Taking Care of The Carers

Being a special needs parent isn’t easy. No one prepares you for it. While your friends are off living their typical lives with their typical children, it can feel quite isolated and lonely. But you are not alone. There is a whole army of special needs parents and carers out there. We’re all in this together! Recently, we held a webinar about how to take care of ourselves as the carer and below are some of the best strategies and links we discussed.

Mind. uk has some great advice for carers:

“When you spend a lot of your time focusing on someone else, you may feel as if you have
no time for yourself. But looking after your own wellbeing is important for you and for
them.
We have listed some self-care ideas that others have said they find helpful. Even trying
one small thing might help you feel more able to cope.

Share how you feel


It’s important to have someone to talk to, especially if you’re struggling to cope. You
could:
• share your feelings with someone you trust, such as a family member, friend or
neighbour
• join a support group for carers
• contact the Carers UK helpline
• talk to others on the Carers UK forum
• talk to someone through online mental health tools.
Not all of these options may feel right for you. Or you might feel like you have nobody to
share your feelings with. If you are feeling isolated or alone, our pages on coping with
loneliness offer more information.


“Try to find someone you can be honest with about your feelings, without
judgement.”

Try to be realistic


If you take too much on, you may feel as if you never achieve anything. Try to get a clear
idea about what you can do. By accepting the things that you can’t change or do alone,
you may feel more able to cope. You could try identifying and writing down:
• a list of all the support needs of the person you are caring for
• what you can do and what you’ll need help with
• how you’ll know when you need a break.


“Respite is possible – and necessary. You can’t give your all as a carer – you
just can’t. You have to save a bit of yourself just for you.”

Take a break and make time for yourself


Try and take a break, especially if you’re worried about your own mental health. You may
not be able to take a break whenever you need one, but it’s important to have some
time that’s yours.
You may need an hour or two to clear your head, or a day to help you feel more rested.
You could go out, have a nap or turn your phone off for an agreed period of time. Try to
make time for things you enjoy.


“I love running and being able to get out for half an hour each evening
allowed me to clear my head and relax.”

Look after your physical health


It’s important to try and make time to look after your physical health as best you can.
• Try and eat as healthily as you can and do some kind of regular physical activity.
See our pages on food and mood and physical activity for ideas you can fit into a
busy daily routine.
• Try to get enough sleep, as a lack of sleep can make it harder to cope with
everyday challenges. It can also make stress and depression worse. For more
information, see our pages on sleep and mental health.
• Use relaxation techniques, as these can help your mind and body feel more
rested. You need just a few minutes a day to do most of these exercises. For
more information, see our pages on relaxation.


“I have come up with my own saying, which is ‘you have to make your own
normal’. Your life changes so much as a carer and you have to make a new

life for yourself. You do not want to feel excluded from life, so you make
your own normal.”

Parents with chronic illness

A lot of parents of children with special needs are also coping with health problems of their own. Many of the parents we speak to each week are struggling with fatigue, anxiety, fibromyalgia, migraines or CFS. One thing that can help is to make sure we are taking care of ourselves physically. Here is a list of supplements that can help support carers physically and mentally.

Sleep

Restorative sleep is so important, both as a carer and as someone with a chronic illness. Have a look at our blog post about sleep solutions and get started on the passionfruit tea!

Migraines, Fatigue and Chronic Pain

Supplements to help with migraines, fatigue and chronic pain include a combination of Riboflavin (Vitamin B2), Co Enzyme Q10, and magnesium. My neurologist (who specialises in migraines), recommends 200mg riboflavin, 300mg Co Enzyme Q10 and 300mg magnesium each day. Please be sure to check with your GP or primary care physician first though!

Hormonal Imbalances

Hormonal imbalances are really tricky to deal with. It can be hard to get a referral to endocrinology and access the help we need. This tool by Dr Tassone (an OB/GYN and specialist in women’s endocrine issues) helps to pinpoint the areas of the endocrine system which need support. He then recommends a variety of diet, lifestyle and supplements for each Hormone Archetype.

You’re not in this alone. If you are struggling with being a carer and taking care of your own health, please get in touch with Carers Trust or visit Mind UK

They can put you in touch with local support groups, online carer forums, and grant providers; as well as providing lots of resources and strategies to help you manage.

Pathological Demand Avoidance: what is it and what strategies can help?

A lot of our children with additional needs struggles with everyday ‘demands’- requests, expectations, questions, commitments. But for some, even the most routine of expectations cause great anxiety; that’s when we see Pathological Demand Avoidance (PDA) or extreme demand avoidance.

What is PDA?

Pathological Demand Avoidance (PDA) is a condition which is part of the autism spectrum, and is characterised by an overwhelming need to avoid or resist demands.
This information sheet provides some behavioural strategies to support a person with PDA.
Key characteristics of PDA
Along with other characteristics seen on the autism spectrum, a person with PDA may show the following features:
• An obsessive resistance to ordinary demands and requests
• Use of socially manipulative or outrageous behaviour to avoid demands
• Sudden changes in mood apparently associated with a need to control
• ‘Surface’ sociability, reflected in social peculiarity, difficulties with peers and lack of social constraint
• Comfortable in role play and pretending.
Like many other people on the autism spectrum, people with PDA experience high anxiety levels and can feel that they are not in control. This leads people with PDA to avoid and refuse any requests that are made too assertively. Sometimes this is due to how the person with PDA interprets the question or instruction. This can lead them to avoid tasks and activities that they would otherwise enjoy, which can be upsetting for the person with PDA.

Core features of PDA are:

  • A need to resist normal, everyday demands made by others
  • This resistance appears to be a way of managing acute anxiety
  • Unlike those with autism, learners with PDA may use social skills to manipulate; these skills are, however, at a functional and logical level rather than at a deeper emotional level.

What are the differences between learners with PDA and autistic spectrum disorder (ASD)?

  • Passive early history in the first year

Young people with PDA tend to sit on the side lines just watching what is going on. They can be described as ‘actively passive’, letting things drop to the floor from their hands. They develop strong objections to normal requests. This is unlike young people with ASD who tend to lack social response and empathy, and tend to have poor body language and stereotypical behaviour.

  • Continues to resist and avoid ordinary demands of life

Young people with PDA devote themselves to resisting ordinary demands, and as their language develops this can become worse. They may well acknowledge the demand but then can come up with a myriad of excuses as to why they cannot comply such as, “my legs won’t work”, “the teddy told me not to do that,” etc. They may crawl underneath furniture and say that they cannot do something because they are ‘stuck’ and often use fantasy to withdraw, pretending to be a cat or a super hero. This is unlike young people with ASD who may be reluctant to follow a demand, but this tends to be by ignoring or shutting out pressure in a non-social way with few direct strategies for avoidance. Their approach is more direct than devious.

  • Surface sociability, but apparent lack of sense of social identity, pride or shame

Young people with PDA look more sociable but this is without depth. They have few boundaries and can display uninhibited behaviour that can be shocking. Praise, reward and punishment are likely to be ineffective. Young people with ASD are not inclined to use manipulation because of a lack of social empathy and often there is no impression of sociability.

  • Lability of mood, impulsive, led by need to control

Young people with PDA can switch from passive to aggressive very quickly. They may apologise yet do the same thing again straight away, whereas young people with ASD are seldom impulsive, tending more to work to their own rules and not put an act on for anyone.

  • Comfortable in role play and pretending

Young people with PDA can behave to other learners like the teacher. Some lose touch with reality, adopting a ‘video’ character. Young people with ASD tend to be inflexible with a lack of symbolic or imaginative play due to a lack of social empathy.

  • Language delay, seems result of passivity

Young people with PDA tend to have an early language delay and often a sudden catch up. Their social use of language can appear normal although content may be odd. Social mimicry is more common than video mimicry. Young people with ASD have language which is both delayed and deviant. Their social language skills are poor.

  • Obsessive behaviour

Young people with PDA have obsessions which tend to be social in nature. They can be over-powering in their liking for certain others. Most behaviour is obsessive, especially the demand avoidance, and can lead to low levels of achievement. Young people with ASD have obsessions which are rarely social and not focused on demand avoidance. Their obsessions are not used for manipulative purposes.

Young people with PDA are less likely to:

  • have caused anxiety to their parents before 18 months of age
  • show stereotypical motor mannerisms
  • show echolalia or pronoun reversal
  • show speech abnormalities in terms of pragmatics
  • show tiptoe walking
  • show compulsive adherence to routines

Young people with PDA are more likely to:

  • resist demands obsessively (100%)
  • be socially manipulative (100% by age of 5)
  • show normal eye contact
  • show excessive lability of mood and impulsivity
  • show social mimicry (including gesture)
  • show role play (more extended and complete than mimicry)
  • show other types of symbolic play
  • be female (50%)

Which strategies may help?

The PDA society provides many helpful suggestions, along with its useful PANDA mnemonic

PDA Society: helpful strategies

The website goes on to explain further:

Understanding behaviours

  • Anxiety – the most important starting point is to understand and accept that a PDA child’s behaviours are underpinned by anxiety and a need to feel in control. Anxiety can be expressed in many different ways including avoidance, anger, shouting, crying, restlessness, boredom, fidgeting, rocking, ticks, repetitive actions, obsessing, skin picking, swearing, hiding, running off, withdrawing, throwing things and lashing out at others. The anxiety curve model is a really helpful way to understand anxiety and echoes the hierarchy of demand avoidance approaches seen in a PDA profile of autism. All the helpful approaches explained below are designed to help our children remain on the ‘lower slopes’ of the anxiety curve and avoid escalation where possible.

In addition, any or all of the following may be underlying …

  • Difficulties in processing language – our children may have good expressive language but may not be able to process verbal communication quickly enough to keep up during a conversation and may be confused by non-specific questions or instructions (please listen to our webinar about PDA and speech & language for more detail).
  • Difficulties with social interaction – our children may not always understand the ‘unwritten rules’ of social interaction or non-verbal communication including body language and tone of voice.
  • Confusion about emotions – our children may not be able to understand or accurately ‘label’ emotions in themselves or other people, or may feel overwhelmed by their own and others’ emotions.
  • Intolerance of uncertainty – our children may struggle with all the ‘what ifs’ of life, not knowing how things might ‘pan out’, what might be expected of them, where a situation might lead, when a situation might end and whether they will be able to cope with whatever may come along.
  • Sensory overload – our children’s heightened sensory perception can also contribute to anxiety, overload and avoidance (please listen to our webinar about PDA & sensory processing for more detail).

Adjusting your mindset

A repeated theme in our case studies is that PDA turns “parenting norms” upside down, so our own mindset and mood are key factors in developing a toolkit of helpful approaches. Please listen to our webinar for more detail on this, but some key pointers are:

  • Look beyond surface behaviours – outward behaviours are just the tip of the iceberg with many contributory factors lying below the surface as explained above.
  • Re-balance your relationship – a more equal relationship between child and adult, based on collaboration and respect, builds trust. Try to aim for win:win solutions.
  • Keep calm and carry on – try not to take things personally; model desired behaviours; pick your battles; treat every day as a fresh start.
  • Focus on the long term objective of building a child’s ability to cope rather than short term compliance.
  • Be flexible – helpful approaches require creativity and adaptability.
  • See the positives – whilst supporting our children’s challenges, try not to lose sight of their many positive qualities.
  • Support and self-care for you – being in touch with others who are having similar experiences can be enormously helpful and local families may have invaluable tips relevant to your area (please search our resources directory for support groups near you). It’s also important to ensure you are caring for yourself as well as possible.

Optimising the environment

Just like giant pandas, our children can thrive in the right environment – in place of firm boundaries and the use of rewards, consequences and praise, an approach based on negotiation, collaboration and flexibility tends to work better in PDA households. Top tips include:

  • Balancing tolerance and demands – a child’s ability to cope with demands will vary from day to day and from hour to hour, so try to control the ‘input’ of demands accordingly (remembering that demands are many and varied) and build in plenty of ‘downtime’ to give space for anxiety to lessen and tolerance levels to replenish.
  • Agreeing non-negotiable boundaries – these will vary from household to household and from child to child. For some, the barest minimum of non-negotiable boundaries (such as basic health and safety requirements or those relating to their siblings) may be needed when anxiety is very high, but they may be increased over time. Sharing clear reasons for these boundaries, and agreeing on them together as a family, can help our children to adhere to them. Enforcing these boundaries without exacerbating things may require the use of other helpful approaches (please see next section on reducing the perception of demands).
  • Allowing plenty of time – time is an additional demand, so it’s helpful to build in plenty of time (for instance, setting alarms earlier on a school morning). Always try to plan ahead, anticipate potential challenges and allow some flexibility to accommodate fluctuating anxiety levels.
  • Having an exit strategy – knowing how to extract yourself from a situation can help with reducing anxiety (for instance, you might agree a quiet zone where a child can retreat to or provide reassurance that if something can’t be done today it can be tried again tomorrow).

Reducing the perception of demands

Re-framing demands to make them feel less ‘demandy’ is a key technique. There are lots of ways to do this – you will probably find that a ‘mix and match’ approach works best:

  • Phraseology and tone: subtle adaptations to our language and tone can benefit our children greatly. Using declarative language (like a ‘commentary’) or rephrasing things to talk about an object rather than a person and even simple things like starting rather than ending requests with the word ‘please’ can all make a big difference. For instance, when getting ready for school you might say “The clothes are on the bed. I’m happy to help.” and then walk away, rather than “You need to get dressed now” or if your child hasn’t had a drink all day you might just place the drink alongside them and say “Here’s a drink”. Similarly phrases such as “I wonder whether …” and “Let’s see if …” reduce the perception of demands. Likewise it’s helpful to avoid trigger words like “no”, “don’t” or “can’t” – you can convey the same message using different terminology (e.g. “I’m afraid it’s not possible right now”) and if you can also explain the reason and offer alternatives whilst delivering the message (e.g. “I’m afraid it’s not possible to go to the park right now because there’s a storm, but we can try this afternoon when the forecast is better and in the meantime would you like to bake a cake or watch a film?”) this can help avoid escalation.
  • Indirect communication: indirect communication includes physical prompts (e.g. tapping shoes instead of saying “please put your shoes on”); visual prompts (pictures or checklists (ensuring our children have an element of choice and control, for instance in the order that things are done rather than a more formal ‘first this … then that …’ approach), post-it notes or communicating via instant messenger apps can work well); telling someone else to do something whilst in our child’s earshot (e.g. telling another child or adult “Please remember the rules about not running at the side of the pool” when you know that they know the rules already); leaving leaflets/books ‘lying around’ for our children to pick up out of natural curiosity; communicating using role play or via a third party (e.g. communicate through a favourite toy or by adopting the persona of a favourite character).
  • De-personalising: explain that the requirement is made by some other, higher authority than you – for instance that “the pool manager is shutting the pool at 3pm” or that a certain law dictates certain rules.
  • Distracting/turning things into a game: the idea here is to focus on something else other than the demand, so you might say “let’s see who can pull the silliest face between each item of clothing” when getting dressed or “let’s list the top 10 dinosaurs” whilst getting into the bath for instance.
  • Using humour/novelty: humour  is a great way to make everyone feel more relaxed and to help reduce the perception of demands; and novelty (provided the change in direction feels like a bonus/benefit for the child) can also work well.
  • Asking for help: saying that you don’t know or can’t remember how to do something can be a great way of making a demand more indirect.
  • Offering choices: the idea here is to give a child some control without losing all control as the adult, by offering limited choices (and being willing to accept a different choice of their own that still achieves the aim) or by offering free choice within certain parameters. For instance, you might ask “would you prefer to have a bath at 6 or 7 this evening” (and accept their negotiated answer of “6.30”) or you might stock a cupboard or shelf in the fridge with a range of healthy options and allow your child free choice of any items from there.
  • Model behaviours or apply demands to yourself (with no expectation that your child will follow suit) – for instance, you might say “I’m feeling really stressed right now so I’m going to lie down in a quiet room and listen to some whale songs to help me to calm down”.

Being cautious with rewards/praise/sanctions

It can be helpful to understand why more traditional parenting approaches – such as rewards/praise/sanctions – don’t tend to be effective in PDA households.

Rewards create an additional demand on top of the demand itself; they magnify the problem if something isn’t achieved because not only is the ‘thing’ not achieved the reward isn’t earned either; and they don’t address the underlying difficulties or lacking skills which may have prevented achievement in the first place. What can work well are surprise rewards, rewards that are bestowed immediately (rather than waiting until the end of the day/week) and rewards that are tangible (rather than stickers or tokens) or matter to the child (they may be things that are linked to their special interests or involve free time to pursue an activity of their choice).

Praise may be perceived as a demand to repeat or improve on previous performance, and encouragement can feel like a demand as it increases the sense of expectation. It can be helpful to praise indirectly – for example praising the results rather than the person (e.g. “what a wonderfully tidy room” rather than “well done for tidying your room”) or praising your child to a third party in your child’s earshot. When offering encouragement, providing choices and exit strategies can be effective (e.g. “It would be great for you to go to the cinema with your friends, but don’t worry if it feels too much once you’re there, you can call me and I’ll come and pick you up”).

Sanctions or consequences may feel unjust when behaviours are a question of “can’t” not “won’t”, and may appear controlling and arbitrary when not directly related to the behaviours in question (e.g. what connection is there between not being allowed on electronics and being mean to a friend?) – they tend to lead to confrontation and escalation. Natural consequences which flow from behaviours (e.g. a friend not wanting to play or not being able to watch TV if it got broken during a meltdown) enable lessons to be learned in a more realistic way. When everyone is calm, discussing ways to avoid difficult situations from arising in future is another way for natural consequences to unfold.

Supporting sensory needs

Our children may be hyper-sensitive (seeking to avoid the sense) or hypo-sensitive (seeking out more of the sense) to any of the senses listed below:

  • Auditory
  • Visual
  • Oral
  • Smell
  • Tactile
  • Vestibular (the sense of movement and balance)
  • Proprioceptive (the sense of ‘position’ of your body in space and the input from muscles and joints to the brain)
  • Interoception (internal senses from your body, such as hunger, thirst, pain and needing to use the toilet)

It’s possible to be both hyper and hypo sensitive to the same sense (for instance, someone may enjoy their own noise (e.g. their voice or choice of music) but find others’ or background noises intolerable) and it’s important to remember that sensory perception and sensitivity can also vary depending on levels of anxiety, illness, the type of surroundings and so on.

Falkirk Council’s helpful guide “Making sense of sensory behaviour“, the Sensory Processing Checklist and resources on Sensational Brain are useful places to start, along with our helpful webinar on this topic. The Greater Glasgow & Clyde NHS website also has useful sensory resources and the South Australia Department for Education has resources about Ineroception. An Occupational Therapist trained in sensory integration can assess a child’s sensory needs in full and may suggest a ‘sensory diet’. There are a few suggestions to try below:

  • Chewy toys for those who seek oral sensory input
  • Headphones playing a child’s favourite music or audio book for those who become easily overstimulated by noise and crowded places
  • Carrying an object with a favoured scent (eg. candle, soap, pillow or spraying a sleeve or handkerchief) for those who become distressed by unfamiliar or unpleasant smells
  • Seamless socks, wide fitting shoes and cutting labels out of clothes for those who are hyper sensitive to touch
  • Asking before touching/hugging your child as some children are sensitive to touch – or equally some children may like the comfort of deep pressure and may feel well regulated using weighted blankets or similar.
  • Wearing tinted or sunglasses for those who are over sensitive to light
  • Taking packed lunches with preferred food/drinks for those who are avoidant of certain foods/textures.
  • Access to messy play or a fidget toy for those who seek tactile input
  • Plenty of opportunity for movement e.g. scooter, trampoline, running and bike rides for those who seek plenty of movement
  • Rough and tumble play, playing in ball pits and sensory toys (such as a body sock) can be helpful for those with proprioception needs.

Supporting social communication & interaction

Our children often need support in relation to processing language and social interaction. A speech and language therapist can assess a child’s communication and interaction skills and make detailed recommendations. Our helpful webinar on this topic is useful place to start – a few top tips are shared below:

Communication

  • Allow extra processing time so that your child can make sense of what you have said and have time to think about how to respond – it can be helpful to count to 5 in your head following a statement or request.
  • Chunk questions or requests (space them out one at a time) rather than saying or asking many things in one go. Allow time for your child to answer your first question or respond to your first request before adding any follow-ups.
  • Be clear and precise whilst being indirect – for example “I wonder if you could help me. I need four blue cups, from that cupboard, to be put on the table in the kitchen”.

Social Interaction

  • Role play can help our children understand other people’s perspectives, how someone’s actions can make another person feel  and how this can affect relationships.
  • TV/books can be a good way to learn about emotions, relationships and social dynamics, and enable our children to develop understanding and skills, in a more indirect way.
  • Be inventive by linking activities to your child’s special interests or by using role play (e.g. your child could be the teacher for the day and teach her/his toys a social story or how to act in certain social situations) or by making a poster together that will tell other children how to behave.

Approaching behaviour that challenges

The helpful approaches outlined above are often very effective, and the frequency or intensity of meltdowns usually subside. However, meltdowns (best seen as panic attacks) are still likely to occur – please see our detailed page on meltdowns for more on this. It’s really useful to understand the triggers and/or possible purpose behind any behaviour that challenges – please see understanding behaviours for a structured approach to building up a picture of what can lead to these episodes that also points us towards the approaches that may be helpful.

Following a situation that has been tricky to handle, it can be helpful to reflect back and think about how a re-occurrence might be avoided in future. Try to approach this with a detective’s hat on, take the learning points on board but try not to dwell too much on things.

Working together with our children collaboratively and proactively to find solutions can also be really beneficial – many families find Dr Ross Greene’s approach  in this area extremely helpful, it is explained in detail on his website and in his books ‘The Explosive Child’ and ‘Lost at School’. Ross Greene’s approach is also particularly useful when there may be doubt or disagreement about diagnosis as his approach is diagnosis ‘agnostic’.

Recognising and regulating emotions is something most of our children find very difficult. Whilst our children are young, the adults around them will need to be very vigilant in spotting the signs that anxiety is escalating. As our children grow older and their emotional intelligence develops, they may be able to recognise their emotions and deploy their own coping skills more effectively. Books can be a good way to learn about emotions, and enable our children to develop understanding and skills, in a more indirect way. There are some general book ideas that may be helpful with this in the resources section.


Supporting emotional well-being

It is important to remember to try and support our children’s emotional well-being by

  • focusing on their many positive qualities as well as trying to support them with areas that they find difficult
  • regularly reminding them that they’re valued for who they are and that it’s ok to be different
  • regularly reminding them that they’re loved through whichever medium works best for them
  • supporting them with the things that they’re interested in rather than trying to impose on them what you feel they should be doing
  • speaking about them in positive terms to other people e.g. “Millie has an amazing imagination, she always thinks of really good games to play” or “Luke really makes me laugh, he’s such good fun to be with.”

Further information

For more information and support, please have a look at these useful resources and websites:

Special Needs Village SEND Video Playlist

The PDA Society

Understanding Pathological Demand Avoidance

Behavioural Strategies for PDA

Information for parents of children with PDA

How to help our children with anxiety: The Worry Eater

Worry-eaters!
These are a fabulous resource if you have a child who struggles with anxiety and also finds it difficult to either express their worries or put them to one side. They can draw a picture of their worry, or write it down and then feed it to the worry monster!

When the child is ready, they can take the worry out and chat about it. Sometimes they prefer not to; they like to feed the worry to the monster and then forget about it.
Use your discretion as to whether it’s a big worry that needs to be talked about; or a little worry that can be mentally processed and then discarded.

It’s an effective method for visual and kinesthetic learners to process emotions and make them a little more ‘concrete’ rather than abstract.
They also come in a key ring form with a little Velcro mouth; handy for when you’re out and about or the child is away from home.

Have you used a worry monster or a worry letter box?
What methods do you find have been most useful for helping your child to cope with anxiety?

P x

What causes ADHD and how to help a child with ADHD

In this series of articles, we will discuss some of the most common questions parents ask about various additional needs. We’re going to start with ADHD.

ADHD is one of the most common neurodevelopmental disorders of childhood. It is usually first diagnosed in childhood and often lasts into adulthood. Children with ADHD may have trouble paying attention, controlling impulsive behaviors (may act without thinking about what the result will be), or be overly active.

There are three main types of ADHD…

Predominantly Inattentive Presentation: It is hard for the individual to organize or finish a task, to pay attention to details, or to follow instructions or conversations. The person is easily distracted or forgets details of daily routines.

Predominantly Hyperactive-Impulsive Presentation: The person fidgets and talks a lot. It is hard to sit still for long (e.g., for a meal or while doing homework). Smaller children may run, jump or climb constantly. The individual feels restless and has trouble with impulsivity. Someone who is impulsive may interrupt others a lot, grab things from people, or speak at inappropriate times. It is hard for the person to wait their turn or listen to directions. A person with impulsiveness may have more accidents and injuries than others.

Combined Presentation: Symptoms of the above two types are equally present in the person.

Usually a child will be diagnosed with one of these three types, according to the diagnostic criteria in the ICD-10 or DSM-5. However, the latest research shows that there are actually seven different types of ADHD and they all manifest in slightly different ways. To learn more about this, have a look at Dr Amen’s work with SPECT scans: a special kind of scan to see areas of brain activity.

what causes ADHD?

ADHD is caused by a variety of factors including genetics, neurotransmitter levels in the brain and the ‘wiring’ of the brain itself. It is not caused by bad parenting!

Usually a parent or close (male) relative has ADHD. Identical twins 90% chance of both having ADHD; this shows us that there is definitely a strong hereditary cause.

What about the neurotransmitters? What are they?

Neurotransmitters are the body’s ‘chemical messengers’; they pass information from one neuron to another. Two neurotransmitters are either imbalanced or reduced in children who have ADHD. These are noradrenaline and dopamine.

Noradrenaline affects behaviors including our levels of vigilance, arousal, attention, motivation, reward, and also learning and memory.

Dopamine is  involved in reward, motivation, memory, attention and even regulating body movements.

When these two brain chemicals are unbalanced, or not being produced in the right amounts, it causes a lack of concentration, hyperactive behaviour and difficulties controlling impulses.

This is compacted by the way the ‘wiring’ is in the brain of a child with ADHD. On PET and SPECT scans, scientists can see that there is dysfunction in the frontal lobes-the part of the brain that says “hmm, is this a good idea?”- so the children can’t put the brakes on their behaviour

In addition, other areas such as the limbic area are under functioning which means the children are taking in lots more unnecessary information through their eyes and ears but they can’t filter the information. 70% of children with ADHD show ‘markers’ on brain MRIs which show their internal system is dysregulated: they are underactive when they should be busy, but hyper when they should be quiet. They also really struggle to monitor and regulate their behaviour.

All of these things added together obviously make a huge impact on their behaviour and emotions. Imagine how you would feel if you were in your car and had a near-miss. You’d likely have an adrenaline rush- the ‘flight-or-fight’ response- and would feel shaken up. Now imagine feeling like that for most of the day and being asked to sit down and write an essay or do some maths: it’s practically impossible.

Behaviours that parents find most difficult to deal with

What about girls with ADHD?

Girls with ADHD do tend to demonstrate slightly different behaviours and there is still a long way to go in researching why this is the case. However, some of the most commons signs of ADHD in girls are shown in the diagram below:

So how can I help my child?

As in the infographic above, the most effective behavioural treatments for ADHD involve living by routine, rewarding the good and taking a step back from confrontation.

Approximatly 50% of children with ADHD also have a Specific Learning Difficulty such as dyslexia, dyspraxia, slow processing speed or poor working memory. They need routine and structure in order to thrive. Children with ADHD often have mood swings and emotional variability so they need help regulating and expressing their emotions. Additionally, they can be very sensitive and suffer from cripplingly low self-esteem: they are ‘out of kilter’ with their peers, misread social cues and tend be treated as the annoying outcast who won’t calm down and keep up with the group. They put a lot of effort into their school work but achieve little because they are unable to focus and channel their attention. To help them we need to tackle the issues of emotional regulation, sensory processing problems and brain chemistry.

But how do i do that?

We need to make sure they eat and sleep well. Sugar crashes are far more severe in our children and they get ‘hangry’ quickly. They need a diet that helps to balance their noradrenaline and dopamine levels. This includes a protein heavy breakfast- turkey burgers are particularly good, but baked beans, boiled eggs and other sources of protein are excellent choices. Choose brown carbs over white carbs- they have a grounding affect and take longer to break down which means our children don’t suffer such extreme energy crashes. Iron, zinc and magnesium are essential in the production of neurotransmitters so a multivitamin is essential, along with green leafy veg (maybe in a smoothie with some orange juice to aid the iron absorption). Fortified bread and cereal are excellent choices too, along with bananas (which are an excellent source of B6- a vitamin that helps in neurotransmitter function). Zinc can be found in meat products, beans, chickpeas and nuts. A breakfast of baked beans or peanut butter on whole-wheat toast is an ideal way to get the day off to a good start!

Make sure the children are surrounded by positive social support. They may be left out at school, with friends pushing them to the side when they’ve had enough of the mood swings or inattentiveness. This really impacts our children’s mental health so we need to give them plenty of positive social interaction and specific praise from family and friends. They may find it easier to be friends with younger children who are at a similar developmental age.

Children with ADHD are very sensitive to stress and become overwhelmed very quickly. We need to find out what their triggers are, think ahead and plan ahead. Choose which aspect of their behaviour you’d like to work on and stick with just that to begin with. Don’t overwhelm them with lots of changes and punishments. Use a behaviour system such as ‘1,2,3…Magic’. It’s one of the most popular programs and really works well for children with ADHD because it gives them the chance to stop, think and make the right choice. We need to make sure we don’t ask too much of them; don’t expect the impossible. Keep distraction to a minimum as far as possible and have structures in place to help the child. This could be things such as having a place for everything in the home, getting them to count what they need in their school bag, repeating requests back to you. As they get older, organization and note apps are really helpful for them to keep track of their thoughts and their day.

Their body, mind and brain are all sending and receiving mixed signals due to their systemic dysregulation and sensory issues. We need to help their body and mind ‘tune in’ to each other and balance their neurophysiology as far as we are able to. This can be done by using grounding activities, mindfulness, and helping them to recognize what they are feeling. For a younger child, we might ask them to colour in on a picture of a body and point to “where they feel cross” or “where they feel sad”. We could then do some mindful breathing exercises and grounding techniques. Even just 15 minutes of mindfulness per day has been shown phenomenal improvements in attention, working memory, compassion and anxiety reduction. Apps such as Positive Penguins and Molehill Mountain are very effective. Another useful habit to start is journaling and using a diary to monitor their emotions. The one I recommend is the Happy Self Journal; it asks different questions every day and helps the children to process their feelings and events of the day. This is also so useful to us as parents because sometimes our children struggle to express themselves verbally and using the journal allows them the opportunity to share their feelings through writing or drawing.

What about medication?

There are quite a few options for medication in treating ADHD, and all are working towards the same end goal: adjusting the levels of brain chemistry and compensating for the brain wiring problems so that the child can focus. According to Childmind.org, “Stimulants are the best and most common type of medication used to treat ADHD. There are only two stimulant medications, methylphenidate (the active ingredient in Ritalin, Concerta and other formulations) and amphetamine (the active ingredient in Adderall, Vyvanse and other formulations). Both medications are available as short-acting medications and in longer acting preparations.

The two types of medications (methylphenidate and amphetamine) are equally effective and have the same benefits and the same risks. While most people will respond equally well to either medication, there are a few people who respond better to one versus the other. Typically, if you start treatment with one of these medications and it doesn’t work well or is not tolerated, you should probably try the other medication.”

Which books do you recommend?

Always a favourite point to end on, here are some of my favourite books for children with ADHD & their parents.

The Survival Guide for Kids with ADHD

All dogs have ADHD

Thriving with ADHD: Workbook for Kids

Self-Regulation Interventions and Strategies

CBT Toolbox for Children & Adolescents

Understanding ADHD

Understanding Girls with ADHD

The Explosive Child

What do you find most challenging about being a parent of a child with ADHD? Have you noticed if you have ADHD traits yourself, or a diagnosis even? How do you manage your child’s behaviour? I’d love to hear your feedback.

P x

Questions parents ask…about ADHD

In this series of articles, we will discuss some of the most common questions parents ask about various additional needs. We’re going to start with ADHD.

ADHD is one of the most common neurodevelopmental disorders of childhood. It is usually first diagnosed in childhood and often lasts into adulthood. Children with ADHD may have trouble paying attention, controlling impulsive behaviors (may act without thinking about what the result will be), or be overly active.

There are three main types of ADHD…

Predominantly Inattentive Presentation: It is hard for the individual to organize or finish a task, to pay attention to details, or to follow instructions or conversations. The person is easily distracted or forgets details of daily routines.

Predominantly Hyperactive-Impulsive Presentation: The person fidgets and talks a lot. It is hard to sit still for long (e.g., for a meal or while doing homework). Smaller children may run, jump or climb constantly. The individual feels restless and has trouble with impulsivity. Someone who is impulsive may interrupt others a lot, grab things from people, or speak at inappropriate times. It is hard for the person to wait their turn or listen to directions. A person with impulsiveness may have more accidents and injuries than others.

Combined Presentation: Symptoms of the above two types are equally present in the person.

Usually a child will be diagnosed with one of these three types, according to the diagnostic criteria in the ICD-10 or DSM-5. However, the latest research shows that there are actually seven different types of ADHD and they all manifest in slightly different ways. To learn more about this, have a look at Dr Amen’s work with SPECT scans: a special kind of scan to see areas of brain activity.

what causes ADHD?

ADHD is caused by a variety of factors including genetics, neurotransmitter levels in the brain and the ‘wiring’ of the brain itself. It is not caused by bad parenting!

Usually a parent or close (male) relative has ADHD. Identical twins 90% chance of both having ADHD; this shows us that there is definitely a strong hereditary cause.

What about the neurotransmitters? What are they?

Neurotransmitters are the body’s ‘chemical messengers’; they pass information from one neuron to another. Two neurotransmitters are either imbalanced or reduced in children who have ADHD. These are noradrenaline and dopamine.

Noradrenaline affects behaviors including our levels of vigilance, arousal, attention, motivation, reward, and also learning and memory.

Dopamine is  involved in reward, motivation, memory, attention and even regulating body movements.

When these two brain chemicals are unbalanced, or not being produced in the right amounts, it causes a lack of concentration, hyperactive behaviour and difficulties controlling impulses.

This is compacted by the way the ‘wiring’ is in the brain of a child with ADHD. On PET and SPECT scans, scientists can see that there is dysfunction in the frontal lobes-the part of the brain that says “hmm, is this a good idea?”- so the children can’t put the brakes on their behaviour

In addition, other areas such as the limbic area are under functioning which means the children are taking in lots more unnecessary information through their eyes and ears but they can’t filter the information. 70% of children with ADHD show ‘markers’ on brain MRIs which show their internal system is dysregulated: they are underactive when they should be busy, but hyper when they should be quiet. They also really struggle to monitor and regulate their behaviour.

All of these things added together obviously make a huge impact on their behaviour and emotions. Imagine how you would feel if you were in your car and had a near-miss. You’d likely have an adrenaline rush- the ‘flight-or-fight’ response- and would feel shaken up. Now imagine feeling like that for most of the day and being asked to sit down and write an essay or do some maths: it’s practically impossible.

Behaviours that parents find most difficult to deal with

What about girls with ADHD?

Girls with ADHD do tend to demonstrate slightly different behaviours and there is still a long way to go in researching why this is the case. However, some of the most commons signs of ADHD in girls are shown in the diagram below:

So how can I help my child?

As in the infographic above, the most effective behavioural treatments for ADHD involve living by routine, rewarding the good and taking a step back from confrontation.

Approximatly 50% of children with ADHD also have a Specific Learning Difficulty such as dyslexia, dyspraxia, slow processing speed or poor working memory. They need routine and structure in order to thrive. Children with ADHD often have mood swings and emotional variability so they need help regulating and expressing their emotions. Additionally, they can be very sensitive and suffer from cripplingly low self-esteem: they are ‘out of kilter’ with their peers, misread social cues and tend be treated as the annoying outcast who won’t calm down and keep up with the group. They put a lot of effort into their school work but achieve little because they are unable to focus and channel their attention. To help them we need to tackle the issues of emotional regulation, sensory processing problems and brain chemistry.

But how do i do that?

We need to make sure they eat and sleep well. Sugar crashes are far more severe in our children and they get ‘hangry’ quickly. They need a diet that helps to balance their noradrenaline and dopamine levels. This includes a protein heavy breakfast- turkey burgers are particularly good, but baked beans, boiled eggs and other sources of protein are excellent choices. Choose brown carbs over white carbs- they have a grounding affect and take longer to break down which means our children don’t suffer such extreme energy crashes. Iron, zinc and magnesium are essential in the production of neurotransmitters so a multivitamin is essential, along with green leafy veg (maybe in a smoothie with some orange juice to aid the iron absorption). Fortified bread and cereal are excellent choices too, along with bananas (which are an excellent source of B6- a vitamin that helps in neurotransmitter function). Zinc can be found in meat products, beans, chickpeas and nuts. A breakfast of baked beans or peanut butter on whole-wheat toast is an ideal way to get the day off to a good start!

Make sure the children are surrounded by positive social support. They may be left out at school, with friends pushing them to the side when they’ve had enough of the mood swings or inattentiveness. This really impacts our children’s mental health so we need to give them plenty of positive social interaction and specific praise from family and friends. They may find it easier to be friends with younger children who are at a similar developmental age.

Children with ADHD are very sensitive to stress and become overwhelmed very quickly. We need to find out what their triggers are, think ahead and plan ahead. Choose which aspect of their behaviour you’d like to work on and stick with just that to begin with. Don’t overwhelm them with lots of changes and punishments. Use a behaviour system such as ‘1,2,3…Magic’. It’s one of the most popular programs and really works well for children with ADHD because it gives them the chance to stop, think and make the right choice. We need to make sure we don’t ask too much of them; don’t expect the impossible. Keep distraction to a minimum as far as possible and have structures in place to help the child. This could be things such as having a place for everything in the home, getting them to count what they need in their school bag, repeating requests back to you. As they get older, organization and note apps are really helpful for them to keep track of their thoughts and their day.

Their body, mind and brain are all sending and receiving mixed signals due to their systemic dysregulation and sensory issues. We need to help their body and mind ‘tune in’ to each other and balance their neurophysiology as far as we are able to. This can be done by using grounding activities, mindfulness, and helping them to recognize what they are feeling. For a younger child, we might ask them to colour in on a picture of a body and point to “where they feel cross” or “where they feel sad”. We could then do some mindful breathing exercises and grounding techniques. Even just 15 minutes of mindfulness per day has been shown phenomenal improvements in attention, working memory, compassion and anxiety reduction. Apps such as Positive Penguins and Molehill Mountain are very effective. Another useful habit to start is journaling and using a diary to monitor their emotions. The one I recommend is the Happy Self Journal; it asks different questions every day and helps the children to process their feelings and events of the day. This is also so useful to us as parents because sometimes our children struggle to express themselves verbally and using the journal allows them the opportunity to share their feelings through writing or drawing.

What about medication?

There are quite a few options for medication in treating ADHD, and all are working towards the same end goal: adjusting the levels of brain chemistry and compensating for the brain wiring problems so that the child can focus. According to Childmind.org, “Stimulants are the best and most common type of medication used to treat ADHD. There are only two stimulant medications, methylphenidate (the active ingredient in Ritalin, Concerta and other formulations) and amphetamine (the active ingredient in Adderall, Vyvanse and other formulations). Both medications are available as short-acting medications and in longer acting preparations.

The two types of medications (methylphenidate and amphetamine) are equally effective and have the same benefits and the same risks. While most people will respond equally well to either medication, there are a few people who respond better to one versus the other. Typically, if you start treatment with one of these medications and it doesn’t work well or is not tolerated, you should probably try the other medication.”

Which books do you recommend?

Always a favourite point to end on, here are some of my favourite books for children with ADHD & their parents.

The Survival Guide for Kids with ADHD

All dogs have ADHD

Thriving with ADHD: Workbook for Kids

Self-Regulation Interventions and Strategies

CBT Toolbox for Children & Adolescents

Understanding ADHD

Understanding Girls with ADHD

The Explosive Child

What do you find most challenging about being a parent of a child with ADHD? Have you noticed if you have ADHD traits yourself, or a diagnosis even? How do you manage your child’s behaviour? I’d love to hear your feedback.

P x

SEN Resources: Visual Aids

Visual aids are a marvelous way to help children with additional needs. Many children are visual learners, and children who struggle with sensory overload find verbal prompts or reminders difficult to understand when they already have so much information being processed. A visual aid helps them to focus, to understand what is happening next, which behaviours are required of them and also allows them the opportunity to express what they are feeling or to ask for something they need.

This blog post is going to discuss various forms of visual aids which can be used to support learning, to help with routines and to aid children in expressing themselves.

Now, Next & Then Boards

These are particularly useful in supporting children who have autism or learning difficulties. The boards explain clearly what is happening now and in the near future. This can help to settle anxiety and help the child to understand that they need to, for example, wash their hands before having their lunch.

Visual Timetable

Visual timetables are an effective way for children to see exactly what is happening that day, or to help them develop independence in their daily routines (such as getting dressed). These can be used in class and also at home. They are particularly useful for days out or when there is a change in routine. Some visual timetables have each activity attached with Velcro so once the activity is finished, it is removed from the timetable. This helps to keep things simple and gives the child a visual reminder of how many activities are left to be completed.

As a child gets older, they may prefer not to use pictures or symbols as part of their timetable. Checklists are a useful transition tool and way for them to become more independent with appropriate support tools.

Emotional regulation & expression

Some children (particularly those on the autistic spectrum) may find it hard to express or recognize the feelings they are having. Most children with autism also struggle to understand facial expressions so visual aids are an important way for them to learn what other people are feeling and also for them to demonstrate what emotions they are experiencing.

Behaviour reminders

These are useful to have when out and about or in the classroom. The reminders can be kept on a keychain or lanyard, or in a pocket; anywhere easily accessable. They can be used to remind the child of which behaviours are ‘expected’ (such as standing nicely in a queue at the supermarket) and also contain other communication cards for the child to use when they are too overwhelmed to use verbal communication.

PECS (Picture Exchange Communication System)

PECS is a widely used communication system.

“The Picture Exchange Communication System, or PECS, allows people with little or no communication abilities to communicate using pictures. People using PECS are taught to approach another person and give them a picture of a desired item in exchange for that item. By doing so, the person is able to initiate communication. A child or adult with autism can use PECS to communicate a request, a thought, or anything that can reasonably be displayed or symbolized on a picture card. PECS works well in the home or in the classroom.  PECS was developed in 1984 by Lori Frost, MS, CCC/SLP and Dr. Andrew Bondy. It was first used at the Delaware Autistic Program. The goal of (PECS) is to teach children with autism a fast, self-initiating, functional communication system. PECS begins with the exchange of simple icons but rapidly builds “sentence” structure.” The National Autism Resources.com website

How to help our special needs children: Using Visual Aids

Visual aids are a marvelous way to help children with additional needs. Many children are visual learners, and children who struggle with sensory overload find verbal prompts or reminders difficult to understand when they already have so much information being processed. A visual aid helps them to focus, to understand what is happening next, which behaviours are required of them and also allows them the opportunity to express what they are feeling or to ask for something they need.

This blog post is going to discuss various forms of visual aids which can be used to support learning, to help with routines and to aid children in expressing themselves.

Now, Next & Then Boards

These are particularly useful in supporting children who have autism or learning difficulties. The boards explain clearly what is happening now and in the near future. This can help to settle anxiety and help the child to understand that they need to, for example, wash their hands before having their lunch.

Visual Timetable

Visual timetables are an effective way for children to see exactly what is happening that day, or to help them develop independence in their daily routines (such as getting dressed). These can be used in class and also at home. They are particularly useful for days out or when there is a change in routine. Some visual timetables have each activity attached with Velcro so once the activity is finished, it is removed from the timetable. This helps to keep things simple and gives the child a visual reminder of how many activities are left to be completed.

As a child gets older, they may prefer not to use pictures or symbols as part of their timetable. Checklists are a useful transition tool and way for them to become more independent with appropriate support tools.

Emotional regulation & expression

Some children (particularly those on the autistic spectrum) may find it hard to express or recognize the feelings they are having. Most children with autism also struggle to understand facial expressions so visual aids are an important way for them to learn what other people are feeling and also for them to demonstrate what emotions they are experiencing.

Behaviour reminders

These are useful to have when out and about or in the classroom. The reminders can be kept on a keychain or lanyard, or in a pocket; anywhere easily accessable. They can be used to remind the child of which behaviours are ‘expected’ (such as standing nicely in a queue at the supermarket) and also contain other communication cards for the child to use when they are too overwhelmed to use verbal communication.

PECS (Picture Exchange Communication System)

PECS is a widely used communication system.

“The Picture Exchange Communication System, or PECS, allows people with little or no communication abilities to communicate using pictures. People using PECS are taught to approach another person and give them a picture of a desired item in exchange for that item. By doing so, the person is able to initiate communication. A child or adult with autism can use PECS to communicate a request, a thought, or anything that can reasonably be displayed or symbolized on a picture card. PECS works well in the home or in the classroom.  PECS was developed in 1984 by Lori Frost, MS, CCC/SLP and Dr. Andrew Bondy. It was first used at the Delaware Autistic Program. The goal of (PECS) is to teach children with autism a fast, self-initiating, functional communication system. PECS begins with the exchange of simple icons but rapidly builds “sentence” structure.” The National Autism Resources.com website

What’s his super power?

Believe it or not, parents of autistic children get asked this a lot.

It’s hard to know how to reply, because if a person is genuinely curious, it’s nice to encourage dialogue, but they may be disappointed with the answer of “He takes 17 minutes to put on a shoe” or “She is adept at smearing poo”. I don’t think that’s the answer they would be expecting to be honest.

There is still the notion that if a child has a diagnosis of autism, they must have an incredibly high IQ or be a musical / mathematical / artistic prodigy.

It is true a proportion of people with autism are ‘savants’, that is, they are individuals with autism who have extraordinary skills not exhibited by most persons” (Autism Research Institute, 2017). However, this figure is thought to be in the region of 10%. Films like Rainman and Mercury Rising , while bringing attention to the wonderful abilities some children may have, can give people the inaccurate view that all our children are prodigies. This can be really disheartening for those of us who view trying on a different colour top as a real accomplishment. For the child who struggles with leaving the house, something as simple as going to the letter box is something worth celebrating.

Please try to remember that if you’ve met one child with autism, you have met only one child with autism.

It is a spectrum, with an amazing variation of permutations, differences and similarities.

By all means, celebrate the genius and the savants but don’t forget to commend the little boy who managed to make fleeting eye contact when he said ‘Hello’ today. And do marvel with me at the ability to make putting shoes on last nearly half an hour. All of our children are superheroes in their own special ways.

How many times have you been asked that question, and what’s your favourite response?

References

Edelston, Stephen M. ,2017, Autistic Savants, Autism Research Institute. https://www.autism.com/understanding_savants

© Peta Slaney, 2020, All Rights Reserved.

Introduction to Sensory Processing

Many children with autism struggle with sensory processing. As shown in a previous article, sensory issues are now part of the diagnostic criteria.

Our senses affect how we respond to the world around us. Many children are either over-sensitive (hyper) or under-sensitive (hypo) and it can be tricky for them to cope with their reactions to what is going on around them.

Below are some examples of different issues that our children may have and just a few tips on how to help them. This is an extensive subject with many research projects underway, so there will be more in depth articles to follow.

  • Taste

Some children may need to sniff their food before tasting it, or they may have a preference for very bland flavours. Similarly, they may prefer textures that are only crunchy, dry, or liquid or they might love spicy food. Trying new foods can be really challenging. My son declared that he hates kiwi fruit and it’s the worst thing in the world; he’s never tried it but he wanted to make sure he didn’t have to. When he did try it later, he decided that he loved it. I still can’t persuade him to try anything that looks too wet or ‘slimy’ (as he puts it).

How To Help: Offer the child a small amount, but don’t force it. If your child has a preference for certain textures or flavours, try to introduce similar items to their diet so it is balanced and healthy.

  • Sound

I’ve found that for most children and adults that I’ve worked with noise is a big trigger for negative behaviour. Many autistic people are sensitive to certain noises or pitches. Sudden noises, such as a police car or fire alarm, can be really distressing. In addition, areas with a lot of background noise- such as a busy cafe or supermarket can cause a build up in anxiety.

How To Help: Ear defenders are a good option and available in many colours and sizes. Alternatively, having an iPod or MP3 player handy when out and about can give the child something auditory to focus on and block out the rest of the noise.

  • Touch

This can be pressure on the body, the feel of clothes, physical contact with other people like hugging or holding hands, brushing teeth, getting their face wet, or experiencing pain. Some of our children may be hypo (under) sensitive to pain or temperature, whilst others may really struggle with something as (apparently) simple as a hug.

How To Help: For a child that is over-sensitive to touch, a verbal or visual warning may be needed. Don’t force the child to hug/cuddle/touch something if they find it too distressing as this could only exacerbate the issues.

For a child that is under-sensitive, then they may like a weighted jacket or blanket, or deep pressure massage.

  • Vision

Children with autism are predominantly visual learners. This means that they take in a lot of information through what they can see. Some colours or sights may be distressing or overstimulating. They may struggle with bright sunshine or the flickering of a strobe light.

How To Help: Sunglasses and window shades in the car- these have been a lifesaver for me and avoided many a meltdown due to the sun being “too shiny”. Try to keep bedroom walls clear of clutter and posters, this will help the child to be settled at bedtime rather than visually over-stimulated.

  • Smell

Smell can be a particularly emotive sense for many people and children with autism are no different. Some scents may be preferred and a source of comfort,  whereas a change in washing powder or air freshener can be very upsetting.

How To Help: Introduce new scents slowly. If a change in behaviour is noticed as a response to a certain smell, it may be best to avoid it.

  • Proprioception

This is basically our sense of position and movement. It’s something that many children with autism and ADHD struggle with as their sense of spatial awareness and connection with their own body can be a bit disjointed. This may manifest as clumsiness and issues with personal space.

  • Vestibular

This ties in very closely with proprioception in that it affects spatial awareness but also incorporates balance. Again, it can manifest as clumsiness or a child who spins or swings quite vigorously in order to get some sensory feedback from that sensation.

How To Help: Sensory circuits and physiotherapy exercises can really make a difference with these issues. There will be a guide to sensory circuits on the website in a few weeks, as it is such an effective way to help with behaviour due to sensory imbalances.

Occupational therapy and physiotherapy can help the child to master their fine motor control and strengthen their core. An occupational therapy assessment would be the first port of call to assess which difficulties the child has and how to help them individually. 

As I said before, this is just a brief introduction to sensory issues and there are more in depth articles on the way. In the meantime, please feel free to e-mail me for advice or further information.

© Peta Slaney, 2020, All Rights Reserved.

Tips for claiming DLA

It’s one of the questions I get asked a lot : “Is it worth applying? What if they turn me down? What if I say the wrong thing?”

Well, the worst ‘they’ (The DWP) can say is ‘No’. So give it a go. DLA (disability living allowance) is there for us to help our children and make a difference to their lives; for some of us, that might mean paying for private speech therapy sessions, or sensory toys; for others, it might mean running the family car. It is a provision that is there for us so there’s no harm in applying.

Here’s a few tips to help:

  • Request the application form over the phone. That way, it will be backdated to when you made the phone call (as long as you send it back within six weeks). Otherwise, it will be dated from when they receive the form.
  • Don’t expect the decision maker to know anything about autism or other special needs. Chances are, they don’t. Write an idiot-proof guide to your child’s difficulties and additional needs. Use key phrases such as “This is more support than another child of Adam’s age would need” or “This is far greater than the care needs of  a typical nine-year old”. They have to see there is a difference and the needs are additional in order to award DLA.
  • Describe your child’s worst days. This is stated on the form but many parents don’t want to ‘over-exaggerate’ their child’s needs. Believe me; you are not exaggerating- you are used to coping with additional needs. There’s also the space provided to say how often your child has a ‘bad day’; you might want to use phrases such as “5 out of 7 days, Kieran is unable to dress himself without verbal prompting and reminders.” This gives the decision makers a clearer picture.
  • Include all the relevant paperwork. It probably may not be read, but have it there. Include a massive bundle to show that you’re not just chancing your arm, that this is a real child with real needs.
  • Photocopy your form and your evidence before you send it. Just in case it gets lost and you have to do it all over again.
  • Send it recorded delivery. Yes, there’s a free postage envelope, and yes, most of us are on a budget but better to be safe than sorry.
  • Ask for help. Speak to someone at your child’s school or nursery who can help you fill it in if you are struggling or e-mail me/ special needs support groups/ local children’s centre / citizen’s advice bureau/ national autistic society.
  • Keep a diary of your child’s behavior. Send that in with the form and the evidence; it gives the decision maker a better idea of the challenges our children face.

Remember, you are doing this for a good reason: you are trying to help your child and give them the best support you can.

Have you had success or hassle trying to claim DLA? Let me know in the comments or PM me.

Further information and advice:

National Autistic Society

GOV.UK Disability Helpline

Citizen’s Advice Bureau- DLA information

© Peta Slaney, 2020, All Rights Reserved.