Taking Nutrition: The Points System

The term “Taking Nutrition,” refers to the physical act of taking nutrients into the body. It includes the ability to bring food to the mouth, chewing and swallowing. It also includes the ability to cut up food and use utensils properly. This section does NOT refer to the nutritional quality of the food itself. Let’s consider the points system.

• If a person can take nutrition unaided, they score zero points.

• If they need an aid or supervision to take nutrition or help cutting up food they score two points.
  
• If they need a therapeutic source to take nutrition they score two points.

• If they need prompting to take nutrition they score four points.

• If they need assistance to manage a therapeutic source of nutrition, they score six points.

• If they cannot feed themselves at all and need another person to do it for them they score ten points.

Think carefully about which of these descriptors applies best to your child and fill in the form with as much detail and as many supporting examples as you can.

Some Points to Consider About Taking Nutrition

• Think how sensory differences may affect your child’s ability to take nutrition. A common issue is that autistic people may not recognise when they feel hungry.

• Do their sensory issues cause them to become fixated on certain foods? Does this heavily restrict what they eat?

• Do they have severe coordination issues that affect their ability to use a knife and fork safely?

• Do they get hungry late and night because they don’t eat enough during the day?

• Do they need reminding to drink enough water during the day because they are so absorbed in other activities?

• Do they use adapted cutlery or cups?
  
• Do they have a real risk of choking when eating because of how they eat? Can they judge an appropriate amount of food to put in the mouth each time?

• Do they need assistance and supervision with portion sizes, for example if Prader-Willi syndrome or anorexia are considerations?

• If they suffer with depression, they may need prompting to eat meals.

Try and give specific examples for each point, as this will be important evidence to back up what you are saying. Prompting and supervision will probably be the strongest arguments that need to be highlighted when considering the needs of an autistic person.

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Symptoms of Shy Bladder

A person with Shy Bladder has nothing physically wrong with their urinary tract or bladder. The problem is psychological. It may start at school, where a child could develop a fear of public toilets for any number of reasons. Sometimes children are bullied in school toilets, and that can be a trigger. For boys, it can be distressing and embarrassing to urinate in a public urinal, flanked by other people.

Because of this fear, people with shy bladder may be unable to urinate in public toilets, or even at home if there are others around. In a public toilet, this may because they do not have complete privacy, or they know that other people are in the area or may be waiting outside. They can have a fear of people hearing them urinate, or leaving a smell that others might notice.

An autistic child may have a meltdown due to the distress that this causes, They may really want to relieve themselves, for example on a long car journey break, but may feel physically unable. If their bladder is uncomfortably full, they may feel physical pain sensations which further exacerbate their anxiety.

The body needs to relax to a certain extent in order for urination to be possible. An anxious person sends signals to their body which prevents the flow of urine.

Treatment For Shy Bladder

Exposure techniques can be useful for treating shy bladder issues. If someone is nervous about using a public toilet, they can take smaller steps to slowly reach this goal.

The most basic therapy would be simple relaxation techniques. These are an important first step to overcoming the anxious feelings that come with urinating in public. It is also important to get checked by a doctor to make sure that the problem is definitely psychological rather than having a physical cause.

Graduated exposure should be taken gently. At first, the person could go to a location where they feel comfortable going to the toilet. This would likely be at home. They could ask a friend or family member to stand outside the door as close at they feel comfortable. The aim would be over time to get the person to come closer and closer to the door.

if the person is nervous about someone hearing them in the toilet, they should gradually try and increase the amount of noise they make, whilst knowing their family member is outside the door listening.

Once they feel comfortable with this, they could try moving on to a public toilet in a quiet place that doesn’t get much footfall. Again, the goal is to use the toilet without anxiety. Once this is accomplished they can gradually visit busier public areas like shopping mall toilets or motorway service stations.

In conclusion, shy bladder can be a very uncomfortable and embarrassing situation for your autistic child, but it can be helped by gradual exposure therapy and if needed, intervention by a professional.

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The Theory of Energy Accounting

Energy accounting is a bit like managing a budget. We have deposits and we have withdrawals. Ideally, we want to make sure that there is enough in our account to cover any withdrawals that we may make.

Another analogy that a younger child may understand is that of a battery. They will probably know that when they use a device regularly, the battery will drain and get low. To remedy this, we regularly need to charge the battery. But what does all this have to do with autism and meltdowns? Let’s consider how we can apply the theory of Energy Accounting to real-world settings.

Make Two Lists

Start with a sheet of paper and draw a line down the middle. This is your ”energy account.” On one side of the line, think about activities that drain your energy. These could be things like socialising, going to school, shopping, crowded places and homework. Now fill in the other side of the line with things that replenish your energy. These could include reading, video games, massage, going for walks or doing crafts.

Once you have the two lists, you need to assign each item a value in points. For example, socialising at a party might be a huge energy drain, so you might give it 100 points. Homework might be intimidating, but less stressful than socialising so you might only give it 30 points. Do the same for the ”battery charging” activities. Maybe an hour of video games would be worth 50 points or a long walk 70. The points system is unique to each individual.

Balancing the Energy Account

Now comes the hard work of putting it all into practice. Regularly use language with your child that refers to the energy account. Talk about ”recharging” or taking time out for yourself regularly. Write these activities on the chart and see how the energy accounting model impacts on everyday life. Be sure to put plenty of ”deposits” into the account, with plenty of fun and restorative activities to balance out the stressors of each day.

You could even print out a picture of a battery for younger children to fill in so that they become familiar with the activities that decrease and increase their energy reserves.

Many have found this innovative approach useful. I hope that you do too. For more information, I recommend this excellent video from Purple Ella.

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Parking and Tickets

Unlike some of the larger theme parks, which have huge car parks, Flamingo Land has quite a user-friendly car park. Everything is in easy reach of the gates. Car parking is free and there are designated Blue Badge spaces right by the entrance. Even though we have a Blue Badge, we decided not to use it as everything was a short walk away.

It is best to book tickets online. Carers get in free and it is easy to add this to your booking. Just be sure to bring any evidence with you to the theme park. DLA or PIP letters will be accepted. Remember to bring photographic evidence to accompany it.

Access Pass

Flamingo Land has an access pass system for those who cannot stand in queues. Autistic people may find it very distressing to stand in a queue because of the noise and crowds. They may also find waiting very difficult and uncomfortable.

To get an access pass and band, just head to the First Aid office just as you go into the park. The staff are very helpful and friendly and you can show them your disability evidence documentation. Again, be sure to include photographic proof that the person on the document is the same as the person applying for the pass.

You will then be issued with a pass, as seen in the image above. The disabled person will be designated one carer, who will wear a wristband. Unlike some other theme parks, which allow multiple family members to ride together, Flamingo Land only allows one.

Using the Accessibility Pass

To be fair, the queues are quite short for most rides in the park, and in most instances we found that we didn’t need the pass. However, for some of the more popular rides, the queue pass was invaluable.

The rider goes to the disability gate, usually the exit of the ride, and shows their pass and wristband. The ride operator will then allow them onto the ride but will also mark their card with a time that they can next use it. This is a form of ”virtual queue.” For example, if a ride queue is 45 minutes, the rider will not be able to use the pass again for the same length of time. This is in fairness to the other park guests. It saves the disabled person from having to stand in an uncomfortable queue and during that time they can either ride one of the smaller rides, or do a different activity.

There are 9 spaces on the card, but it you fill them up, you can get a new card from the office. We didn’t use all of the spaces in our card.

Other Accessibility Information

Flamingo Land also has a number of facilities to help disabled people to have an enjoyable day out. There are disabled changing facilities, which are accessible by RADAR key. Wheelchairs are free to loan with a non-monetary deposit such as a driving license or passport.

Some areas of the park can get very loud, so I’d also recommend breaking the day up by going to the zoo area, which is quiet and peaceful of things get too much.

If your autistic child loves days out like this one, I’d recommend reading my article about the Max Card, which has many discounts and perks for autistic families.

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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.

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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.

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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.

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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!

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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.

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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.

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