All posts by maggs.hay

Autism Life

Autism Diagnosis – Now What? Top 5 Things to Consider

For every parent who has gone on the journey with their child to obtain an autism diagnosis, for every parent who has spent hours writing and reading reports, fighting with authorities and professionals, jumping from one appointment to another, and collating folders of evidence, getting a diagnosis for your child is not easy, but once you are handed the piece of paper, we expect it to open doors and give us guidance on moving forward. 
Often it doesn’t. Often parents are left more lost and confused about where to turn, left with a piece of paper and no roadmap, no direction.
Here are five things every parent needs to know to move forward with their child’s autism diagnosis and continue on the path to supporting their child in being the best they can be.

1. Get a Special Needs Health Visitor

Every child is assigned a Health Visitor a few weeks after birth, but this support is only provided until the child starts school. Our children who need more support, have the opportunity to be assigned a special needs health visitor who they will have until the age of 12. Special Needs Health Visitors are able to share information about services, benefits, local support groups, and most importantly initiate any further referrals for your child’s needs.

2. Get your child an EHCP

If your child needs additional support due to their diagnosis, it is vital you get this formally documented. An Education Health and Care Plan (EHCP) details your child’s requirements and the support they are to be provided. It is a legally binding document that will define the school which best meets their needs, allowing you to get the best education for your child. Schools can initiate an EHCP, alternatively speak to your Health Visitor, GP, or Pediatrician.

3. Apply for Benefits

There are a range of benefits for your child, some are financial whereas others are available to make your child’s life easier. One of the key benefits is DLA (disability living allowance), it is not means-tested and will not only provide a financial payment, but the benefit also provides a stepping stone to open further doors to support. To get a sample of the benefits available to children with an autism diagnosis click here.

4. Get on an Autism Parenting Course

Lonely is a word that every Special Needs parent has conveyed. The feeling of being the only one trying to parent in a world that is so new to you. The first task is to get yourself educated. Start to understand how you can help your child and the strategies and techniques to allow them to cope in this scary world. The National Autistic Society runs a parenting course called The Early Bird and is available across many locations in the UK. If places are not available, there are many local courses that will teach you what autism is and how to engage and interact with your child.


Learning is vital, but the second benefit of a course is the people you will meet. You will be able to find support from other parents going through the same journey as you. Nothing is better than someone else who understands.

5. Social Worker

Lastly, every parent needs a break, but this is even more important when you have a child who demands your constant support.
Support workers are able to arrange respite for Special Needs Parents. Speak to your GP or Health Visitor about getting assigned a Support Worker. Getting time to yourself, so that you can recharge, is vital to ensure you can be the best for your child.

Autism Strategy

Getting your Child to Talk: 8 Alterative Autism Communication Strategies

So your child is not talking. They have missed saying their first word, the milestone of speech, or their ability to understand language. Your Google search will come up with many strategies and methods of encouraging engagement, prompting speech and communicating differently with your child, but there are many other ways you can communicate and engage, from using everyday items around your house to some of the latest technology.

There are strategies you will find and learn from speech therapists which are fantastic in developing communication skills, helping your child to understand everyday requests and helping them to tell you what they want.

I am a strong advocate of these methods. They are proven to work and I have seen the results with my own son. If you want more details you can read of these methods here, where I explain step by step in how to implement them and some real life examples.

But what I found when learning about communication and the tried and tested methods by professionals, is that you have the opportunity to adapt and tweet these methods to your environment. Additionally you can also introduce technological developments into the strategies as we move into a more digital age.

Times change. Our world evolves. Things modernise and although the fundamental strategies will always remain, we can adapt them, mold them and use them in different ways.

Six of these strategic adaptions are detailed below.

Photos

A lot of visual communication aids make use of universal symbols. But there is no rule that you have to use these. The objective is to communicate, and this can be easily done with taking photos of items you use most often or your child, for example doing activities or visiting places.

Photos are great, because with today’s technology we all have a camera in our back pockets with the ability to take the photos wherever we go.

When words are not an option for communication due to barriers to understanding and language processing, a photo tells a thousand words.

Leaflets

Leaflets are a great resource and worth collecting when you see them, or even when you are at a location to store for future.

It is dependent on the individual, but leaflets can consume a lot of space and aren’t freely available when you need them at that split second moment.

However they are a great communication options to add to the collection.

Books

An adaption of the Social stories strategy, books are an amazing tool for communication. A lot of stories for children are based around a specific scenario, for example a trip to the dentist, or the supermarket, or when granny came to stay.

Whether the story is centered around our well known Peppa Pig family or a little girl’s first day a school, they all come with a message and a sequence of events.

If a new outing or visit is planned in for the future, reading a book about the experience is a great way to introduce familiarity about the event and a reference point to relate back to when the time arrives.

Even consider taking the book with you to refer back to, is always a good shout.

Cartoons

Our children love a bit of telly, and although we may think the majority is a load of codswallop and cringe as we hear the theme tune emanating through our television speakers for the hundredth time, there is some value in children’s television episodes.

Not all children’s cartoons follow the model but the majority do. They center around a story or theme and message that is being portrayed.

In a familiar fashion to books, episodes of a bunch of paw patrol pups rushing into the fire station or the poor kid from Fireman Sam getting into a pickle once again, we can use the stories to highlight a new event or activity we have planned.

On our last visit to the beach son, we acted out a Peppa Pig episode about Georges sandcastles, which encouraged engagement, imaginative play and family interaction.

Video

There is nothing better than the video of an activity, attraction or location. If YouTube is not giving you the options you need, search videos by Google and watch a visit to the dentist or local attraction.

There is also nothing more powerful than your child watching themselves on video from a previous visit. Record outings and save them in easy-to-find folders on your phone or PC. Then the next time, instead of using words to communicate where you are planning to visit, you can communicate with the aid of a video illustrating your previous experience.

YouTube

YouTube is an amazing catalogue of resources. Take your pick and you are guarenteed to find a video that will be of benefit to your situation.

A few years ago I was determined to introduce a balance bike to my son’s activities, with the hope that a zoom through the park would be on the cards.

I did everything to demonstrate the mechanism of the push vehicle only to be met with blank stares and a pair of painful quad muscles from attempting a ride on a bike too small for my physical build.

YouTube saved us when I found a video of a child pushing himself around a skate park on a balance bike.

It wasn’t a fancy video, just a ten minute clip of a child riding. But with the ability to repeat the clip, I played it on our television, over and over again, allowing my son to become familiar with the activity and gain knowledge of what the two wheeled piece of apparatus in the corner could be used for.

Familiarity of a new activity or experience is always best shown multiple times to gain awareness and comfort. The foundations of what is expected take away the fear when the real life item is presented.

Webcams

Thank goodness for technology and the virtual power of the Internet.

Previously I would spend hours finding pictures of places and items, then printing and laminating them to allow a method of communication for my son. But there was a great tool that gave him the real life experience from the comfort of his home.

Webcams of beaches, local attractions and public venues are great to allow our children to see where you are going and what it actually looks like. The video gives added value compared to a flat two dimensional picture.

Use Google to search the location you plan to visit plus the word “webcam” to see if you can get a live image stream.

Virtual Reality

Often technology and fancy geeky gadgets can put those less techy folk off, but virtual reality is a great tool and with today’s advances it is easily available for anyone to try at a very low cost.

There are many apps that are VR enabled and allow a virtual experience of the outside world from the comfort of your own home.

However, as a communication mechanism, google maps are one of the best tools you can use to communicate where you are going and give a real life experience of the location without actually going there.

With the use of your smart phone, the only additional piece of kit you will need is a VR headset. If you are not sure this is something you want to venture into or just want to have a go without breaking the bank, the purchase of Google Cardboard will get you into the VR world for only a few pounds.

Google cardboard will give you an insight into the virtual world, but if you want to get a more durable headset, there are many on the market, but I would recommend Samsung gear as a good headset to provide you with all the functionality you would need.

For more information on the use of VR with Google click here.

If you are new to finding ways to communicate with your child who is not yet speaking, have a look at the different strategies here.

Also check out all our posts via the different social media channels below.

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Autism Shopping

Autism, Shopping, Obsessions and Chocolate Cake!

When your son shouts “Shopping!” at 6:50am, you forget about a lie in, pull on yesterday’s joggers, and get your son dressed. You react to a verbal request with no hesitation. You do it because you have spent years waiting for your son to talk. Years crouching down, holding up picture sequence cards and trying to work out what your son wants. Years praying to hear his voice, the tone, the amplification, the bit of his personality that you have waited to get to know.

As you turn into the carpark and watch his face light up at the Morrison’s sign, you feel a lump in your throat. You feel emotional, because you remember the blank stare he always had across his face, just looking at the back of the car seat in front of him. No pointing at the trees flying past, or screams in excitement at the sun as it followed our journey from the sky.

As you step out the car and take his hand, you well up when you ask him “Rhys, carry bag?” and he takes the shopping bag in his hand. Your son who could not follow any instruction. Where language was just a mash of sounds that he could not process, meaning calm words in scary situations had no effect, or words of warning were as good as not being heard. But he can now understand.

You feel like you have hit the jackpot, when you walk hand in hand into the shop, the shopping bag held in his hand. Yes, just calmly walk into a shop! A place where surfaces beam bright light, strange beeps and pings hit the ears and vibrations of trolley wheels penetrate the body with pain. An environment where you have sat on the floor so many times. Your son in an uncontrollable meltdown, kicking and screaming in an environment he cannot tolerate. But today you just walk!

“What do you want?” you ask, crouching down to your son’s level, knowing your stuff and how to talk to your son, the years of education you have taught yourself and the snipits of information you have grasped from the limited professional help you have been provided. “Chocolate cake” he says with no hesitation, but waits for your lead. An exchange of conversation you never imagined would ever happen. A moment of exchange between both of you, where you have reached a stage of understanding. The pain of constant strategy, baby steps and the goals it results in, have all been worth it.

As you walk into the bakery isle, you son points to a cake with no hesitation. With no delay of deciding what to choose. You don’t challenge it, you take the cake he has pointed to, the double tier chocolate cake for twelve, when you cleary know there are only five in your family. It is because of his action. The action you spent months and months working on by physically holding out his arm, placing his fingers in a fist and letting his index finger point at objects.

You then let him carry his cake to the self serve till and push the boundary like you have done so many times before. You pray you are not going to push your son too far, too far that things will fall apart and put you back on the floor in a meltdown situation. But without trying you will never move forward, and you know if it fails, you will learn how to adapt for next time. So you instruct your son to scan his cake. You show him the bar code, and let him wait for the beep. You then direct his finger to the touch screen and you both press “checkout” together, and wait for the last beep as you help him touch the reader with your card. Then you punch the air in triumph, because this simple goal for others, is something you dreamed would never be possible for your boy.

As you walk out the shop you loose control of your emotions when your son, holding his cake, in amplified tone, shouts “Chocolate cake” at the security guard. It is only 07:30am, and that has made that guy’s day.

So this morning we had a sugar breakfast. But today was a day where “No” was not an option!

To all those parents who are unable to take their children anywhere. To the parents who sit on the ground trying to calm down their kicking and screaming child. To those parents who feel they are clueless and lost and drowning.

You are not alone.

Keep trying.

Keep hope.

Keep your head up high.

It may not feel like it now, but you are doing an amazing job. You are helping your children find their way. You are creating a foundation you and your child can build on together.

You will look back at your past self, and never imagine reaching the place you are now.

And who knows what the future has in store!

For us, it will be a chocolate cake breakfast every Saturday! Because I want to start every day like we started off today! And I hope you can too!

Autism Strategy

Autism Communication only needs three words!

He ran.

The cars flew down to his left, but I stayed calm until the point I felt he had gone far enough.

“Rhys, stop!” I shouted. Then I watched his feet continue to motion forwards a few paces before he stopped, and turned to face me.

When Rhys was three years old, preverbal and unable to process any language, we had the objective for him to talk, to understand and to communicate. But those things take time, and they are still a work in process today.

Knowing we were in it for the long game, we continued with the speech therapist’s guidance and methods. But we did something else too.

I was worried about safety. I wanted engagement. I needed calm transition.

So we focused on three words.

Stop. Look. Finished.

I wanted to build up my son’s speech and understanding. I wanted to be able to communicate with him. But those things take time, and I wanted to focus on key areas that we could make a difference now.

So we focused on the three words.

When Rhys ran, I would run after him. I would stop him with my arms and hold him still. Crouching down to his level, I would say “Stop!” Just the one word, clearly associated with the action.

When I saw a duck, a cow, a car, a tree, I would crouch down again, take his hand and use it to point to the object. “Look!” I would say. Over time I would add the name of the object. But the word “look” started to make him notice objects and his surroundings.

When activities were to end, I would use my paper traffic lights, and announce last go and “Finished”. It was a word I started to assign to the end of activities, the end of food requests and a statement of ‘no more’.

Three words allowed me to introduce safety, engagement and transition. I was happy to wait for more words, but the three others could let us progress and live our lives.

Always focus on one goal at a time. The communication will come. It is amazing what we were able to achieve with just three words.

Three words we used constantly over and over and over again. Repetition, repetition, repetition. Until my son associated them with an action.

What three words will you use?

Guest Post

To My Beautiful Boy

Guest Post by Lauren Morfett

To my beautiful boy, 

I hope you realise as you grow up how special you are, to us and to everyone you meet. Know that your little footprints will make a massive impact on this world. Know that your smile adds colour into my grey days and that your laugh is my favourite sound in the whole wide world.

You make us so proud in everything you do, life can be really hard for you but you never give up and that amazes me. I love watching you as you go about your day, you see beauty in everything you touch, you take notice of the little things that I am often too busy too see most of the time. I love the way you watch the way the trees move in the wind with pure amazement on your face and the way you spin around really fast but never get dizzy. You remind me to just take a minute and stop what I am doing and just breathe in the fresh air and really look at the good in the world.

When you sing it makes my heart melt because your voice is something we waited so long to hear, it’s beautiful and I could listen to it all day.

These last four years you have come so far, you have learned so many new skills and you have opened up your world and allowed us be a part of it, we are so thankful of that. Always know you can do anything you want to, the sky is your limit, I have no doubt in my mind you will do great things. I hope you know that nothing you do will ever go unnoticed, we will always celebrate every single thing you do because you are an absolute star to us Isaac and don’t ever forget it.

You have been lucky enough to not have any understanding of the painful things that happen around us,  I am grateful for the innocence you will keep because of that. You have no concept of fear and whilst that can be scary to us it also means you will never be held back by it, fear won’t control you like it does so many others and that’s kind of amazing to think about.

Always know that being a little different does not mean you are less than anyone else, don’t let other people defy who you want to be. Autism is a big part of you but that doesn’t mean that is all you are, you are so much more than that, to us you are just Isaac, our perfect four year old little boy who loves the outside and who has known the alphabet since he was one years old.

The struggles you face can leave you feeling lost but know that mummy will always find you, no matter what, I will always be there to pick you up and bring you back home every single time. Know that on days like that mummy tries her best but sometimes that isn’t good enough, it just means tomorrow I will try even harder for you.

When you are sad it breaks my heart, when you cry because your emotions are bigger than you at the end of the night when your asleep I cry too, for the things as a mother I can’t make better for you, that kills me the most. Know that even if I can’t make it easier for you I will always hold you tight and stroke your hair like I always do until your beautiful smile returns to your perfect face.

Know that we will always be there fighting your corner, we will make sure you get the best of everything this world has to offer. We will be your voice when you need us to be, we will make sure we shout when you are not being heard. We will always fight for you to have the same opportunities as everyone else because you deserve that, it is your right.

We will always be thankful you chose us to be your family, you changed our lives in the best possible way. You gave us a purpose, I can’t remember what life was like before you, it’s like you have always been a part of us. I am so excited to see where you end up, never change baby, your absolutely perfect. I hope Know that we love you and your brother so much more than you will ever know ❤️
All my love foreverMummaX

Written by Lauren Morfett: Wife, blogger and Mummy to two little boys aged 4 and 11 months in the UK. Learning from my beautiful son Isaac every single day ❤️

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