, that school was not the right fit.

We visited many schools and gathered feedback from different parents on their decisions and experience. I seeked professional guidance but received no help, just the response, “You know your son best” – but I didn’t! I knew nothing about what my son needed. I had no experience in the school system or the world of autism. It was a world I had experienced for less than a year. The truth, I believe, was that if the professionals did provide guidance a large percentage of children would be referred for specialist care, but the system just cannot accommodate it.

Within six months of that school meeting, Rhys moved to a new school. I fought every barrier and even found direct contacts within the education system to ensure he got the support he needed. Rhys joined a special needs base at the beginning of his second school year. They specialised in autism, with the additional advantage of still being within a mainstream school. He would have the professionals on site, moving at his pace and teaching him with methods suited to his development.

It was an emotional time where our expectations and future vision had been shattered. The pain of rejection towards your child is heart breaking and knocks you backwards, it hits a spot you don’t even knew exists. At the time I couldn’t make a decision with my heart, so did it with my head, detailing the factual reasons why a school move was the right thing to do.

Rhys changed schools eighteen months ago.

Last night my phone rang. Rhys’ teacher spoke on the other end of the line, she spoke positively about every aspect of Rhys and his development at school. His excitement when he arrives and all the end of year activities which are being planned.
But the unexpected update was around his engagement. She spoke about how he interacts with the other children and the friendships he has formed. Coming from a school where he sat on the side-lines, trailing behind the level of his peers, and unintegrated in the classroom, to be told your child, with social challenges, has friends, is something I have no words to describe. He is part of a group, he is part of the class, he even has a best friend.

The right decision

The decision I made with my head over eighteen months ago was the right one, and I am grateful for that annual review that left me in tears. They did the right thing, because moving Rhys was the right thing to do for him, even if I found it difficult to accept at the time. And if it had not been the right decision, it was something we could have looked at again and changed.

Because a decision is for that moment with the information you have at that time. If over time those details change, you can always reassess and take a different path. But you will not know unless you take that leap and try.

Head to my Facebook page and share your thoughts. What education solution has met your child’s needs? What was your experience? Are you struggling to make a decision?

TOTS100 - UK Parent Blogs
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Day Out

The Big Eat Out!

“Shall we get some food?” asked my husband as we walked out of a successful bowling family outing. We were all on a bit of a high from a family activity that had gone to plan. I looked up to see what he was referring to and saw a burger restaurant was in front of us, it was a takeaway, sit-down-if-you-want type of establishment. I assumed we would grab some food to eat on the go, as we have not sat down as a family in a restaurant for many years, longer than I can remember.

Rhys doesn’t do sitting down, waiting for food and social norms like eating out, are not part of his agenda. He will shuttle run up and down between the tables, and if the opportunity presents itself, he will run out an open door. There was once a situation where he didn’t want to sit at the table with us and decided to sit down at a table with an old couple who were on a quiet meal out. They didn’t seem to mind, but probably wondered what was wrong with us!

We find eating out stressful, and have therefore discounted it from family activities, resorting to a quick take away, picnic or lunch at home.

Until now. We decided to give it another try!

We took a chance, and as the food got ordered, I ushered our family into a booth. We all sat across the table from each other, Rhys included, and I thought to a picture I had seen earlier on my Facebook feed. I thought of families who regularly go out for food together, they snap a shot of them all around the table, conversing and enjoying a meal.

Here we were sitting, just like that family in the photo I had seen earlier.

Happy

We were however naturally contingency planning, knowing that our food could just be packed up and taken with us if something went wrong.

As we dished out the food, Rhys wouldn’t touch his hotdog, and pushed away the chips, but he sat there with us. He was happy to sit calmly and watch us eat, and look around at the sights of the restaurant. We all took our time eating our burgers and shared a strawberry milkshake, passing it around letting the paper straw get soggier with every sip (not the best decision!).

The environment was calm and stress free. A feeling of achievement washed over us. Our whole family out having a meal together, without one of us jumping up every two seconds to retrieve Rhys or calm him down.

As we sat, we took a photo. A photo that means more to our family than any other family’s weekly breakfast meal out. The first photo of us having a meal out together. The first photo ever.

Our first restaurant meal together!

We sat as a family eating a meal. The first meal together in a restaurant in forever.

There are no more words to describe the feeling of achievement and success. We are all moving forward in this scary world, and goals are limitless. Who knows what we will achieve next!

What are your experiences of eating out? Head to Facebook and let me know your story.

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!