Tag Archives: asd

Autism Choices. The Way to Communication.

Choices.

At the age of two, we had our first speech and language appointment. It was pretty noneventful, but the speech therapist did give us one piece of homework to take away and implement. It was something we would use for many years and still use today. It was to encourage engagement, the first step to communication.

At the time Rhys would take us by the hand to the item he wanted. It was his ultimate way of communicating his needs. This would be the fridge for an apple, the kitchen cupboard for a rice cake, or the telly for his show. Most things were within his reach, so he would often just help himself, gaining his independence just like others his age.

But he didn’t talk. Not a sound. Not a mama or dada, or grunt or squeak. His arm-guiding method met his needs, with no requirement in his world to do anything else. The choices were going to change that, and we set about implementing them straight away.

The instructions were to put everything Rhys asked for, or currently obtained himself, out of his reach. So we moved the crackers, rice cakes and breadsticks into a top cupboard. The apples and oranges were already in the fridge fruit drawer and safely out of his grasp. We became a house with everything in the wrong place. Like when you go to your granny’s and while making a cup of tea, you struggle to find the cake knife, and eventually find it in the top cupboard wedged between the tub of flour and a hairdryer. We were now an old lady’s house with rice cakes alongside the plates and bowls, and raisons amongst the teacups.

We always had this instinctive sense of what Rhys wanted. There was only a handful of food items he ate and other activities were limited. This change was to get interaction between us and Rhys, and encourage him to ask for what he wanted rather than taking us to it.

As soon as we had rearranged the kitchen, we put the strategy into action. After being dragged to the fridge, I bent down to his eye level, fully aware of his non-verbal request for an apple. “Rhys, apple or orange” I said, gesturing each choice with each empty hand. He stood staring passed me towards the wall, no engagement, just the view in his mind that we were at the fridge, the location of his request.

I crouched there for ages that day, down at Rhys’ eye level, my calves burning, my determination strong. I was not waiting for him to perform a miracle, a verbal request for an apple, I was just waiting for a flicker of engagement. There was no magic formula, just time and hard work. It was hard that day, and every day after that. But it happened and was the start of a journey we had embarked on. That day I got a split second of eye contact, and that was all I needed to reward him with his request, an apple.

Over the years, I persevered. The response to choices increased from split seconds of eye flickers to second long moments of engagement, and slowly over time a sound was emitted that slowly formed the letter ‘a’ and later ‘apple’.

As soon as we got that first word we added more words to his request, prompting Rhys each time, and flooding him with praise as we handed over his requested item. Four years later, Rhys will now request with the words “I want orange please Mummy”, although prompting is often still required.

But life has a way of noticing when you have succeeded at a challenge, found a method that works. I walked into the kitchen, today to find my little boy now able to reach those high out of reach places from years ago. He independently opened the fridge, took out an orange, and turned to me with a smile on his face. His non-verbal communication clearly stating “I got it myself – screw you and your choices” 🙂

But I know that cheeky gesture is a form of communication we never had before. He was proud to ‘help himself’, and we needed to reach this point sometime, the time where he is growing up and wanting to do things on his own.

Our little independant boy.

🍏🍎🍊🍎🍏🍊🍎🍏

You can learn all about how to use choices from our strategies.

Autism: The Childcare Struggle

There were two points I made to the BBC while I sat behind the camera in my dinning room, as my son ran back and forth, avoiding a collision with the Golden Retriever!

Read the BBC article here.

The first point was obvious, the need for more funding, to ensure childcare provision for our children.

But the second was just as vital.

It was to provide existing childcare the support and education needed around special needs care.

My points were all in support of a cross-party Senedd committee report which said that 38% of councils did not have enough childcare for disabled children anywhere in their area.

I have received funding in the past to put Rhys in wraparound care or holiday clubs, but it has not worked. Not because the money wasn’t available, I was lucky and fought and got a nice sum to pay a wage for the entire summer. But the educated staff, the structure, the knowledge and experience wasn’t there.

We don’t need separate childcare facilities. We need to build on the facilities we have got. We have to adapt the way current childcare is run and make it available for all abilities.

For that we need the funding, but most importantly our childcare needs the support and education to know how they can help.

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.

Is This Our Forever?

Guest Post by Ellie Whetzel

A good friend recently asked me what kinds of things Leo was interested in these days? 

“Toy Story, like always,” I responded, chuckling at the thought of how often I’d responded similarly over the years.

For as long as I can remember, Leo has been transfixed by the popular series of films; his love for Sheriff Woody, Buzz, Andy, and the rest of the Pixar gang, have stood the test of time, resulting in a most impressive collection of Toy Story merchandise; from figurines, to plush dolls, books, t-shirts, and the like…But more importantly, they have provided a sense of connection and belonging burrowed within a world of characters, and friends that have bestowed comfort and companionship onto my boy for years…

“Cool Sheriff Woody doll,” I heard someone remark, as I turned to find two young men appearing to be in their mid to late teens, walking past us in the grocery aisle. I quickly scanned their expressions, as best I could with half their faces covered, searching for any signs of malintent, while my boy vocalized loudly, squealing as he twirled his Woody doll around furiously with excitement. 

As my gaze met one of the young men’s, he nodded knowingly, 
“Sheriff Woody is my favourite.” He commented, genuine kindness reflected in his tone as they continued on their way.

I looked over at my sweet boy, carrying his pal Woody securely within his grasp, just as he has since he was a young child.

I marvelled at how much my boy has grown since the day I bought him his first (of many) Sheriff Woody dolls; that moment etched in my memory, always. The joy radiating from his beautiful smile some 8 years ago remains woven in my now 10 year-old big boy’s being, personified by the clickity clack of Woody’s boots, each morning upon Leo waking.

Andy and I had a conversation a few years back about the future for Leo. At the time, Leo was primarily non-verbal, with a myriad of challenges that stifled any hopes that he might one day be able to live independently as an adult…Yet, as my amazing husband pointed  out then and continues to today, the future isn’t set in stone for any of us; Leo included, and we simply don’t know where Leo’s journey will take him years from now. 

It certainly isn’t up to us to write his story..

And while we still operate in many ways with this mindset, there comes a point where hope, and reality intertwine-

Leo’s Speech/Language delays remain immense. And while there is so much hope and pride in what he has accomplished, the reality is that along with Autism, progress is often paired with new and unexpected challenges, creating an ever-present roller coaster of thoughts and emotions…

Hope and pride is never extinguished, yet the years trickle by, and I find myself facing the stark realisation that in 8 years time, my sweet Leo will enter adulthood. 

My mind wanders to the reality of Guardianship once he turns 18…of Special Needs trusts, and all that looms in regards to caring for an adult with disabilities-

I worry about services- of how scarce they are once children like Leo “age out.” He will likely be able to attend school until he is 21 or 22. And then what? The options are limited and the worries associated  with how I will help my boy as he grows into a man, daunting.

8 years…

I have time, I suppose.

Yet, the memories of my boy holding his very first Sheriff Woody doll 8 years ago, are as vivid and clear as if they occurred just yesterday…

And I think once again of my friend’s question…

Will my answer remain the same 5 years from now? 10?

Will Leo still insist on taking his pal, Woody along with him on outings when he’s grown…and will there come a time in the not too distant future when thoughtful glances will turn to judgement, from those who don’t understand?

My 4 pound 9 ounce newborn, who now stands at eye level with him Mommy, holding out his hands and requesting “up” as he did from the time he could stand-

Despite the fact that to my dismay, I can no longer physically lift my boy, I’ll always be there to wrap my arms around him…even as he towers over me, I’ll be there.

To love and protect him…To advocate and teach the world about the beauty and wonder that is my boy.

If this is our forever, what a beautiful forever it will be.

About the Author: Ellie Whetzel is a wife, Mom, and blogger who writes about the ups, the downs, and everything in between of life with her extraordinary son, Leo, who is on the Autism Spectrum.

You can follow their journey on FaceBook at https://www.facebook.com/mylifewithleo/

TOTS100 - UK Parent Blogs
TOTS100

We will wait for the light, but until then, I will sit in the dark with you!

The house stank of bleach. A two hour marathon of scrubbing and cleaning. No clutter remained, each piece of rubbish discarded, with papers filed and books returned to their shelves.

But it still wasn’t right.

It was like one of those makeover shows. Looking around my house I could still only see the before shot, the one through the grey filter, no sparkles or brightness surrounded me. I felt defeated, the need to find some control in my life when everything was falling apart, but my world still looked physically dull and uninviting.

A cry came from the other room and with a deep breath, I pushed my feelings down into my stomach, I wiped the tears from my face, smiled a fake smile and walked through to my three year old son who had awoken from a nap on the couch. His cry was the only sound he could make, the only method of asking for attention. There were no words or babbles, unlike my friends children of the same age.

He was non-verbal with a diagnosis of Autism Spectrum Disorder. A diagnosis we had received a few months earlier.

But it was not the diagnosis that had changed my current mental state, it was the lead up to it. It was the constant changes in our lives. The change from the lives we thought we would have, to a life that was spiralling out of control. A new path that we didn’t have the map to. A new set of rules we didn’t know how to follow.

Every day I woke with a fresh positive perspective, with a view that each new day would be better, but it never materialised. Each day grew darker, with feelings and emotions bottled up. The need to not lose strengh or show weakness in a world of comparison at the school gates.

I felt so alone.

No one understood.

My friends led different lives, where their biggest worries were of lost jumpers and water bottles, or what day was PE. Had their child got the right pencil case or whose playdate was next?

My worries were greater. The same things which were routine to everyone else were impossible to me.

I worried about how to leave the house without my son having a meltdown. I worried about whether he would ever speak, whether he would ever understand me, whether he would be able to live an independent life.

I couldnt walk into a shop, an activity centre or a church hall, because they were unfamiliar to my son. I couldn’t bend down to his level and explain, or talk him through it – words were meaningless. They were useless to a boy who didn’t know their meaning. We were foreigners from different worlds.

So as I sat next to him, I cried. The feelings I pushed down had run out of space to hide. My body ached with pain from the overload of emotion, where my world was an entrapment that closed in on me.

The cries of excited children ran past my window, calling after their friends, and it made me feel worse. My son silent next to me, oblivious to what I was feeling.

I felt like I had fallen from a place of control and shattered into a million pieces. But somehow I had held it all together whenever in public. No one who understood, and I had not allowed them in to understand.

As I cried alone in my front room, the front door opened. My husband stood in the doorway and without words approached me and took me in his arms. He didn’t tell me it would be alright. He didn’t tell me we would get through it. All those words had been said before and were being said without even saying them.

But he said he was there with me. We were in it together, and he would sit in the dark with me. And we would make it.

And we have.

We have come out that grey. The world took a while to get its glimmer back. It took time for us to work out that path and find the way.

Parenting the special needs way is hard. I know that because I do it, and will continue to do it.

It starts out dark, but it does get brighter, and as longs as you are willing to invite others in, they will sit in the dark with you.

You don’t need to sit in that dark alone.
There are many of us here to do that with you.

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TOTS100 - UK Parent Blogs
TOTS100