Teaching children emotional intelligence – the ability to recognise and understand emotions

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Not going to school

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Autistic Spectrum Disorder and you

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Managing challenging behaviour

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Gratitude

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The Bugaboo Donkey2 – Duo

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“Muddle” Puddles – Another update

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Bump to Baby #2 – Four weeks!

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Teaching children emotional intelligence – the ability to recognise and understand emotions

Posted on 16th October 2019
Happy and Sad cards

Teaching a child about to understand their emotions is a challenging task, when it comes to a child with autism the struggle can be even harder. Learning to recognise and regulate emotions is not easy. In fact as an adult we are constantly adjusting ourselves so our expectations of children should be set lower. You might wonder where you begin. I am sure there are many different methods I wanted to share with you what has worked for us.

The Basics – where to start with emotions

You can start with two basic emotions, Happy and Sad. With Ariella we were struggling badly with communication and understanding which then was leading into challenging behaviour. On recommendation of A’s private occupational therapist at the time, we were introduced to a red and green card visual.

Red and Green – Feelings cards

The plan was that both us and nursery would use a consistent approach. When we saw that A was sad (or a variant of that emotion like angry) we would show the red card and say “A is feeling red, sad/angry”. We would then ask her to try and calm herself down and let us know when she was ready to play again and “Go Green”.

You can use this same approach with your child to introduce basic emotions, green – OK/Happy and red – stop/sad.

In Ariella’s case we waited until she had calmed down and showed her the green visual and said “Are you ready to go green? Happy?”, or “Are you ready to play again?”. It took a very short time before she had picked up this system and was able to say “A is RED”. I knew she had great capacity to memorise visual content but I was astounded to hear her using it in context the very next day.

It might take longer for your child, you might have to adapt the wording that you decide to use depending on their personality and their abilities. However It is a great way of starting off understand of very basic emotion. It was the very early journey of learning emotional intelligence and from which we have been able to expand.

Example cards

You can download a copy of the red and green card here. You can print them and bind them, it’s worth carrying them around with you so that they can be used at every opportunity.

ASD Happy and sad (red and green) visual cardsDownload

Expanding on the basics – other emotions

Rather than moving straight onto new emotions we focused on self regulation, it would be much more motivating and practically useful for A to recognise her emotion is “Red” and know that she can bring herself back to “Green”. To do this we started with another suggestion from A’s therapist, using a wheel. With this A understood the benefit of being able to identify her emotions for both of us.

The wheel has been quite good as it starts to expand on the middle ground between happy and sad but is still very simple. You can apply this method with your own child too!

Early years – self regulation wheel

Emotional self regulation wheel

You can start with a simple wheel, red to green. I’ve created a template which you can print off below, I recommend you laminate the sheet and the arrow and use some paper fasteners to attach the arrow.

It may take some time for your child to pickup on this approach but once the first basic emotions are locked down it should be easier to introduce and expand on these.

ASD Early years emotions wheelDownload

Self regulation actions for young children

To compliment this I would recommended self regulation calming actions which you can download here. These help suggest actions that your child can do to calm down, it’s easy to tell a child to calm however offering practical solutions that they can do alone shows how to actually achieve this.

Self calming action card – BoyDownload
Self calming action card – GirlDownload

I recommend you print and laminate this red action card which you can use with the wheel/gauge. You can say “A you are feeling red/sad/angry, what can we do to calm down?” and list each action explaining. I use these when A is very upset and past the point of verbal communication still now, regardless that she knows how to do each of these the prompt is often enough to remind her to self regulate. When they have calmed down you can move the gauge/wheel to green again.

If you have an older child whom has mastered this skill already then moving on to a mindfulness app like Calm for children would be useful. It is supported on both iOS and Android devices and offers some lovely calming stories, meditation and sleep methods.

Calm

Image result for calm logo

iOS & Android

“Calm is the leading app for meditation and sleep. Join the millions experiencing lower stress, less anxiety, and more restful sleep with our guided meditations, Sleep Stories, breathing programs, masterclasses, and relaxing music. Recommended by top psychologists, therapists, and mental health experts.”

The downside is there is a subscription for the service but I use this app myself and I find it very valuable.

The Calm App screenshot

Exploring other emotions

Introducing new ideas and new information has to be highly motivating, over the last year we have noticed that A has quite an interest in photos of herself. She enjoys cause and effect also, we wanted to combine both of these things together in a way that could be used to help her learn what her face looks like when she is feeling different emotions.

We decided to use our phones but you could use a mirror. Our iPhone has the ability to map your face to Emoji’s, A will sit and do this for a long time. We can model what faces look like and describe the emotion when asked “Can you show me happy?” and so on it helps her learn that this is a happy face.

Introducing dramatherapy

Recently A has begun dipping her toes into dramatherapy, if you have yet to come across this branch of therapy it is defined as…

Dramatherapy is a type of psychotherapy using the art forms of drama and theatre. It is one of the Creative Arts Therapies which include, art, music, drama and dance/movement. … Dramatherapy sessions offer a space to express feelings and enhance spontaneity using various methods including play, storytelling and movement.

http://www.dramatherapist.net/what-is-dramatherapy

In short sessions are the perfect place for A to express her thoughts 1:1 with a trained therapist, to give you an example. Throughout the week we might have a worrying situation pop up for A, a new fear or a happy situation that becomes quite fixed in her mind.

These sessions allow her to explore and talk about that incident. An example, when a fire alarm went off while she was at nursery and she was very distressed. We can relay this prior to the therapy session directly to the therapist and they can bring up this memory and coordinate their props.

Visualising the internal

During this particular session A was able to draw the scene, which is the first time we’ve seen such a descriptive image produced. Usually her art is quite abstract, she was able to label that the “dots” were the noise of the alarm and describe how she felt.

You could explore emotions through art with your child, it doesn’t have to be in a professional setting but I do think it has been helpful to build a safe relationship outside of the family to discuss emotional wellbeing.

A's drama therapy drawing

It’s useful to talk around these incidents so that positive reinforcement can be built in, another example working on balloons. A was quite frightened of balloons due to a popping memory at a party last year, since a therapy session and discussing this with balloons – playing with them and seeing that they can be fun and that popping is okay. A’s favourite item this week is her balloon which she took home from therapy.

Hopefully you can see how this therapy is rather beneficial in exploring situations that occur and how the child feels in that situation. However to do this they need to understand and be able to link emotions to events, so you might now be wondering other than the emoji face mapping how else did we achieve this?

How are you today visuals

Emotion visuals girl

We have a visual “How are you feeling today” chart which I’ve created my own version of you here. You can download it if you need for your own uses, print, laminate and buy sticky velcro (both sides). One side attaches to the chart and the other to the visuals.

You’ll need to cut around each visual feeling/emotion. I think this is really helpful up on the fridge, you could add some sticky magnets to the back of your chart to do this or just use any kind of sticky tac.

How are you feeling? chartDownload
Visual feelings – GirlDownload
Visual feelings – BoyDownload
Emotions visuals for Boys
Feelings book

I hope that all of the above will help you begin to discuss and make emotions part of your daily discussions. If your child enjoys reading or looking at books there are some wonderful options, How are you feeling today? by Molly Potty and for an older child Feelings by Libby Walden.

Social Stories

In addition to books and visuals you can also make your own social stories, the more custom made the better. As an example when we were experience some aggressive outburst or an increase in hitting, biting others we introduced a social story about biting.

Within the story it showed a person biting and how each person felt about it as well as the impact of that action, it is a good way of showing children that their actions have an effect on others.

Many books have social stories written into them to help all children understand this, we also used “Hands are not for hitting” book which worked very well for A. They have a “Teeth are not for biting” also but I have not checked this one through.

These books explain to children all the ways in which they can use their teeth or their hands while discussing the emotional impact of their actions, we have found this really effective.

If you need help creating visuals then you can check out my blog post here and if you are interested in ways to manage challenging behaviour you can also check out my post here.

I really hope that the above helps you navigate emotions with your child, as ever please do let me know your thoughts!

Being Mum Lifestyle Parenting Seasons Special Needs Summer Weekly Update

Summer of fun

Posted on 21st September 2019

If I level with you, before this Summer I can’t recall the last “school” holiday that we made it through without some physical representation of frustration. Whether that be bites, scratches or bruises from items thrown the holidays were out of routine and they were fundamentally a stressful period for everyone. I had noticed that some of the happiest times we were when would go on holiday together, with friends, family the more adults the better.

Prior to the Summer I attended an autism workshop for parents which was most helpful and compounded some of the ideas that I had already read about, one of the key elements for me was confirmation in my analytical mind. I spend a lot of time trying to decipher behaviour to make up for the lack of communication between us and A. The more you look the more you begin to see patterns, usually challenging behaviour has a cause whether that’s one that can be rectified or not is another matter. One of the big flags for me always behaviour would decline when there was only one adult and A had to share attention. Probably not that unsurprising for many children and a trait I’m hoping over time will improve but alas here we are.

Finally admitting that nothing else we were putting in place was making a difference to the holiday periods we decided to employ a nanny. What a difference, affirmation of what I had suspected all along. The difference is so apparent that I now have a changed child, one who is enjoying her childhood in the most part and is happy. Once where holidays were times in which we couldn’t go outside because as soon as A had access to any other children she would hit and push them down, refuse the go outside but finally with just increasing that adult 1:1 ratio those behaviours have reduced. Where we might have had a meltdown seven times a day now it may be once a week or less. Unbelievable, right?

Like a child in a candy store after a few days inside while everyone got to grips with each other I planned to go out most days and filled our Summer schedule completely. So with that, this is what we got up to this Summer!

West Wittering – Over the Summer we visited the beach, a few times which is always a calm place. Both children are always very happy when they are near the ocean. S is at that age in which he is exploring all the senses, I’ll be quite pleased when we pass the eating sand phase however!
West Wittering Beach – A love of Kites was ignited watching one fly, following this we bought our own butterfly kite.
Alice Holt – Alice Holt have renovated some of their playground
Holloway Hill Park, Surrey – Many days were spent at various different parks, where before we might spend half an hour max with the new setup we could spend hours outside.
Woking Park – I really don’t know how we missed this one up until now, what a glorious park. Mostly wooden, lots of landscaping to give interest. It’s a very pretty space and has some excellent water play.
Woking Park
Woking Park
Magnetic Tiles – I’ve had these in my Amazon basket for as long as I can remember after seeing them on Fridabemighty, brilliant for hyper mobile hands.
Ariella had her first bowling experience over the Summer, despite the loud environment she really enjoyed herself. Fingers in ears a lot!
On a rainy weekend we took a trip to a beautiful toy shop
An epic crafting session, lots of paints, lots of crafting, lots of children.
Bird World – Sebastian went on a trip to Bird World
We took a trip down to Brighton’s aquarium, I think I prefer London but it was less busy and we visited a local gluten free fish and chip place for lunch called the Wolfies of Hove. Yum yum!
A new section in the aquarium. If we had one of those at home I think Ariella would never leave it. It projects the rolling waves of the ocean on the ground. Amazing.
Cotswolds Glamping – The children loved it, me less so. But it was an experience!
The last day of Holiday – Feeding the ducks

Phew, if you made it down here congratulations. We also visited Marwell Zoo, had plenty of hospital appointments, assessments, therapy, soft play and parks. All in the very last day of the holidays I was sad that our long, slow days were drawing to an end. It was refreshing to leave drop off and pick up behind, to work to our own rhythm and learn through play. Goodbye Summer, hello Autumn – next to plan half term!

Special Needs

Extraordinary you

Posted on 18th September 2019

It was a Friday afternoon and we were packing up our things to head out on a long trip glamping with friends in the Cotswolds. We were waiting for a delivery to arrive before setting out which we needed to take with us, a delivery of gluten free bread rolls. If you ever need good gluten free bakery items then (no sponsorship here) I really recommend you try out the Wheat Free bakery because it’s been our saving grace a fair few times now.

Before the bread rolls arrived another letter fell through the letter box onto the floor, you can always tell when it’s an NHS letter by the envelopes they use and the stamping that is place on them. This one was from a London hospital which immediately got my attention, I always suspect that letters from this hospital might be updates for the 100,000 genome project which we entered into as our last real hope of a diagnosis for Ariella with current methods. As I opened it and read the letter finally that day had come.

I rarely can recall moments in my life that do two things, firstly time slows down. That so rarely happens to me ever, this is definitely one of those moments which I was able to think about a billion thoughts in the seconds it took to read the first sentence telling me it was the results. Time genuinely feels like it slowed down. Secondly I knew it would be a turning point, that it would be a day that I remember forever and would change us one way or the other as a family no matter what the results were. If they diagnosed her with a condition then we would finally get that illumination of her potential future, how or why it happened which would be amazing but also potentially terrifying. Or they give us no diagnosis and we would have to accept that we had hit a dead end and most likely become comfortable with the unknown for a very long time but at least know that we had ruled out a huge amount of other diagnosis.

As I read down It said “no clear cause of the condition in the family has been identified” and I felt this crushing hopelessness. We all still agree it’s clearly genetic, clearly but she is so rare, so extraordinary that science doesn’t know why life is so much harder for her than her brother. While one of the many benefits of being part of this project means they will continue to keep us updated should they ever put the pieces together to find the needle in a haystack, they’ll let us know. I am really glad that we have ruled out so many other conditions, for now being a SWAN (syndrome without a name) will just have to do!

Being Mum Featured Lifestyle Parenting Special Needs

Not going to school

Posted on 17th September 2019

I picture this little blonde haired girl, hiding under a teepee playing with her teddy bears. She’s having a tea party and Mr Bear has taken all of the cake leaving not even a crumble for everyone else. Every item in your room has been given a different purpose far from the obvious and your imagination is rife in a way that most adults forget to be.

One day you come dancing into the room sheer joy on your face, round and round on tips toes like I did in the background of the kitchen growing up while my mother cooked. Always moving, elegantly from place to place and without any purposeful thought.

In September you’ll put your school uniform on and walk alongside your friends, excited and worried in equal measure about your new adventure. I would be so surprised how quickly you’ve grown, how fast time has gone. I’d wave alongside the other mothers at the gate knowing you were moving on to a new chapter with your peers, making friends and living life.

The girl above lives only in my mind, I think I created her long before I ever had children and she is full of preconceived ideas about parenting and how my children might be. I think mostly she is made of my own experiences reflected back perhaps manufactured during my childhood while pretending to play families as a child. You don’t exist, so let’s move forward.

School, when you fall out of sync

“True happiness is to enjoy the present, without anxious dependence upon the future, not to amuse ourselves with either hopes or fears but to rest satisfied with what we have, which is sufficient, for he that is so wants nothing. The greatest blessings of mankind are within us and within our reach. A wise man is content with his lot, whatever it may be, without wishing for what he has not.” 
― Seneca

As we currently have a legal appeal ongoing I can’t discuss the schooling situation in specific detail, but what I can say is that we are truly out of sync. Not just with the mainstream but even the specialist, Ariella is back at nursery for now but her future remains unclear from January. It is not a process that I take kindly to, we were given mere weeks of warning at the end of term in July sitting until that point with uncertainty. I think to apply even more uncertainty to the life and families of children who live with the ultimate uncertainty of an unknown condition is “not good” (as Ariella would say). It’s taken a while for me to accept that perhaps we care the most about Ariella’s future and that perhaps others care a lot less than I might expect them to – a sad state of our educational system. I am thankful for all the practice that Ariella has given me to be able to sit in the unknown and accept we are here, that there is nothing we can do to change it and to make the very best of whatever situation befalls you.

School is one of the most asked questions that I get asked right now, my hopes for Ariella are that she is happy and given access to school which does not limit her or dull her personality. She is creative and interesting, over the Summer holiday period which were much improved to previous holidays (which I will talk more about in a separate post) she learnt to count to 100. It took her mere days to do this and I know that is unusual, all we are really asking is for Ariella to attend a school in which she can explore on her strengths and is not limited by the school curriculum. Art, music and numbers all being things she really has a keen interest in but in an environment which is suitable for her and understands autism. I believe I have found a school that would facilitate this in Sept 2020 but it unfortunately is not quite that simple.

It was a difficult week seeing all Ariella’s peers start at school, I was very happy for the children moving onto their next stage in life. It does feel a little like ground hog day! It sits alongside watching others hold their heads first, learn to sit, learn to walk, learn to speak. School feels like one of those large milestones for childhood. Another aspect to consider for children who attend specialist settings there isn’t the same playground pickup/drop off vibe. Most of the children are transported in, their parents don’t get to see the school on a day to day basis or say hello to other parents. I think this alone puts you at a disadvantage, I know in my mind part of being a parent is standing out in the rain, sun, wind or snow waiting for your child to come out – bag, jumper thrown over the shoulder.

For now we have the Autumn term as our “fixed plan”, Ariella has a confirmed future for the moment up until Christmas and our court hearing is in October. We will make the most of it and hope that things can continue to be a settled and calm for Ariella’s possible in 2020.

Arts & Crafts Special Needs

Where to start with visuals

Posted on 4th June 2019

When we first started adding visuals into our home I found the process was quite overwhelming and time consuming. I was rather resistant to starting the process and at first it didn’t seem like they were helping much, but I was very mistaken about that. Now that our weekly rhythm during term time is mostly the same I do not have to always use visuals with Ariella, she has memorised the day and I can use them during days that change, on weekends or if I want to communicate something to her while distressed. When she is particularly unwell or struggling it’s good to revert back to a form of communication which helps her understand and we benefit overall as a family despite the extra work initially.

I think to start with it’s worth investing in a few pieces of equipment and if that’s not possible then borrowing at least a laminator would save you a lot of money in the long term. With all the resources at home to create your own visuals a large portion of the hard work is done and it is a little easier to be proactive on the fly to prepare yourself for some outing the next day. I have definitely sat in the late evening laminating resources that I should have prioritised weeks ago.

Where do I start?

If you think visuals might be able to benefit your child then I would recommend you start with gathering the following items:

  • A laminator – you can buy one of these from Amazon online and store it simply in your home. They do not take up a lot of space and can be quite reasonably priced. This is the laminator that I have chosen to purchase, the Text A4 from Amazon.co.uk.
  • Laminating pouches – whether you decide to purchase a laminator or borrow one these will be crucial and again it’s worth having a good stack stored. Just be sure to purchase ones that match the paper size of your laminator, I picked these H&S pouches from Amazon.co.uk
  • A printer – you don’t need one of these but unless you want to be wandering out to use a public printing service or happen to have resources already printed then it’s very convenient
  • Velcro both sides – you’ll need some method of sticking the visuals and my preference is Velcro. You can buy this online too just make sure your reels have both the fluffy and the scratchy sides together as you’ll need both.
  • Card – white card is preferable, to print onto but if you want to make coloured pieces that’s okay too.
  • Blutac – you’ll need something to stick them up on the wall with and I found this the most useful. It does seem to leave marks on the wall so if you prefer something else then use that but be mindful about where you want to store and utilise your visuals.
  • Scissors – you will need a good pair of scissors to cut out your laminated cards.
  • A hole punch – if you want to put your visuals on a little ring then you’ll need one of these to make holes. It’s a good thing to have anything as so many visuals benefit from having some kind of string based attachment for ease.

Making visuals

My journey of accepting visuals into our daily life started with a very kind hospital nurse who made a visual timeline for Ariella to use in hospital. It followed a very traumatic period and Ariella’s anxiety in hospital was rife. I was skeptical about the benefits of using visuals when she could understand verbally my requests but in times of anxiety having the visual instructions and understanding what to expect has greatly helped her overcome her fears.

I would start with a website called Twinkl, used by many teachers and it’s a great resource for free visuals. I would start with downloading this free pack of visuals for home which you can print and then laminate.

  • I would start with downloading this free pack of visuals for home which you can print using your printer or borrowing a printer.
  • Once printed take your laminator and laminator the entire sheets using laminator pouches.
  • Cut around each card leaving a little edging.
  • Cut small sections of velcro and stick to the back side of cards.

Using the visuals

Next you need somewhere to use these newly created visual cards, you can make an easy visual timeline to adhere these too by following these steps:

  • Using a sheet of A4 card cut out long strips of card, preferably white or yellow. Use a colour that is non offensive to your child. Make sure they are wide enough to fit the visuals onto in a line left to right.
  • Place the long strips into a laminator pouch and laminate them
  • Cut around the laminated card strips leaving a small edge to keep them sealed in.
  • Using tape stick the pieces of laminated card strips together, you can make as long as required.
  • Take the other side of the velcro, opposite to whichever you have used to velcro the card and stick a long line of this in the middle of the laminated card strips.
  • You can now stick this up on the wall, either from left to right or you can use from top to bottom depending on how your child prefers to read a visual timeline.

After some time you may find storing the visuals can be difficult, for a long time I had all the cards on little ring binder rings but we have recently improved to a much more sensible storage method. After attending a workshop with Lets Talk Visuals our visuals are now stored in a folder like below which was kindly made for us. It allows Ariella to find the visuals herself and Bing is a highly motivating interest of her’s at present.

It is really beneficial to use motivating subjects with children who have additional needs or ASD, it engages their interest, lowers their anxiety and you are more likely to get a more positive response. I have found that Ariella immediately took to this new method of storing our visuals and I have now received some new toilet visuals which I aim to introduced this coming Summer. Our first attempt at toilet training didn’t quite work out as planned, so I look forward to showing you these soon!

I also used to use a smaller timeline strip for carrying visuals out and about, using a typical now and next approach. To replace this Lets Talk Visuals has created a folding timeline which works much better for storage as you can see. Ariella has a wonderful memory so I wanted up to five tasks, but you could request just three or whatever you feel is appropriate. If I feel Ariella is struggling with transitions I can fold down 4 & 5 showing her just 1, 2 and 3. I modified it slightly and place velcro on the back to store my visuals for the day so I have everything I need. It’s also tailored to be highly motivating to Ariella with Bing characters. I would highly recommend you go check out Let’s Talk Visuals if you are finding the process of moving to visuals daunting.

Now and next, expanded to five options due to A’s memory. Folding and portable for my bag, I’ve added velcro to the back so I can stick visuals for storage also.

Now that you know how to make some basic visuals I’ll be expanding on this further in future blog posts, we use visuals in a variety of ways. Some of the current methods are for toilet training, teaching emotions and learning early years self regulation. If these are some topics that are you are interested in hearing more about check back soon or like me on Facebook for instant updates for future blog posts.

Featured Lifestyle Weekly Update

Autistic Spectrum Disorder and you

Posted on 8th April 2019

A day before Ariella’s fourth birthday and one day after Autism awareness week has ended Ariella was diagnosed with Autistic Spectrum Disorder (ASD). We assumed that it was likely to be the case but knowing it is very definitive and I feel very at peace today. Up until now I have tried my best to describe the behaviours, the difference in the way A thinks and communicates without having the right words. I would often say “I think she’s autistic” or use all the descriptive phrases but what we really lacked was the support to know what is coming ahead. It probably sounds crazy but we are facing an unknown genetic condition, unknown prospects, we’ve never been sure at all that any of her blood tests, any of her immune reactions can be taken for certainty. When you are dealing with a rare condition that has no name, it’s impossible to look at the average. ASD is so well documented, I’m relieved to be able to put a name to the way that she behaves, the manner in which she “socialises” and communicates. The rigidity that ripples reaching far beyond just A and spills over into all of our lives. It’s reassuring to be able to justify the way we have to adapt finally, we have to adjust our expectations to new ways of thinking and that can seem rather overwhelming. But knowing why really helps put to bed any doubt in the methods – not that there were many.

On Sunday we took both children to Marwell Zoo as a birthday treat, once we had explained this to A she was keen to have birthday cake and candles. She walked her way into the Zoo with one aim, find cake, find candles. I tried to explain that we were here also to see the animals which was met by “No animals” repetitively. It’s not the first time we’ve taken her somewhere and immediately wondered if we have made the right choice, we’ve really not utilised a lot of attraction tickets over the years. When we visited Canada I think we probably did the quickest tour of Niagara Falls ever. We did after some time accept that we would need to find some cake, which we did. First we had ice cream, A has taken to moving her evening ice cream to pre food, so a starter rather than a dessert which is a direct result of me using it to keep her occupied while I cook in the evenings. After this she began asking for her lunch, which we knew would probably happen, we managed to take her to a playground briefly until the requests for lunch became frustrating and decided to take her for lunch instead.

It was after all her birthday treat and the aim was to keep her happy, while also giving Sebastian some time around to Zoo. Straight after finishing her meal she wanted to get up and go home. Which was rather predictable, again – we managed to add in a couple of visits around a few of the animals briefly and a small trip to another park. All in very predictable and we knew she would want to go home, but we still try because I think it’s really important that while she might be able to stand right next to a Rhinoceros and not even glance or acknowledge it meanwhile a black and white wheel is the most fascinating thing ever. Until we try we won’t know and neither does she, so try we must – always.


Being Mum Featured Parenting Special Needs

Managing challenging behaviour

Posted on 6th April 2019

Challenging behaviour is behaviour that causes problems for people around the person

No Fighting, No Biting, No Screaming – Bo Hejlskov Elvén

Probably not unfamiliar for families of children with or without additional needs, in fact Sebastian occasionally shows frustration by throwing his toys around the room. Challenging behaviour for us has manifested in many ways, while we can use many of the usual techniques with S so far very few of the standard methods (distraction, calm redirection, talking it through) really work for A.

Where to begin?

Emotional Intelligence

Right now our current method involves using two cards, one with a red block of colour and a sad face and another card with a green block of colour with a happy face. You can read about working on emotional intelligence here.

What we are looking to achieve is firstly understanding of feelings that one behaviour causes another to feel sad and secondly the start of self regulation. Can we get A to stop and think about her actions and how they impact someone else.

This method has been incorporated reasonable well, A seems to understand one thing can make her or someone else feel red or green, we never modelled the cards as ourselves but she has taken the abstract thought and applied it to us rather than just her behaviour. For example If S is feeling sad she might say “S is red” and this has allowed us to further enhance with other words, S is sad, S is feeling angry, S is feeling happy.

It’s very simple but has allowed us to cross a barrier in communication, due to A’s incredible visual memory she took to the cards within a day which is much quicker than we or nursery had planned.

At first it was treated like a game and I wondered if we had made a mistake, she wanted to see the cards all the time but slowly the novelty has worn off and we are even adding a “I can calm myself down” card too.

Working together – School, nursery and at home

Both us and nursery are using the same technique, which is incredibly important to enable children to generalise. It hasn’t stopped all of the challenging behaviour but it’s a start to understanding and learning, which I think applied in the right way – visually and logically A quickly can apply to social situations.

One of our biggest barriers is cognitive rigidity, that is simple that once you know this is the way we do things it’s hard if you have cognitive rigidity to then change that way up. Having worked in Information Tech I know how reluctant the general population are to move away from what is comfortable, the know is easier and fosters a resistant to change, this was one of the biggest considerations when changing any system.

The known is safe, expected and thus anxiety is kept to a minimum in A’s case. So I thought about it and what would I do in a business context to navigate change? Well I would normally talk to a person and explain what I’d like to happen, what I’m expecting of them and how discuss through any concerns or questions they have.

When it comes to children with complex social communication challenges that is not something that is easy or even really possible to do always. The red and the green card along side a visual timeline of events allows us to try and navigate that in a way that can be understood, reducing anxiety, reducing surprises and hopefully reducing challenging behaviour longer term by giving A the tools she needs to start paving down expectations.

Changing your outlook – Why?

People who can behave, will.

Bo Hejlskov Elvén

Let me take you back to a situation that arose a few weeks ago, we had a hospital visit planned which would wipe of the whole days schedule for A. Taking both children to the hospital anyway is quite an event, A really doesn’t like hospital much anyway – who does! Although things have improved a lot (with the help of visuals and staff understanding her needs).

The day before I tried to prepare A that she would not be going to nursery that day, that morning I arranged her visual timeline to show that we would be going to hospital, I explained again that she would not see her 1:1 today.

All was going reasonably well and just as we were about to leave, our new cleaners arrived – I had intended to leave to avoid this as I knew seeing new people would be a risk. A coped reasonably well and other than yelling “HELLLOOOOOO” and “BYE, BYE” on a loop (she was waiting for them to say bye back in the way she likes) we headed out the door without any stress.

The morning other than a few surprises was going reasonably well, certainly better than I had anticipated. At the hospital we managed to park nearby, which was again great, part of the challenge can often be waiting in the car while I try to find somewhere to park which I can lift A out of the car.

Dealing with the unexpected

We arrived into outpatients and I went to check A in for her appointment. No appointment in the system, at about this point I realised something was not quite right but meanwhile A wandered off down to play with the toys, this being a very well known outpatients for her she initiated her usual routine. I spoke with a member of staff who kindly told me that the appointment had been rearranged until the following week.

I explained that we were not seeing the doctor and in fact we were going back home, A took it better than I expected. I suppose in hindsight she probably wasn’t too keen to see a doctor anyway, but I had a problem. I couldn’t just go home because I had expected our clean to be done while we were out that day, A really dislikes vacuum cleaners.

It was raining and I thought while driving, I’d brave going to a supermarket. This was the very worst choice I could have made, it turned out that A was not over the fact that she did not get to see the doctor. I offered her ice cream to go inside but she thought we were getting ice cream from a very specific store locally which sell the ice cream in a tub with a flake on top. To her great displeasure upon reaching the back of the store, which she had repeatedly said ice cream over and over to get to it was not the kind she wanted and she became distressed.

Staying calm

Remaining as calm as I could possibly manage I told A that we would need to go home if she wanted a different kind of ice cream, it was at this point that she said “Next is doctor”. I realised she had something very different going on in her mind than that I had, she had not let go of the fact that she was expecting to go to the hospital and instead we had a delayed reaction.

After this point while trying to get her to leave she had a very public melt down, which involved biting, hitting me in the face, kicking and hitting S. All while S is throwing his snack everywhere in the pram yelling in distress, I felt very sorry for A because in her mind she was going to the hospital, she had spent that morning worrying about going to the hospital only to get all the way to the hospital and not go.

This alongside the fact that she also wasn’t attending nursery that day due to the hospital appointment it tipped her over into chaos. It was that day that I decided we definitely need an extra pair of hands!

Reflection – How could I have managed this better?

In hindsight I should never have taken her into a supermarket, which to date we very rarely go into with A unless I am in desperate need. I should have realised that she would eventually need to vent her frustration at the change in routine and ultimately I needed to manage and adjust my expectations to enable A to achieve success that day.

There is always a trigger and a reason for a meltdown and I have found it much easier to divert before we tip over the edge to avoid a meltdown than managing the cleanup situation afterwards. I see similar tantrums with S but he is much easier to distract and he is able to communicate his desires so it’s easier to avoid, also he does not have the same limitations in his environment and is not as triggered by sound, touch/texture, social interactions and routine. It means it’s less frequent and less restricting overall.

Methods? So what do I do?

I’ve had to really change up the way that I look at parenting with A, no matter how many times I say “use gentle hands” and yet, we still have very non gentle hands. Ditch out all the things traditionally we are taught from my own upbringing.

My parents would probably have used persuasion or bribes for example “If you hit you won’t get X” or “Don’t hit, nice people don’t hit” neither of these work on A and I would encourage you instead to look at why they are doing it. What is triggering that challenging behaviour, what are they getting from it? What are they trying to communicate?

Simple techniques to avoid tipping over

I have learnt that there is a very small window of opportunity before the behaviour switches over into aggression and a fight or flight response emerges, just before this I try:

  • Talking calmly to understand what is causing the challenging behaviour
  • Use the red and green visual cards discussed above to communicate that the behaviour is not appropriate, offering a chance to learn
  • Lowering down to A’s level and making sure I am to her side rather than directly in front of her, if she takes a step back I try and distance myself also
  • Avoid too much eye contact while still appearing interested
  • Using simple phrases and makaton
  • If I need to touch A I will limit this to the shoulder area
  • If it is obvious to me I will try to stop whatever is triggering the behaviour or guide A out of the situation
  • If we are at home A’s bedroom has lots of sensory calming lights which really help, but this is not always practical.
  • Compromising, A really loves ice cream and if all else fails I will compromise with something to transition. Before researching and reading this is one of the things I was reluctant to do in case it increased the challenging behaviour for reward, if you are concerned about this I encourage you to read the book I’ve listed below.

When all else fails..

If the above do not work then it is a matter of damage limitation, making everyone safe

For me always there is a reason, whether it be lack of structure, changing in routine, poor sleep, pain, difficulties in understanding cause and effect, mental overload, sensory input (sound, touch, vision), too many or too little demands in life, relationship conflicts (siblings, parents, friends) or just an effect of the mood of others around A.

When we first started this journey and I was asked “Are there any warning signs” I said no, but now I can see that there are many warning signs indeed. I think these are unique to the individual and I’ve found it very helpful to read around the subject.

Expanding your knowledge base

For more in-depth reading I can recommend “No fighting, no biting, no screaming” by Bo Hejlskov Elvén.

It’s a work in progress for us, challenging behaviour continues to be a real challenge but I feel equipped with the tools and understanding, which on the days when we are on our sixth meltdown and I’ve been bitten several times and with more unsuccessful attempts than I can count. I can reflect and know why it happened, learn and try to adjust for tomorrow.

Special Needs

Noticeable

Posted on 5th April 2019

Sebastian will be fifteen months old soon, at fourteen months Ariella had just started to crawl. I try not to compare siblings but S is a constant reminder of typical and it is difficult, perhaps even impossible to not notice. I remember being surprised the first day that S looked at my face and brought his own hand up to touch my cheek, I could tell by the way he had done this with such a light touch it was intentional. You only had to look at his face to know he was making a connection, a social one in that moment. I can’t remember how old he was but it must have been younger than six months old. I see S as so much older because the baby stage with A has stretched out in front of us, every single step, every skill takes so much energy for everyone involved.

We have a review meeting planned for next week which is focused around whether or not A fits the profile for a diagnosis of Autism spectrum disorder (ASD), this follows a multidisciplinary review that was done back in January. No matter what the outcome of the review I know because I live with A that she is autistic. Every single waking moment is focused around transitions, anxiety and sounds. I know because she has never once held her hand to my face or looked me in the eye the way S does. I know because I still wait for us to have a real conversation. If Autism isn’t the right word then we are making our own profile for a neurological way of thinking that has no diagnosis at present.

It will be nice to draw a line under the last year of confusion on every diagnosis that we’ve gained so far and understand. With understanding we can tailor experiences going forward and we can read and learn how to best support A to enable her happiness. We can stop trying to make a round peg fit in a square hole, I don’t care if we have a round hole in a field full of square holes. But I do care about the unbalance and distress that is caused by the former and while we don’t need a diagnosis it will help a lot with understanding.

In the evenings when I am stirring up the second dose of Ariella’s medicine, watching her eat her ice cream (which she has to have after her evening meal else the world has ended – we make our own now with smoothies) I often think about how something simple like this has become so normal to us and yet for most children, taking a twice daily medicine which you need to give a good stir due to the large quantity of pills dissolving in it would be a massive challenge. Routine has a large role in this, we have a daily rhythm which is held up by blutac and keeps things ticking over. It helps a lot with A’s anxiety and she finds reading the visual timeline very helpful. Somedays it does feel too rigid for me but I know if we don’t keep to it then we are more likely to see a flare of challenging behaviour (kicking, biting, screaming, hitting, repeated phrases, head butting, pushing).

Motivator toys sit in a little accessible basket nearby, only to be used while sitting

We’ve started potty training, yippee! Part of fully understanding the different ways and approaches to how children with ASD think has helped me buy more appropriate reading materials. I’ll have to keep “Oh Crap, Potty training” to hand for S when it’s his turn to potty train, instead I’ve been reading “Ready, Set, Potty” which is aimed at potty training children with Autism and developmental disorders. It makes so much sense to me now why typical potty training methods just won’t work, you are almost relying on a set of typical behaviours and for a child to know what to do naturally. Let me tell you, the only thing that has ever come naturally to A is eating. That’s it, the only one thing we’ve been able to follow her lead for, which is really strange for me because I generally believe that you should follow the child. Only issue is of course that relies on the child having a desire to go.

With that said, potty training so far is going really well given the challenge of communication and resistance to change. We are using a visual time line and motivating toys, no going back now! I’m really keen to keep going and reach that level of independence for A. It will be a joint effort between us and nursery but we are all working for the same goal and I couldn’t ask for more right now. When it comes to potty training S I am hoping it will feel like a breeze! It is the last day of term today and I am expecting the change in routine to holiday to be a challenge for A, I expect Monday will bring lots of challenging behaviours but I am also excited by the possibility of really cracking on with potty training at home. I think having consistency and being able to take A to the potty every hour in the same place will really help, nursery is of course a new environment whereas home is not.

We have visuals stuck up on a mirror nearby and the bathroom is themed with teddies!

Despite how noticeable the difference is, it is different but not less. It has allowed me to think about things in a way I would never have. Would I even know what a visual timeline was? Or have such a understanding of developmental delay and rigid thoughts/routines? I don’t think so. Things are taken quite literally by A and sometimes that can cause some of the biggest laughs ever for everyone involved. I am constantly reminded how lucky I am actually to be part of both parenting worlds, although I wouldn’t wish the struggle on a child it has taught me to look at the world differently and that there are qualities within people that are rare and valuable beyond what we see on Instagram and social media.

Noticeably different but not noticeably wrong.

Lifestyle Parenting

An educational journey – EHCP

Posted on 16th January 2019

I had expected before the birth of A that my first child would grow and one day go to school, I expected that school to be much like the school I attended growing up. There have been quite a few turning points in the last three and a half years in which a large change in mindset needed to begin, but my main focus has been about what is best for A and how we can meet her needs. To enable this to happen, we’ve very much accepted the advice of the professionals, now facing schooling that’s never been more challenging to accommodate.

Specialist schools

Since beginning the process of simply discussing schools between us, her paediatrician and various nurseries it became clear that deciding what type of setting was the first priority. At which point A had already attended a nursery with a typical placement, minimal allocated support and it became apparent to me by the end of that time that while we could force the route of mainstream educational it might not be the best option for A. Whether or not others those that will offer placements and ultimately decide will agree with me that remains to be answered, but in light of this I’ve spent the last few months visiting specialist schools in the area and soon realised how different they all are.

Always looking around the schools I would be pleased to see an environment which is was tailored at educating children with additional needs but later the realisation would hit that with an bang – this is where we are. The responsibility as a parent trying to find somewhere that can offer the care and education we’ve strive for at home for A is overwhelming. It certainty feels more so than ever impossible to ignore the challenges coming ahead.

Since she was born we’ve been told lets wait and see, I still remember sitting in a room with one paediatrician who said “I see these kids all the time, she has a bigger head that average that’s all. Don’t worry about it, that’s all it will come to you’ll see”. We later moved and that same paediatrician called me out of the blue when he had been included on a letter for A, someone had clearly just forgot to update the address list. He asked how she had developed did she have any delays? When I told him he replied “Oh”. That’s all, I don’t cite this story to shame him but to show why I feel your instincts as a parent are so important, even when in the face of experience. Perhaps I’m too pessimistic but if I had allowed myself to believe that, imagine the crash of the realisation that would have been just delayed for later.

It would be far easier if I could ask her what she wants of course, or take a peek at the future to work out where might best suit her. I’m told however that nothing is set in stone and should things change so can her setting. Ultimately I come back to the truth that probably the very best most tailored individual education for A could be given at home, socialisation is always cited as one main drawback and while I imagine this could be remedied with groups it’s really a non issue when you aren’t interested in children anyway. In her most happy, low stress environment where she could focus on any part of learning that she enjoys – in fact if anything children seem to cause more stress. Home schooling is my backup plan to alleviate the pressure of finding a suitable setting by September, but a huge commitment on my part and her brother.

I know going forward what she needs, I just don’t know how that is realised with in an environment like school. At present have a great environment for A, she’s well supported and happy in her nursery school, has access to every therapy when required. But soon it will all be stripped back and assessed, allocated. A will get x amount of this and x amount of that, parents have to argue for the therapy and support. When once it was just open access based on need a great shift occurs.

We are sitting on the very edge of this prepared to see what comes back as A’s plan going forward. It’s a complex process which I am thankful that we have so much support in navigating whereas many parents don’t at all. It’s certainly not a fair even playing field and it really should be. We should hear soon about the type of placement that the local authority (LA) deems correct for A, they’ve come to this decision by requesting up to date documentation and reports from every therapist. Once we know what type of setting then those settings can be approached by the LA to see who has places available ready for September. Then we wait to hear back and cross our fingers that the one school I visited that I felt would suit her is firstly in the right category and secondly has places to offer.

In many ways a structure educational environment has been a wonderful breakthrough for A, structure is predictable which reduces anxiety and as well as this there is structured learning. When portage first became involved A would sit surrounded by toys and not play with them, with us showing her how to play still it took many attempts hand over hand. We had a very easy and hard parenting journey, easy because we had a child that never tested any boundaries – you could leave her in one place and she would still be there happily. The thought of moving or investigating just wasn’t there. In many ways to date it still is not, in my view we have several years of hand over hand parenting. Modelling behaviour and ways to interact with various different objects, learned through others, television or us. Some of those less desirable then the others but all very controlled. In this regard A is perfectly suited to the right tailored educational environment. On the other side it takes tremendous effort to constantly model play, behaviour, speech, keep to the sensory demands and as well the physical demands of helping someone getting around.

Day to day life is very rigid and it can be quite difficult to remember to turn off the music when certain TV shows hit certain parts, to turn off the music in the car before it changes to a song A will not tolerate. While these demands seem completely reasonable to A how do we accommodate the very rigid routine in a group setting?

But to gain access to the curriculum she needs someone to model, repetitively and help her overcome the other barriers of anxiety, mobility, understanding and social skills. With this said I’m also reluctant to believe that having a shadow for your life is in all a good thing, but learning where to step back at the right times is in my view key.

I don’t doubt this struggle of trying to find the appropriate educational setting is seen across the board for all children. Many of my friends who have just decided on school options have not done so lightly, much thought has been placed and many schools visited to determine which best fits their child and their own family circumstances. I’m sure it’s a testing time for everyone!

Featured Lifestyle

Gratitude

Posted on 31st December 2018

I really love the eve of a new year, it’s the one day that we try to reflect and seek gratitude looking at the year overall, rather than the ups and downs as we are in them and also who doesn’t love fireworks? It throws so many people in reflection and I think it makes us better people to do so. That’s exactly what I want to do here and if you’ve been watching my instagram you may have noticed I’ve been reading a lot of positive psychology books lately, for good reason – it’s not been the kindest year to us. We’ve had an eventful year full of very worrying downs but also some wonderful highs of which I am grateful for.  I’ve met some wonderful new people this year who have made me laugh constantly, laughter seems to be the key to any dire situation. When you experience the very low it really illuminates the caring  and the kind around you, so thank you so much for being you!

I am so pleased to be ending the year happy despite every down we have had and with it every challenge we have had to overcome. Getting the bad out of the way but acknowledging it, starvation, coeliac disease, epilepsy, sepsis, screaming, rigid routine and cherishing the good, Sebastian’s birth, my birthday weekend, transforming S’s bedroom, 100k genome project, the endless beach trips, the gym and  Canada is important. Accepting that no matter what is handed to you there is no point worrying about things beyond your control has been my saviour. There are always issues no matter where on the scale they seem to you, to us they always seem to be the very worst because you only know the worst you’ve experienced so far. Perspective is key and for me allows me to look at the bigger picture and realise that my mindset had a huge ability to change how I feel afterwards.

I am grateful that I was able to experience another year where some of my friends were not so lucky. On the eve of a new year I am able to look ahead with positivity because I know that no matter what lies ahead we will face it together and that’s all that matters.

Happy New Year!