ASD, Autism, parenting, Resilience, strategies

The Disappearing Child; What is sensory overload and strategies to cope?

Bear is prone to running off or totally disappearing. It left me in tears, scared I’d lost him forever, often five times a day until I started putting in some simple strategies to help us all. He still does disappear but not only has it reduced to one off occasions but I can manage my anxiety better.

One of the many shared traits of autism is sensory overload. During a overload your child can become violent, refuse to move, stand still and not respond to you, run off, scream and stim. Having a child doing any of these behaviours while you are out is one of the most distressing, difficult, painful experiences we as parents of children with autism go through, often daily. So what is going on for the child?

Here’s one of Bears disappearing stories.

When I used to go into town shopping with Bear and his younger brother I would lose him. Every single time.

We were in a supermarket on the main street. Bear was around 4 years old. We were standing at the checkout and I was packing the bags. I had a double buggy and my younger son Max was in the buggy. Bear was unusually right next to me. I asked him “You OK Bear?”  as I put my card into the machine. He even replied “Yes”. I typed my pin, looked to where he was but he wasn’t. I looked all around us. There’s a good view of the aisles and area around was open. But I couldn’t see him anywhere. Panic rose inside me. Where had he gone?

In the space it had taken me to type 4 numbers on the keypad he had vanished. I ran outside leaving my card in the machine, Max and buggy, and said something probably incoherently to the cashier about needing to find my son. My strategy at this point was always to check exits first.

I went out of the supermarket and looked up and down the main street. No Bear. There was a large lorry in front of me and the road was full of traffic. I walked up the street to the see round the corner but I couldn’t see him. I came back believing I’d need to call the police this time. I was about to go back into to the shop and search the aisles when I suddenly I asked the lorry driver if he had seen a small boy leave the supermarket moments before.

“Yes, he went up that way.” He told me. So I retraced my steps right round the corner and up to the very top of the street. I found him standing by the crosswalk.

I asked him what he was doing.

“Arrows.” He said, and I looked to see a sign post with arrows on them. As we returned to the shop, me shaking inside, I saw the other arrow pointing up the street.

Happily Max was still in his buggy, I apologised to the cashier and the queue, retrieved my card from the machine, gathered my shopping and left.

Do you recognise any of your own child’s behaviour in this story?

What factors are influencing and affecting our children to behave in such ways that are either dangerous or difficult to manage?

I believe Bear runs when he can no longer handle the input of information. Supermarkets are full of overwhelming  colours, sounds, people, smells, bright lights. It makes sense that it becomes too much and the need to get away is overpowering.

Bear gets out of these situations by just leaving. Fast. But there are many ways a child or even adult might deal with this and it’s rare to find a child with autism who will use words to tell us they can’t cope anymore.

The connection between behaviour meltdowns in a child (and adult) with Autism and sensory processing difficulties is now recognised as a major contributing factor. Many of the meltdown scenarios come on because of sensory overload. The classic child screaming in the supermarket that may appear to the untrained (overly judgemental) mind to be spoilt and over reacting can actually be a child in pain from the masses of sensory information flooding their brain. Strip lighting, bright colours everywhere, lots of unknown people moving around them, being bumped by people not paying attention, different smells, which is all too much for a child who can not filter information.

The Autistic brain does not respond to sensory stimuli in the same way as a Neuro Typical (NT) brain. Each autistic brain responds in its own unique way. To understand why a child is having a meltdown every time you enter a supermarket, friend’s house, school, train, car, public bathroom and complete the activity without a major meltdown there are several strategies you can use to improve the experience for you all.

First of all, remember meltdowns are generally caused by sensory overload. Your child isn’t running off because they are naughty. They aren’t screaming because they want to make a fuss. This is about them not being able to cope and as their parents we need to step in gently and take care of the situation.

If you reduce your expectations of what and how much your child is capable of doing in a visit or outing. Don’t be tempted to look at similar aged children and use them as a guideline for your own child. Go by what works for your child and yourself. I won’t take my son shopping and then go and visit a friend. One of these activities is enough. Both together will possibly produce a meltdown.

You can also try using positive distractions to reduce the sensory stimulus. Many parents use ear defenders to block sounds while out. I often keep my child focused on a task he really enjoys while we shop, like finding the ingredients for our next baking experiment. Bear loves food so I use the incentive of a snack to keep him moving.

If there are some things you can keep the same I recommend doing them the same way each trip. Maybe even go round the shop in the same way each time. Keeping things the same is reassuring for children with autism. I often go to 3 different shops and go to them in the same order or at least always finish shopping in the same shop. Normally where I can buy the boys a snack. This is big progress for us as when he was younger it was a one shop only policy for us.

The most important strategy I use is to reduce the sensory stimulus as quickly as is possible. I used to talk and talk to try to calm him down. Now I say almost nothing. Maybe I just tell him what is happening. Something like, “We are leaving now”.  Or even I just say “Hand” for him to hold my hand and we leave.

When in sensory overload less really is more.

By using a combination of these strategies I have managed to reduce how much he disappears when we go to the shops. I know that all the bright lights, colours, smells, sounds, people get too much for him and that he can’t filter any of it out.

How does your child respond when you go out shopping?

Have you found any similar strategies work to reduce the overload?

Comment below and share your story.

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ASC, ASD, Autism, parenting, relationship resilience, Resilience, self resilience, Words of Wisdom

My Resilience Journey Part 1

It was a succession of moments, realisations and my own mistrust of my knowledge of my sons development, and of myself as an overly pessimistic attention seeking human being, that knocked me down a few years ago. A succession of moments and realisations that then ultimately enabled me to nurture my own resilience and inner core strength. Resilience which I need every day as a person and as a mother, to continue, to get up, despite things being hard. Resilience which enables me to be capable of repeating the same challenging tasks every day.

Resilience is what we all need to continue onwards each day. It enables. It is an inner core of strength which we can use to get us through the really really tough times. As parents we need it ourselves to be there for our gorgeous children. As parents we need to be able to grow it inside our children so they too have an inner core of strength which they can turn to in their own dark nights of the soul. Without resilience we disappear into any number of negative spirals which only serve to feed fear, greed, envy, self pity and victimisation. With resilience we can take the hard times as challenges that can potentially feed our inner knowledge that we can. We are able. We are capable. We can get up each day and smile. We can get up in the morning and have the emotional strength to give to others. We can get up and help other humans and we can look out to our planet to build and create positive solutions.

My journey to having a resilient inner core has been fraught with challenges. To continue my story…

My second son was an easy baby. He slept well (at first). He put on weight, he put on a lot of weight. He really loves food. He was easy going (for a long time). I could even get out of a car with him go into a friends house and lay him in a comfortable place and he would stay asleep! I am sure all parents and anyone who has ever met a baby will recognise how amazing this simple act of moving a sleeping baby, from one environment to another, really is without him being too bothered. He was a star baby, no question about it.

What shocked my world was that despite his easy going nature it became increasingly obvious in his second year that he was not hitting many developmental milestones. In fact although he could recite ‘Each Peach Pear Plum’ the whole way through at bedtime he only actually used three phrases in response to us, they were “Yes”, “No” or “I don’t know.” He didn’t make any effort to walk. He liked to sit and stare into space. He often stopped walking through a room. He just stopped there. I would call to him from a few metres away and he wouldn’t flinch. Even when I said his name he didn’t look over to me.

The collection of straws which broke me piled on without me noticing. It was easy to explain why I was struggling. I’d got pregnant again so had less time to give my second son. He was spoken to in Spanish and English so his language development was probably slow due to learning words in two ways, I reasoned.  I over analysed and beat myself up that the warning signs in my beautiful child were signs not of his developmental slowness but of my own hideous pessimism. My sick desire to have a child with something wrong so I could blame someone else for my tiredness, my grief, my inability to cope. And of all of these things it was my inability to cope with him that struck me most deeply.

He did change. It was gradual. The hardest thing was that he didn’t sleep much at night. He crawled over our heads and bounced on us every night until desperate we put him in a cot. He was our only child to sleep/be in a cot at 15 months. We are attachment parents so this was not an easy decision. It did work for a time though. He slept better. Or rather we slept better. Which enabled our resilience.

His developmental delay only became ‘in my face’ obvious to me once his younger brother started speaking (I had better give them both names so this is readable. Our second son is Bear and our youngest is Max, You’ll meet our eldest son later). My husband had said, at very specific moments of not being able to get Bear’s attention, “If that boy wasn’t so intelligent I’d say he is autistic”.

So, Max started using pronouns at the usual time of 18+ months old. Bear still said about himself, “He wants his cheese”. Pretty cute to us all at the time until Max spoke. Using pronouns. Even though he was also bilingual Max spoke in full sentences. Bear did not. Max responded to his name. Bear did not. This difference between them aged 18 months and 3 and a half respectively was now blatant and unavoidably needing attention. The crunch moment, despite all these straws piling on top, came when I asked Bear if he knew the names of his teachers at Play School. I remember the moment vividly. I had no resilience and this was the final straw that broke me.

I was pushing the double buggy and we had just crossed the road and had entered our favourite tree lined pathway to school. I asked the question. Bear didn’t answer. But after a second came Max’s voice saying “Mrs Johns and Mrs Fields”. This still brings tears to my eyes. The younger child that didn’t even go to Play School knew the names of his brothers teachers but his older brother didn’t answer. I now know many reason why Bear might not have answered because I now know so much about his developmental delay Autism. He may have thought it an obvious question. Mama knows the name of my teachers so I don’t need to tell her too. Or he may have had no interest in the question. Or worse case scenario, the tear jerk scenario, is Bear at 3 and a half had no interest in other humans. He, very likely remembering him at that age, really wasn’t capable of knowing who his teachers were at Play School.

It took me a very long time to build my inner core of resilience to be able to help myself and help my sons. I did it out of necessity. I couldn’t break down and cry at any of the worst moments as the autism became more and more life changing to our family. If I did let my guard down and cry Bear usually did something that would make my immediate life doubly worse. Like run a burning hot bath. He was in it not able to recognise himself the temperature. I had to change to manage.

I will speak more in later essays about how I built my resilience to the point where I am now able and capable to manage daily. My 3 boys are also quite resilient to life. It is a journey however and I am fully aware now of the challenges lying ahead. I am taking count and preparing myself. Which enables me to be able to pass on these words of wisdom to you should you need support in your own dark night of the soul to build your own resilience.

Words of Wisdom 1) Do less. Do only the minimum to manage and get through the day.

Words of Wisdom 2) Ask for help. Please tell the people around you that you are finding life difficult. If like me you find this hard write it down. If you are struggling to think of who you could talk to then please go to the professionals. Be prepared to ask loudly. The further from your circle of friends and family the person is, ie. a GP or Health Visitor, the louder and more explicitly you need to say you need support. Or you may find you need to be loudly asking for help from family and friends too.

Words of Wisdom 3) Be kind to yourself. Recognise this is a hard time and you are doing your best. Be kind to others around you too. We need each other, we need family and friends support and kindness is the first way to build resilient relationships.

Words of Wisdom 4) Recognise the good things you have managed to do each day. Daily reminding yourself of your own capabilities builds your inner core of resilience. This is an essential tool, please be kind to yourself and use it and over use it. There is everything to gain by showing yourself that you have done many good things today. Small things are great. Today I got up, got dressed and made my children breakfast and I even got them to school, dressed. Simple recognition of achievement every day helps build strong resilient cores.

Words of Wisdom 5) Be grateful for every tiny aspect of good in your life. Start you day before you open your eyes with gratitude. Sounds cliched but it works. Today I am thankful for the food in my fridge, my 3 healthy, beautiful children, the roof over my head… Even I am grateful I can read this and I am grateful I have woken up to another day.

I would love to hear your own journey to resilience and your thoughts on what prevents you from feeling resilient in your own life. Please comment below.

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