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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
The tears ran down my face. They came from a place of hurt and stress and uncertainty. The result of the feeling of nothingness. A sense of loss. The loss of the life I thought I was going to have. A vision where me, my husband and three kids, would go on crazy day trips together, create memories and do the things that every other family did.
My life expectations had been pull out from beneath me. They had been wiped out of my life plan, my vision for the future. My son had received his diagnosis. A diagnosis, that although would never change who he was, it would change the way I thought our life would be.
I started to ask myself questions.
I started to worry.
The worry was for every day things. The stuff other families just did without thought, but for us would take the planning of a board of directors.
The worry about his education, how he would learn to write, to read and to add up numbers. I worried about his future and whether he would get through high school, and then what? What would he be capable after that? Would we choose mainstream or a special unit? I worried what that all meant!
I worried about small things that were actually such big things.
I worried about small things that were actually such big things. Like whether he would ever form friendships or have a friend. What about the traditional marriage and two point four children? He currently wasn’t socialising, or able to talk or integrate or follow instructions. How would he ever have a friend? Would he be alone and not feel that bond with someone? Would he ever experience the fun, naughty and exciting things that friendships guarentee?
I wanted him to come home and tell me about his day, about what he had done, and where he had gone. But he couldn’t. He was pre-verbal, not a sound to convey or even the ability to converse in any other way to tell me about his daily adventures. I worried that he had been sad, or bullied, or alone, or even had an amazing day. I never knew. My son just stood with a blank stare, and not a word muttered, not a sound exchanged.
I worried about where we could go or how a situation would play out. Often outings were filled with stress, with meltdowns, with stares from strangers who tutted and wrote it off as bad parenting. I lost my excitement due to the worry that things would just crash and fall apart. What reason was there to get excited in what was doomed to fail?
I worried for my other children who had to take this challenge on their own shoulders. Who had to be on the sidelines missing out on things which should be guarenteed as part of their childhood. I worried about how they felt when their brother was in a state of inconsolable distress, and their feelings ignored while my focus was fundamentally on controlling the more intense, urgent situation on the floor in front of me.
I knew we needed to change. I couldnt continue with the worry, the uncertainty of my son’s future.
So we changed.
We shifted our mindset, realising that the future could only be influenced by what we could influence today.
We started to disect every situation, and analyse every step. Me and my family worked together. We striped out the worry through factual analysis and plan execution.
And with that change we started to move forward.
I realised that the only way I could change the future was by shifting my perspective. As I looked down at my big blue eyed boy, with his long blonde surfer locks, I saw a child with purpose. A child who was happy and content and determined to do what he was interested in.
He didn’t care about the stares or the fact he only ate pizza every single night for dinner. He did however care for me. His cuddles and snuggles into me when he was scared, his laughter when I tickled his belly, and his smile when I threw him in the air. He wasn’t worried for the future, he was happy in the present.
I had to change myself, and not keep looking for ways to change my son.
I had to change myself, and not keep looking for ways to change my son.
I started to focus on what he wanted, what that day held, and how we could overcome the challenges which were present in the present.
As soon as I changed my perspective, and as soon as I stopped and watched my little boy, I saw his quirks, his strengths, his warmth and personality. We worked on strategies, which improved his engagement, and over time finally lead to speach. We changed his school to one that met his needs, something I worried about constantly before, where I had worried about what others would think, what others would say.
I turned away from the stares, the comments, the harshness, and looked through the eyes of my child.
I stopped worrying.
I started to wonder.
Through all the changes and development, my boy started to smash down the barriers. He started to meet milestones. Not the milestones in the published parenting books, but the milestones we had set for ourselves as a family. The ability to leave the house, the understanding of where we were going, the engagement between ourselves and our children. My son started to prove the world wrong.
I stopped, and I wondered.
I wondered what the future now held for my son. It was not a worry, it was a wonder of what other successes were on the horizon. What new experiences we would create and enjoy.
It was not a worry, it was a wonder.
Our lives were different now. But that didn’t mean they were worse. Just different.
The tears fall less frequently now, there are more smiles and moments of laughter, as I wonder what tomorrow has in store.
Change your perspective. Don’t worry about a future you know nothing about. Focus on the present and instead of worrying you can start to wonder.
“You get the coats, boots and hats ready, and I will do the toilet trips” I said. It was the standard pre-walk preparation we executed every week.
As we all bustled in the small cramped hallway at the bottom of the stairs, with coats consuming arms and hats bobbing up and down as the pompoms got excited for their daily trip out, one little boy was missing.
I looked around the doorway to see my son, Rhys sitting by the window with his book in his hand. “Rhys, walk then swings” I said as I walked up to him.
“NO!” he screamed back at me, and kicked out, turning into a stiff board that would not be moved.
I immediately pulled out my phone from my back jean pocket, knowing I had to move quickly before anything escalated to a point of no return. I searched frantically through my picture app for what I wanted, but my heart was beating in my stomach. I hoped I had the right images. Images I hadn’t used in years, for a routine we had got so use to executing.
Rhys’ screams and frustration got louder as I finally found a picture of him walking through the forest and a picture of the park. I pulled the two pictures into a sequence, and held them up to him. “Walk then swings” I said, trying to keep calm and consistent with my tone, while the stress built up in my gut.
Rhys reluctantly acknowledged me and I was able to convince him out of the front room towards the front door. The rest of the family stood congregated and patiently waiting for us as I bent down to place each one of Rhys’ wellies on his feet. I was so nervous this would not go to plan, so I moved carefully and gently to try and ensure we were able to move forward and get out for the weekly walk. I held out Rhys’ coat, and he pushed each of his arms into their slots, leaving me to pull the zip up over his body.
I took a deep breath, and placed my hand on the front door, opening it and feeling the cold winter air rush past my bare face. Things happened in slowmotion at first and then it was as if someone had pushed the fastforward on our lives.
Rhys’ hand lifted upwards, grabbed the zip of his coat and pulled. His arms were out of the sleeves within seconds and he ran to the back room kicking out his feet in an attempt to eject the boots from his limbs.
I felt deflated. I felt like we had gone back in time by three years, to a time when this was a daily occurrence. A time when we couldn’t go anywhere. A time when I couldn’t cope.
“Do you want to stay here, and I will take these two?” said Justin, nodding to Jessie and Ewan who stood suited and booted on either side of him.
“Yes, you go” I said.
As half my family left and the door closed behind them, I felt my heart rip apart. We were divided once again, just like we had been years ago when we couldn’t take Rhys anywhere. Where places and activities were too much to cope with.
I walked into the back room. Rhys was sitting on the single sofa, his wellies still on his feet unable to be removed by his small hands. I knelt down by him and pulled each welly from its foot.
“Rhys, swings?” I asked, in hope that I could at least get him out the house, even if it still meant no family walk and just a trip to the playground.
Rhys just sat staring at me.
I grabbed my phone again and quickly googled ‘swings’, and held up a picture of a child on a swing. The image filled the screen of my phone.
No response.
I left the room and found his trainers. Returning to the room, I held up the picture on my phone once again. “Rhys, swings?” I said again, and then held up his trainers. My hope was fading so quickly, and I just wanted to collapse down in tears. Our life was so challenging, where a simple walk was just an impossible task.
But I held strong. I was desperate to try and find a way.
As I continued to show him the swing picture and meet him at his eye level, he suddenly let me slowly place each trainer on his foot, and with a “one, two, three” I lifted him to him to his feet.
“Swings, Rhys?” I asked again. “Swings!” suddenly came a response.
I carefully put on his coat, my stomach in knots as the stress bringing a taste of sick into my throat,but we somehow managed to walk out the front door. At the end of the driveway, I went to turn left to take us up to the park, but Rhys stopped. “This way!” he said, pulling my hand to the right.
“Ok” I replied and let him take the lead, while I dug into my coat for my phone.
“Justin, wait for us, we are coming!” I shouted as my husband answered my call.
Five minutes later we had caught up with the rest of our family, and I collapsed into my husband’s arms, my body drained of energy, the stress and exertion of effort to get to where we were.
“I don’t know how you did it, but well done” he said, as he slowly wiped something out of his eye. We stood in the field for a few minutes as I got some of my strength back, then we walked forward. We walked onwards as a family, together again.
“I can’t go back to where we were” I said, “we have worked so hard at this” “We definitely have” my husband responded ” We definitely have.”
As we walked forward, I watched Rhys run ahead. He must have felt as drained as me, but I knew a walk and some fresh air was what we all needed. It had been challenging, but our family walk was all we had at the moment. The only thing to keep us moving forward.
An Autism Blog creating awareness one story at a time
