Blue Parking Badge for Autistic Children-Part 2

Just over two years ago, I wrote one of my most popular Blog posts. I was raising awareness about the new legislation that autistic people could apply for a blue parking badge. In theory, it all sounded very positive. However, two years on, how successful has the scheme been? In this second post on the topic, I reflect on my own personal experience applying for a blue badge for my child.

The Application Process

The initial application process was relatively easy. Everything is online and the form allows you to create save points so that you can take a break and return without having to complete the whole thing in one go.

The hardest part about filling in the online application is submitting the relevant documentation. As I mentioned in the previous blogpost, not all autistic people will qualify for a blue badge. However, if autism causes a child considerable distress when travelling or they could pose a danger to others, then it’s definitely worth applying for a blue badge. To this end, the documentation supplied with the application must reflect the criteria. It’s important to keep hold of any doctor’s letters, psychological reports and other evidence to upload to the application. These MUST relate to the criteria in some way. It’s no use just sending a copy of a letter with an autism diagnosis on it. The letter must specifically state how the child has difficulty that would require special provision to be made when travelling. For example, if your child has a history of running away or a poor sense of danger, this would be excellent evidence to submit with your form.

Our Personal Experience Applying for a Blue Badge

I spent a while filling the form in and uploaded as much evidence as I could, including parts of the EHCP, paediatrician letters and CAMHS reports. I thought it was enough. However, the next stage made me realise that any application for a blue badge on the grounds of autism would require a certain amount of hoop-jumping.

A few weeks after filling in the online form, I received a paper form in the post saying that they needed more specific evidence. Ah, the catch. I had provided excellent evidence, but they wanted more, and they were going to make it as difficult for me as possible.

A professional would need to fill in the form. It was geared towards health professionals but school staff can fill it in too if they know the child. The form goes into more detail about how the child’s condition affects them and focuses on the criteria such as intense psychological distress when travelling and danger to others. The person filling in the form needs to provide proof that the child fits the criteria.

Finding Someone to Complete the Blue Badge Form

Unfortunately, our application coincided with the outbreak of COVID. Schools shut down and all medical appointments were online or telephone only. There was no opportunity to physically give the form to anyone to fill in. In addition, those I did ask were unable to help. For example, our CAMHS psychologist was my first port of call. She claimed to be happy to fill in the form and would have been the perfect person to help. However, her supervisor advised her that she would be unable to fill it in as she only worked with my son in blocks rather than long term. She handed the form back and apologised.

The paedeatrics department was equally unhelpful. Our paediatrician was on maternity leave and was replaced with a locum. She didn’t know my son well enough to fill in the form. I put the form on the notice board at home and waited.

Months passed and school opened again. Thankfully, my son’s teacher was willing to fill the form in. He wrote a detailed description of my son’s anxiety issues and related everything to the relevant criteria. It was a masterpiece! However, all of the delays meant that I sent the completed form back almost a year after they had initially sent it.

More Obstacles

I had concerns about sending the form in so late, but there was no deadline given in the letter. I thought it would be best to call them up just in case. Tentatively, I called the blue badge department and was put on hold. After half an hour I gave up. I decided to send the form anyway and hope for the best.

Unsurprisingly, my claim was refused. They told me I should have returned the form within 6 months and that now I’d have to start a new application. At this point I actually considered giving up. A blue badge seemed so far out of reach. Somehow, that seemed a huge waste. I gathered my mental strength, opened up the online form and proceeded to go through the whole process again, painstakingly uploading all of the evidence from before and adding the new form that the teacher had filled in.

Finally, Success!

I have to admit, I wasn’t hopeful. So imagine my shock when the application was approved! We now have a blue badge. It seems to be a victory, not just for us, but for other families with autistic children too.

We are careful to use the badge in a considerate way. We don’t abuse it. In fact, most of the time we don’t need to use it at all and would prefer to keep disabled spaces clear for people with greater need. However, there are times when the badge is going to be incredibly useful, especially when visiting places with big car parks, like the NEC, or theme parks. The walk from these car parks to the attraction itself can be 15-20 minutes, or via shuttle bus, which can cause huge distress to my son, who has no sense of danger and has bolted on large car parks with no regard for his own safety or that of others. Hopefully, that will become less frequent now we have our blue badge.

To conclude, I’d definitely recommend applying for a blue badge if your child struggles with anxiety or meltdowns related to car travel. The process is not easy, but the results can be well worth it. My advice is to find lots of corroborating evidence and to get a supportive professional on board that will help you. It seems ironic that the things that are supposed to make out lives easier, are so hard to obtain. If you are currently going through the blue badge process, I wish you every success. Together, we can be the catalyst for policy change.

Negative Flashbacks and Autism

Autistic people can have powerful memories. This can result in intense flashbacks, which can be painful and embarrassing. In this post I am going to discuss the phenomena of negative flashbacks and their effects.

Autism and Memory

Autistic people can experience memories in a very different way to neurotypicals. As a spectrum condition, experience of memory can vary greatly between individuals. Autobiographical memories can be particularly intense for one autistic person, whereas another may have difficulty remembering the details of events where they were present. They may not be able to accurately picture themselves in a scenario that they participated in.

There are many different kinds of memory. These include declarative, sensory, episodic and working memory types. Autism can affect how these memories are experienced. As an extreme example, an autistic savant may be able to recall tiny details of an artwork or play a piece of complex music from memory. Memory and autism is a huge topic, which hopefully I can return to in more detail in later blogs. However, this post is dedicated to the specific topic of negative flashbacks.

Negative Flashbacks

A negative flashback is when an autistic person has a very strong memory of something that happened in the past. This will usually be an embarrassing incident of a social nature, although it could be a distressing event, like bullying. Unlike a normal memory, this type of memory is extremely intense, almost transporting the person back to the time and place over and over again. They feel the emotions and pain over and over, which is extremely unsettling and frightening.

A negative flashback can be combined with rumination. This is when a person plays a scene over and over again in a loop. It is like a stuck record on replay. The scenario replays endlessly in the head, causing great distress. This rumination, combined with the intensity of the emotions involved, can easily lead to a meltdown.

Supporting Someone Through a Negative Flashback

It is important to take the individual into consideration when supporting them through a flashback episode. Firstly it is important to take things seriously. An episode like this can cause intense distress for the sufferer and should not be taken lightly. It is no good telling them to “snap out of it,” as it really is not that simple. Emotional episodes such as this can actually cause physical pain, like chest or stomach pains. Show empathy and kindness. Show that you understand and do not belittle their suffering.

Depending on the individual, distraction can be a good technique. If possible try and talk to the person about different things to draw the focus away from the painful memory. Likewise, grounding and mindfulness techniques can help to ground the person in the here and now, rather then then getting lost in a painful memory. Apps like Clear Fear can help with this.

It may also help to try to address the memory when they are in a calmer state. By talking about it in a calm way, they may be able to minimise some of the more distressing aspects of the memory and see it for what it really is. It is important for them to know that a memory is just a memory and cannot hurt them if they do not give it the power to do so. This may take time.

Negative Flashbacks: More Information

For further information and a first-hand experience of negative flashbacks from an autistic individual, I recommend reading Dan Coulter’s blog. Dan explains how he would be triggered by sights or sounds which would cause his flashbacks.

Dan also mentions in his blog that it may be necessary to get professional help for someone suffering from negative flashbacks.

Sunflower Lanyards

Today I wanted to write about something that I found out about recently; Sunflower Lanyards. I didn’t know anything about the lanyard or the scheme, but some of my friends who have children with autism had tried it out with success. Since then, I’ve seen the scheme advertised in my local supermarket, so was keen to find out more.

About the Sunflower Lanyard Scheme

The scheme was first launched at Gatwick airport in 2016, when staff wanted extra help recognising those with hidden disabilities in order to offer tailored assistance. The sunflower lanyard is a subtle and dignified way to meet this need. The sunflower symbol itself indicates positivity, cheerfulness and strength.

Anyone with a hidden disability, regardless of age, can wear the sunflower lanyard. The scheme recognises that many of us have disabilities or illnesses that aren’t immediately apparent to others. This could include things like autism, hearing problems, dementia or mental health issues; to name just a few. By wearing the lanyard, a person is letting staff know that they may need extra time or assistance; or just some patience and understanding.

How to get a Sunflower Lanyard

The lanyards are free of charge and available from the customer service desk of participating supermarkets. I like the fact that no proof of disability needs to be shown in order to get one, as this means that those currently undergoing diagnosis are not excluded. A lanyard can be worn by the disabled person or their carer.

As the scheme becomes more popular, more places will recognise and accept the sunflower lanyards and understand what they mean. Hopefully this will also result in staff receiving appropriate training in order to accommodate the needs of visitors with hidden disabilities.

I think the sunflower lanyards are a fantastic idea and hope that families like mine affected by autism, anxiety and other hidden conditions are able to make good use of this new and exciting resource.

Pizza Massage: Anxiety Relief

I recently attended a seminar about children with anxiety. We learned some excellent techniques for helping reduce anxiety in our children. One of the methods that really stuck in my mind was pizza massage. It is a really simple anxiety relief method that you can do anywhere. The steps are simple to remember; as long as you know how to make a pizza…

Preparing Your Child

Depending on your child, you may wish to talk them through the steps of the massage before beginning. There are some videos on YouTube that can be useful in this regard. It’s also important that they are ok with the idea of you touching and rubbing their back. Some autistic children love massage, whereas others don’t like to be touched. Ask permission or consent from the child.

The Steps of Pizza Massage

Let the fun begin! We start by kneading the dough. We do this by imagining that the child’s back is the dough. Let’s squish and press the skin gently, just like kneading real dough. Do this for a minute or two to relax the child and unknot those tense muscles.

Next we roll out the dough. We make gentle rolling motions down the back as if we were rolling dough out onto a worktop. Furthermore, there are different ways of doing this. We could use a wooden massage roller or a ball. In addition, we could make a fist and rub it down the back in straight lines.

The third step is to spread the sauce. Make a flat palm and rub it smoothly over the back as if you were spreading tomato sauce over a pizza. Make smooth, as well as sweeping motions.

Now we add the toppings. We could ask the child which toppings they’d like! Try making gentle tapping and patting motions over the surface of the back as we sprinkle all of the imaginary toppings on our pizza.

It’s time to put our pizza in the oven. Rub your hands together and blow on them to create warmth and then place them on the child’s back. Another way we could improvise this step is to get a heat pad or an item that has been on the radiator or in the tumble dryer. Rubbing it gently over the back creates a pleasant sensory experience.

The final step in pizza massage is to chop the pizza. Use your hand to make gently chopping motions over the child’s back. Now your pizza is done!

Benefits of Pizza Massage

Pizza massage is great for autistic children who are sensory seekers. Moreover, this tactile method is good for anxiety relief as it provides distraction and sensory input. It also helps to strengthen the parent-child bond. It’s a method that is very easy to remember and doesn’t require any special equipment.

So go on! Give it a go today. It’s very relaxing and fun. Maybe you could treat yourselves to a real pizza once you are done!

Max Card

This is NOT a sponsored post. I just wanted to write about a service that I’ve found incredibly useful over the past few years and I wanted to share my experiences with others. Today’s blog is all about the wonderful Max Card.

Discovering the Max Card

As a parent of an autistic child, I think it is important to avail yourself of the help and provisions that are available to you. Because of this, I registered my child on the local council disability register shortly after diagnosis. This gives us access to things like Short Breaks and the latest information about services and support.

A few years back, I received one such email; detailing an exciting provision for disadvantaged children. The Max Card is available to foster families and families with additional needs. It enables users to get a discounted admission to many attractions in the UK.

How to Get a Max Card

Max cards are provided by different charities and local authorities around the UK. They may not be available in all areas. However, it is easy to check on the website whether one is available where you live. In our case, our local carer’s centre were giving out the cards. I just popped in and gave my details and payed a small admin fee of a couple of pounds. It was as simple as that! The lady gave me my card to use straight away.

The card is valid for two years but it is very simple to renew. I just popped back into the centre with my old card and got a new one when it expired.

Where Can You Go With a Max Card?

There are LOTS of attractions in the UK participating in the scheme, including the major theme parks. Discounts vary depending on the attraction. A theme park like Alton Towers will typically offer 50% off admission to Max Card holders. Simply enter your card number on the website and you will be taken to a special page with the discounted rates.

At other places, you simply show your card at the gate to access the benefits. For example, at our local crazy golf, we got a free carer ticket. Other attractions include swimming pools, trampoline parks, experience days and pottery making. There is something for everyone.

Max Card in Summary

My family has saved a lot of money on days out using our Max Card and that it why I wanted to tell others about it. It really is a fantastic scheme. Families can use the card until their child reaches the age of 25. The website has a handy list of all the attractions covered by the scheme. You can find the ones near you by putting your postcode in the search bar on the Max Card website.

Autism and Destructive Behaviour

I don’t like to be negative about autism, but the fact is that autism often comes with certain challenges. Today I want to focus on one of them: destructive behaviour. This type of behaviour can often accompany a meltdown and can be one of the most upsetting and frustrating aspects of living with an autistic child.

Broken Things

Our house has had its fair share of broken things. Generally, it tends to be gaming controllers. The controller is often seen as the cause of frustrations during gameplay, hence it will end up being bitten, thrown up a wall or pushed into a dustbin. However, we’ve also had our fair share of other “casualties.” Our walls are a bit dented and scratched in places. We have five dining chairs instead of a set of six. We are on our fourth broken TV set.

I read an excellent article by another autism parent, showing that we are not alone. I felt an instant cameraderie with the writer of the article, as though we were members of an exclusive club; the brotherhood of dented walls. But how can destructive behaviour be managed? And how do autistic people comprehend the destruction that they create?

Autism and Perception of Destructive Behaviour

I can’t speak for every case, but I think for a lot of autistic people there is an inability to cope with the aftermath of a destructive rampage. The child has calmed down, so therefore expects everything to return to normal as it was before the meltdown. Consequences simply don’t occur to them. “I was angry. I threw the game controller up the wall. But I’m calm now and it still doesn’t work.”

As parents we can make a big mistake in trying to shield our children from the natural consequences of their actions. We fear that they will never cope with the broken controller, so rush out and buy a new one. The child learns that there are no real consequences. The magic fairy has come along and fixed everything. Calm has been restored. For now.

But the truth is, that by shielding the child, we are actually exacerbating the problem. Broken things stay broken and that lesson needs to be learned. It’s a hard one for parents. We are conditioned to want to make everything right. But long term, this doesn’t do us or our kids any favours.

Autism and Destructive Behaviour: Natural Consequences

So I now let the broken things stay broken. Games have to be played on a TV with a less than perfect display. The thick streak of solid deodorant smeared down the bedroom wall has not been magically cleaned away. Broken games consoles remain unplayable. Living with the consequences of destructive behaviour may cause a child to think twice about doing it again.

As well as this, it’s a good idea to introduce more immediate consequences, tailored to the particular child. In our case, any destructive behaviour results in an immediate ban of all electronic games for the rest of the day. A favourite game may be put in “game jail,” only to be released after a full day of good behaviour from the child. These methods haven’t prevented every single meltdown or destructive episode, but they have helped.

I’d be really interested to hear how others reading the blog have coped with negative Behaviours. Please feel free to share your parenting strategies in the comment box below.

World Autism Day 2019

Happy World Autism Day 2019! Today, many people around the world will be doing something to raise autism awareness. Children may be asked to wear odd socks or a certain colour to school. There may be fundraisers to help raise needed money for autism charities. Many autism families choose to celebrate this day as a special holiday.

More Than Awareness Needed

Whilst autism “awareness” is fantastic, what is really needed is autism ACCEPTANCE. Imagine a society that didn’t stigmatise autistic people for being different. A place where differences were celebrated rather than maligned. Wouldn’t it be wonderful if our autistic children could go to school without fear of being bullied for talking or acting the way they do.

World Autism Day 2019 should serve to educate people about autism. Yes, wearing odd socks or a specific colour to school is a talking point, but it’s important to talk about WHY they are doing this. Even the school bully might turn up to school wearing blue to “light it up for autism,” but will it stop them from from bullying the autistic kid in class once the day is over? Let’s have the conversation. Let people know how they can help autistic members of society to feel included.

Ideas For Celebrating World Autism Day 2019

World Autism Day was first designated by the United Nations in 2007, as part of a human rights initiative. Different countries celebrate the day in many creative and unique ways.

“Onesie Wednesday” is one idea, created by the National Autistic Society in 2014. People are encouraged to wear a onesie to school or work to show that being different is ok and acceptable.

Bloggers may write a special post on this day and various social media channels light up with posts and videos about autism.

Fundraisers may include sponsored events or cake sales. Autism charities benefit greatly from the funds raised as it enables them to continue important outreach work in communities, supporting families.

So, however you choose to commemorate this day…

Happy World Autism Day 2019!

Family Fund Blog: Relationships

I have the privilege of writing the occasional post for the wonderful Family Fund Blog. Each month, the blogging team are given a simple theme. We are free to develop the theme in any way we wish, creating a unique perspective on life with a special-needs child.

This month, the Family Fund Blog theme is relationships. When you have a child with autism, relationships with others can be tricky. For example, parents of an autistic child may find themselves under a great deal of stress on a daily basis. So much of their focus is on their child, that it can leave little room for their relationship with one another.

Likewise, friendships can be difficult to maintain. It can be hard to find the time to meet up with friends, as our schedules can be pretty hectic. It can also be hard to find friends that “get it,” unless they have autistic children of their own. The strength of a friendship can be measured by the ability of someone to stick with you through the good times and the bad.

At this point I want to mention some of the lovely people who help to keep me sane on a day to day basis. First of all I have to mention my husband. We’ve been married over 20 years and although our life is anything but normal, we find a good sense of humour really helps! The ability to laugh at everyday situations definitely makes challenges easier to cope with. We also find it important to try and make time for ourselves, even if it’s the odd evening out as a couple.

I have an amazing network of “autism mum friends” who I adore. It’s so good to have people that understand you and who have had similar experiences with their own children. One friend recently bought me a beautiful bunch of flowers to cheer me up when I was feeling low. Such a simple gesture had a powerful effect on me emotionally. True friends are like diamonds.

I also have very supportive parents and the best mother in law in the world. They have been so kind offering practical help as well as emotional support. I sometimes think they deserve a medal for putting up with my moans and groans!

Autism parents mustn’t isolate themselves. It’s so important to have supportive relationships. So remember to say a big thank you to all of the people in your life who are closest to you. Remember to let them know how much they mean to you and never be afraid to tell them that you love them.

Many thanks to Family Fund Blog for providing the theme for this post.