Tag Archives: SEN

Autism Life, school

Autism Annual Reviews: It’s a Joint Approach

It is tough having your own development and progress analysed and dissected.

It is a hell of a lot harder when it is about your child.

I have been to many annual development reviews for my son. Some I walked into happy and confident, but left in tears, with a sick feeling in my gut and emotions that took months to heal from.

However, the last few years I have left feeling empowered and motivated to strive forwards to new targets and goals.

Annual reviews, for special needs children, vary extremely and unfortunately it is down to the people who support your child, their ability to communicate, support and collaborate together towards a common goal.

For Rhys we are always honest. We sit down as parents before every review and we discuss the truth – nothing sugar coated or missed, everything factual. We discuss what we want Rhys to work on, where we are not seeing progress and where we need help as parents.

Then we send the black and white text to the school, our submission for review.

Reviews are tough, they highlight the struggles, they are the formal way of showing how far your child is behind their peers. But they also shine a light on the achievements and goals they have met over the year, and whatever we need to do to get more of those moments, is what we strive for.

Every review we focus on Rhys and what he needs, or how we can work with the school to smash new targets.

We are lucky.

We have a great school setting and support for him, where school and home can blend into one. Where his teachers know all about his family and out of school activities, and we can work with the school to jointly focus on the same elements.

But it has not always been that way. I have left previous reviews and meetings feeling the need to throw up in the playschool gutter like a cheap drunk who can’t handle their emotional booze!

It took time and setbacks to find the right setting for Rhys. The support we get now was not handed to us on plate, it was fought for and as a result of set backs and tough emotions, we found our way.

The annual review is there for parents, teachers and professionals to ensure the best for their child and their needs. If your child is not central to those discussions or you as the parent are not getting what you feel is in the best interests of your child, you are part of that review and have a equal say in changing that.

Make sure you fight for your child. Prepare yourself for the review. Focus on your child’s needs and how you can all work together to achieve it.

Autism Life

Autism Activities: How One Boy Found Judo

The children stood in pairs and took their judo holds, ready for the signal to move. Rhys was in position, standing opposite a boy, who was about the same height, with brown hair, cut short and a reflective t-shirt under his jacket.

But my son wasn’t in a pair. A black belt stood behind him, whose arms came around Rhys, hand over hand as he held the judo hold that had been instructed.

As the signal came, they moved. The physical support for my son guided him in the motion, helping him fight his opponent, until a leg spotted a weakness and the fall rendered defeat.

Not one word was spoken.

The teaching was adaptive, and non-verbal.

But the skill being taught was the same.
The throws and the methods were the same. The desire to learn was the same.

I have been turned from away from so many other activities and groups, with comments like:
“This is not the right setting for your son”
“Maybe wait a few years for when he can follow instruction” or
“We don’t have the funding to support him!”

I see these examples of ableism everyday.

I hear it in conversations. At venues where my son is not welcome. In processes which restrict my son’s ability to participate.

Verbally telling Rhys to do a task, or to sit in line or catch a partner, is not an instruction he is able to easily understand or formulate in his mind.

But why restrict the learning of a skill to one way of teaching? A method where only those able to learn that way can learn?

Restriction is discrimination!

It’s ableism!

Restricting to one way of teaching has meant my son has not been welcome.

Not welcome in many, many situations.

And it means he has been excluded!

Rhys’ judo club is not a special needs club, or a club that has funded one-to-one support. It is just a club which turns no one away. It is a club that wants to develop the skill of judo, no matter what method of teaching is needed to achieve that.

It only takes the commitment to adapt to allow all to thrive. And by thriving we can all look to develop further into a community of strength and inclusion.

There are no excuses to discriminate!

Autism Strategy, Haircuts

Autism Haircuts: Top 11 Tips to Ensure Success

With autism goes sensory processing challenges. And haircuts are the ultimate challenge for all things sensory.

People have spoken about physical pain at their hair being snipped, and others have explained the unbearable feeling as their hair is brushed or combed. These challenges are all before even considering the environment, the noises and most importantly communications.

But success can be achieved when you know the steps to tackle. It is about taking on step at a time, ensuring awareness of the process and what to expect.

Let me share the top tips for haircut success.

  1. Speak to the hairdresser about your child’s needs. I have found them to be very accommodating and keen to help. If they aren’t, go to the other hairdresser on the other side of the road, cause it is not like we are in short supply of options.
  2. After explaining the situation, ask the hairdresser if it is possible to come in 5 minutes before they open. I have never found this a problem, as it only takes 5 minutes to cut a child’s hair, and they tend to always be in a bit before opening time to grab a cuppa or get the different tools out.
  3. Arriving before they open and discussing your child’s needs, lets your child have the salon to themselves with no hairdryers, no fresh strange shampoo smells, and even the opportunity to ask for the music to be turned off and lights dimmed.
  4. Book the top hairstylist. This is due to a number of factors. They are experienced and can provide an excellent cut on child’s head no matter what contortion they put themselves in. They are quick, so less time in the stressful situation. They tend to be the manager of the salon, so something simple as turning down the lights does not need anyone’s approval.
  5. Before going to the appointment, visit the hairdresser a couple of times, with your child. Go inside and have a sit down. Take some photos to show before the appointment. This is all about becoming aware of the environment. Do this at the beginning of the day when it is quiet. You may need to do this in stages, firstly just going up to the door, and working up to actually going inside.
  6. On the day of the appointment, explain to your child where they are going. This can be verbally if they understand, pictures if they want to look at them, or my personal favourite, YouTube clips of a child getting their haircut to provide familiarity of the situation ahead.
  7. Brush your child’s hair before you leave the house. This removes one task for the hairdresser and starts a bit of desensitisation on their scalp. The hairdresser can immediately start cutting as soon as you arrive.
  8. Don’t feel your child needs to sit in the hairdressing chair with a cape around them. Let your child sit where they like. Offer to clean up afterwards.
  9. Distraction is key. Take an ipad, book, chocolate, favourite toy or do your signature crazy dance to entertain them while the hairdresser does her job. You have the place to yourself, so who cares what you look like.
  10. Keep to a simple cut. In my opinion, I have always kept Rhys’ hair in a long surfer cut. It allows for easy cutting, zero styling, and if he does miss a haircut, it is not as noticeable.
  11. At the end provide loads of praise.

You may manage to get your child’s hair cut following the above or you may not. It is about progression and taking one step at a time. However if it doesn’t work, there is an alternative option, and this is what we have now done.

Special needs schools have qualified hairdressers that cut the children’s hair. Phone around the special needs schools in your area, and get the name of the hairdresser that visits the school. These hairdressers tend to be freelance and will come to your house.

Follow the same steps as if you were going to a salon, the pictures, hair brushing and distractions. The benefit of a special needs hairdresser is that they know about things like autism. They are not scared about an anxious child, and accommodate and adapt to your child’s needs. They are also supper quick and will cut your child’s hair in the broom cupboard, if that is where your child feels safe.

I would recommend getting a siblings hair cut at the same time, or if you don’t have one, get a friends child or your husband to have their hair cut. This avoids you feeling bad about a hairdresser coming to your house and your child refusing a haircut. At least the hairdresser will be able to do someone else’s hair instead.

At the end of the day, if all fails and your child finds a haircut too distressing, remember, it is only a haircut. There are a lot bigger worries in our lives and our children having hair halfway down their backs is the least of them.

I suggest reading the below in conjunction with the communication strategies on this site as everything we do is better through communication.

Throw Back

Milestones Worth Celebrating!

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I remember standing in a gymnastic hall. All the equipment surrounded me, the parallel bars, beam, trampolines and other strange equipment that I don’t know the name of.

Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

Kids ran around us joining in with the toddlers open floor session. Some joined in with the songs and their corresponding actions that were being enacted on the open floor. Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

As parents followed their children around the different pieces of apparatus, I could overhear a parent next to me. Her little girl was about two, and carefully tackling the well thought out obstacle course that had been setup by one of the instructors. Her mother held her hand as she walked over the soft mat up to the low ground-level beam. “Come on darling” she said “you can do it”.

The little girl was nervous but reluctantly put her first foot forward, the only stability she had was from her arms which she spanned out on either side of herself to distribute her weight. As she took each step, she came closer and closer to the other end of the beam. Her mother slowly walked next to her, judging if she was going to make it, ready to grab her hand if the wobble became a potential slip or fall.

The mother watched her daughter’s every step, but she only watched with one eye, because her other eye was on the rest of the room. She checked to see if anyone else was witnessing this achievement in the making. Her daughter was in her element, she was reaching a milestone worthy of an applause.

As the little girl took her last step and accomplished the great feat, her mother lifted her in the air, and slightly louder than required said “Well done, you are amazing” then swung her around and looked for the next opportunity for success.

I turned away from this celebratory event and stared down at Rhys. He sat on the floor oblivious to all the people, children and noise around him. I followed his line of slight across the wide open space and up the wall about ten meters away from him. Half way up was a white clock, the numbers one to twelve around the edge.

Out of all the activities, entertainment, and gymnastic equipment, he had chosen the item that had the least relevance to the situation, but an item that meant more to him than any of the things that surrounded him.

I had no hope of getting Rhys to walk a beam like that little girl. I had no ability to even get him to engage with the room. The clock on the wall was his only interest, not the ability to display his achievements of somersaults or dismounts off a low beam.

Since this situation about five years ago, I have overheard many milestones being celebrated by parents. They are being celebrated in parks, play centres and all across social media. A video of a child’s first words, or a little boy initiating a pee all by himself behind a tree because he knew he needed to go!

Rhys is accomplishing so many things, but often I feel that I don’t have enough words to describe the mountain we have climbed to achieve them. It is so hard to explain the feeling when Rhys runs down an unknown path for the first time, or he says “drawing”, taking a pen in his hand with no reluctance, or he understands a simple command like “pass me that book!”

… to others it just doesn’t seem to be as bigger deal to them as it is to you.

It is a feeling of wanting to shout it from the roof tops. It is not like the mother in gymnastics who secretly invites you to share in the accomplishment. In contrast, you want to fly a banner through the sky and publish it in a newspaper. But to others it just doesn’t seem to be as bigger deal to them as it is to you. Their children did all these things as part of their ongoing development. They are not milestones they recorded or celebrated. They just happened!

But that doesn’t matter because they are not their child’s achievements. They are Rhys’ achievements. They are the result of hard work, and I have realised that I don’t need the acceptance from others to confirm that they are worthy of a bottle of champagne, because I know what we have gone through to achieve them. He may have taken a bit longer or a lot longer to get there. But it is not a race, we all do it in our own time.

There is no need to look to others for acceptance that something is worthy of celebrating. We all know that feeling inside when something remarkable happens, and when I look at Rhys, I know deep down he is celebrating with me too.

🕝🕑🕧🕣🕞🕜🕟🕢🕥🕙🕦🕚🕠

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A New Place To Sleep

I hear a sound through the darkness. It is quiet at first, then the noise gets a bit louder. I lie still as a rock, not wanting to give away my awake status to the occupant sharing my slumber zone.
If I just stay still and pretend I am in some sort of deep sleep – the game of patience, the game of who breaks first.

I am strong, I will not break.

The murmurs continue, and get loader, turning into a situation which confirms a wide awake occupant next door.
“Where’s Mummy gone?” come the shouts. A learnt phrase that is muttered in any event of stress.

I am beaten.

The request has come for me, and no matter what I say, my husband will use this request to his advantage. “He called for you” he would say, and when you have prayed for years for any ounce of communication, things like a shout for his mum cannot be ignored,

I literally roll out of bed, my pyjama bottoms having crept up to my knees during my previous hours of sleep, and my vest top is in some sort of disarray.

I ignore my appearance. It is 3am, so my fashion sense has no entry into review, as I walk sleep drunk into the room next door.

I look down at my little blonde boy in his bed. He looks up at me, love in his eyes for the person he has wanted.

I look back at him.

I have two choices, firstly to crawl in beside him, in the lower bunk and take my role in the mutual war to claim some bed space. I might get a few hours of sleep, and I am assured that Rhys will get some too. But the bunk is low, and I have been the co-sleeper in this bed for too many nights, I want to try something new. A deviation from the norm!

I want to try a suggestion that my other two kids request on a nightly basis, to which I give into every now and again. It is something that Rhys has done about twice in his life. Something bizarre to him, because bedtime and sleep is done in his bed. Because that is how it is done.

But I am tired. My bed is big and warm. An investment in a super king which was done for these reasons.

So I test the water. I make the suggestion. I hope for a change to the norm.

“Rhys, come sleep in Mummy and Daddy’s bed?” I ask reluctantly.

I suddenly stand in shock and take a breath. Rhys crawls from his bed, and takes my hand. Teddy’s arm held tightly, determined to join Rhys in his new bedtime adventure.

We walk the long ten steps to my bed, each step I hope that this is going to be the solution, but knowing changes to routine can be catastrophic. We walk onward in the dark, my hope to keep the sleepiness at bay.

As we reach my side of the bed, I lift Rhys into his newly found bedtime space for the night. I then climb beside him, and crawl under the covers, Closing my eyes, I hold my breath in the hope Rhys will settle and sleep.

As I lie in silence, a small arm suddenly wraps itself around my body, and all is calm.

A moment so small, but so big for us. My little boy wanting to climb into our bed, and being able to find it so comforting that he goes back to sleep straight away. Not movement or squabble.

It’s the little things that keep us going. The little middle-of-the-night cuddles. The little changes in routine which happen without planning or even knowing.

This kid is doing things his way, even at 3am in the morning!