Today’s blogpost is something special. I was asked by family fund to write a piece for National Anti-Bullying Week 2019. It runs from 11th-15th November. Bullying can be a particular problem for autistic children, as they can be “easy targets,” standing out as different from their peers. Furthermore, they may have behavioural quirks, sensory issues, or struggle to understand social cues.
Thankfully, as a family, we haven’t had a lot of experience with bullying; my son is at a good special school which deals with incidents very quickly. However, when he was at primary school he did have some problems. It was a mainstream school and he found it hard to fit in. I’d like to share some snapshots from my previous blog to show how difficult school days could be:
“…things came to a head yesterday. He said that the boy had twisted a paperclip open and had been trying to stab him with it. He also said that the boy had picked his nose and tried to wipe it on my son’s top. When my son goes into the corridor to get his coat, the bully blocks his way.”
“Yesterday, My son said that the bullying had started again. The boy had been taunting my son with a bag of Monster Munch (snacks with a very strong flavour and scent). Kids with autism are hypersensitive to smells, and the smell of Monster Munch makes my son feel sick. When the boy realized this, he kept putting the bag near his face and then eventually threw the bag of snacks in my son’s face. Of course, my son did not think to mention any of this to a staff member.
In the playground, my son plays by himself. He is happy in his own world. During break, a kid kicked a football in my son’s face. He said it was an accident, but the child involved was a child who had been previously bullying him.”
Or course, these incidents also affected me as a mum:
“He was pretty miserable about going in today. I had to fight back the tears when I sent him in…felt like I was sending him to his doom. I’m in tears typing this.”
One of the big problems we had was that my son wouldn’t think to report these incidents or tell me about them. Therefore I’m aware that there were probably many other incidents of bullying that I never knew about.
Having an autistic child in the family caused another type of bullying too. One day I went to the school to watch the children singing in a concert. My oldest son was sitting in the middle row with all of the other children enthusiastically singing around him. However, my son wasn’t singing. He was crying. In the audience, I felt helpless. I didn’t know what was the matter. I didn’t know how to help him. After school, I asked him why he’d been upset and couldn’t sing. He explained that just as the concert had started, the boy behind him laughed and whispered in his ear “Your brother is disabled.”
From the stories that I’ve shared, it’s easy to see how bullying can affect each member of the family. Moreover, my examples aren’t even extreme. Imagine how tough it must be for those who experience physical beatings, cruel cyber bullying and death threats.
The theme of Anti-Bullying week 2019 is “Change Starts With Us.” It emphasises how we can all work together to stop bullying. We have a collective responsibility to do something and to speak out. Change starts with us…
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!
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.
As most parents of autistic children know, a diagnosis is not a magic bullet. You are not suddenly entitled to support and help. There is no assurance that everything will be ok. This is just the start of the fight; and plenty of frustration along the way. Today I want to talk about my latest experience with CAMHS and why I feel that everyone involved in my child’s care thinks that his issues are someone else’s responsibility.
At the moment, there are three main avenues for support for my child: School, Paediatrician and CAMHS. Each one loves to push the responsibility onto the other, creating a triangle of frustration. Let’s consider each one in turn.
The Paediatrician is an elusive creature and getting an appointment to see her is akin to one of those 1980’s fantasy movies involving some sort of impossible quest. She is always out on call, so I leave messages with her secretary, never to be returned.
In the rare instance that I did manage to speak to her, she promised me an appointment on 7th September. This never materialised, as she is a very busy lady. However, she did let me know that I’d be much better off speaking to CAMHS as they’d be able to deal with my enquiry quicker. At this point in time I’m still waiting for the Paediatrician to get back to me with an appointment.
This brings us to….
Anyone who has ever tried to get an appointment with CAMHS will tell you that it’s a waiting game. We did manage to get an initial assessment, only to be told that we’d be seen in 8-9 weeks. It is now 9 weeks and CAMHS have told us that there’s no chance of us being seen any time soon because they are very busy.
However, they did chat with me on the phone and made it clear that they don’t deal with autism issues and if my child’s problems were because of his autism then they wouldn’t see him. They also told me that I should speak to the PAEDIATRICIAN as she could prescribe something to help him, but also to speak to the SCHOOL as most of his issues were due to school anxiety.
So let’s call the….
School were very lovely and friendly. They noted down my concerns. They told be to call CAMHS immediately to get him put higher on the list and also to speak to the PAEDIATRICIAN. I guess that brings me full circle then.
As you can see, each department tries to direct the frustrated parent to another department, whilst denying that they are doing exactly that. Heaven forbid that the departments should actually try talking to each other and sharing information. I’m not at all surprised that children slip through the net and end up harming themselves. The system is completely broken and not fit for purpose.
NICE Guideline 170
I found a fantastic article at It Must Be Mum explaining that of CAMHS refuse to treat a child with autism, they are going against NICE guidelines. NICE guideline 170 states that:
“The following recommendations have been identified as priorities for implementation. Access to health and social care services:
Ensure that all children and young people with autism have full access to health and social care services, including mental health services, regardless of their intellectual ability or any coexisting diagnosis.“
Surely if CAMHS refuse to see a child based on their autism, parents could try quoting this to access help.
I’d love to know about your experiences with CAMHS and the school system. Please share your thoughts in the comments section below.
This week saw some exciting news for the autistic community. Families affected by autism will soon be able to apply for a blue parking badge. This will mean that they can use bays reserved for disabled people. The change is a result of many years of campaigning by autism charities. Authorities and organisations are becoming increasingly aware that not all disabilities are visible. This article will examine the new changes and discuss how to apply for a blue badge.
How Can Autistic People Qualify for a Blue Badge?
It is important to note that not autistic people want, or need, a blue parking badge. However, for many families, the new changes will make a huge difference to their quality of life. For example, a family with a severely autistic child may currently be unable to leave the house if their child has a poor sense of danger, or is prone to unpredictable meltdowns. Some autistic children will bolt and run away, causing danger to themselves and road users alike. Children with autism may also be prone to destructive behaviour.
For the reasons outlined above, we can see why the new changes have been made. Currently, a family affected by autism can apply for a blue badge if they:
1: Cannot take a journey without risk of serious harm or psychological distress.
2: Have 10 points on the PIP mobility component if planning and making a journey causes significant distress.
How to Apply for a Blue Badge for Autism
The new rules will come into effect from the 30 August 2019. From this date, families will be able to apply online for a blue badge under the new criteria. The website is https://www.gov.uk/apply-blue-badge.
The National Autistic Society also have some useful advice about the application process for a blue badge on their website. It also has some real-life stories that show how families will benefit from having a blue badge.
New Blue Badge Rules Help Autistic Families
The new rules are overwhelmingly positive and will give families affected by autism a new lease of freedom. Individuals with autism, as well as those affected by anxiety, OCD or dementia will also benefit. It is encouraging to see how small changes like these can make a big difference for autistic children and their carers.
As my daughter is currently in her final week of GCSE’s, it seemed only appropriate to write a special blogpost all about autism and exams. This time of year, teenagers up and down the country are sitting their GCSE and A Level papers. For the autistic child, formal examinations can create a unique set of issues and challenges. It is useful to know what kind of help is available in order to minimise the stress associated with exam season.
Does My Autistic Child Need/Want to Take Exams?
The first point to address is whether taking exams is in the child’s best interest. Autism, being a spectrum condition, affects people in any number of ways. This will affect their ability to perform in an examination scenario. Schools should treat each child as an individual. Will an exam cause unnecessary stress? Is the child capable of doing the work needed in order to pass the exam? Are they able to understand what is expected of them?
In some cases autistic children are not able or ready to do a GCSE. However, there are many entry-level qualification options available to choose from that may be more suitable. Also, an autistic child may excel in more practical subjects. In that case a vocational course may be more appropriate than an academic one.
When deciding what qualifications to take, it is important to consider the interests and strengths of the child. What subjects are they strong in? What does the child want to do as a career? Are they considering a university path? These questions are important when considering which exams to take.
Autism and Exams: Access Arrangements
Schools are able to make special arrangements for autistic pupils taking exams. Again, the needs of the child must be considered. How does their autism affect them in an exam scenario? For example, a child with sensory issues may have problems sitting in an exam hall with other pupils. The sounds of people tapping their feet, pens on paper, coughs and sneezes, may be extremely distracting and uncomfortable. A child with autism may also have fine motor problems, which means that they cannot write as quickly as other children, which would be a great disadvantage in a timed exam.
Access arrangements may include placing a child in a smaller, quieter room to take the exam, so that there are less distractions. Autistic children may also be given extra time to complete their work or allowed access to a laptop or computer so that they can type their answers rather than write them. They may be allowed a reader and/or a scribe during the exam.
It is important to contact the school as soon as possible to put access arrangements in place. These often need to be arranged months in advance with the cooperation of the exam board involved.
Autism and Exams: In Summary
Autistic children are definitely capable of sitting exams and qualifications are more accessible than ever. Schools are making it easier for autistic children by being more inclusive. Autism needn’t be a barrier to academic achievement.
Here’s wishing everyone taking exams every success this year. Keep overcoming challenges and persevering. Hopefully, your hard work will be reflected in your grades in a few months time. And also don’t forget the amazing teachers, parents and support staff who help our autistic children to be the best that they can be.
For more information, the National Autistic Society has a useful webpage on exam guidance.
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.
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.
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!
Today I wanted to write about an organisation called Young Minds that is doing a very important work. This is not a sponsored post; I’ve actually used their helpline myself and wanted to share with others how helpful it’s been.
Young Minds is a charity that focuses on the mental health of young people. They want all young people to feel supported and empowered, whatever their mental health issues. They listen without judgement and try to offer help and solutions to families affected by all types of mental health problems. This is especially important for the most vulnerable and excluded members of society. The charity also seeks to influence mental health legislation for better outcomes for patients.
Young Minds Parent Helpline
The charity runs a dedicated phone helpline for parents. The line is free to call and is available Monday to Friday 9:30-4. Outside of these times, parents can leave a message via the online contact form and the charity will be in touch as soon as possible.
I’ve used the helpline myself and found the experience incredibly positive. I had concerns about my child and I wasn’t really sure where to go for advice. I called the number and the lady that answered my call was very calming and reassuring. She listened to everything I said and noted it down carefully. I already felt a lot calmer by the end of the call. It felt like a burden shared.
The call handler explained that I would be contacted within a few days by a mental healthcare professional. I did not have to wait long. The following day I received a call from a warm and friendly man who discussed my concerns at length. The call lasted just under an hour and he was able to offer me a lot of practical advice. By the end of the call I had a clear plan in mind of how to get help for my child and things to discuss with the GP. Incidentally, the chat also drew my attention to a condition called PDA, which is a form of autism that I’ll be discussing in a future blog post.
Crisis Line for Young People
As well as supporting parents, Young Minds offers valuable support to young people themselves. Their newest innovation is a Crisis Text Line which they can access during a mental health crisis. All they have to do is text YM to 85258 and Young Minds will reply immediately. The service is free and available 24/7.
I think that a text service like this is invaluable, because it gives support to the most vulnerable members of society and is a lot less intimidating than speaking to someone.
Young Minds are an amazing organisation doing an important job. There are so many young people suffering with mental health issues today. It is good to know that the support is out there and accessible. It’s my hope that this blogpost can help at least one person or family by signposting them in the right direction.
Visit the Young Minds Website for more information or to donate.
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.