Anxiety, Autism, Getting ready for school, Health, Mornings, parenting

Managing severe anxiety and school refusal? A method from the heart.

Unable to get my son Hunter out of bed I try every trick in the book. I make tea, fizzy vitamin C and pancakes. I rubbed his stiff and sore muscles. I suggest how better he will feel once he is up moving around. I remind how he will feel proud of himself for going in on time. The covers are whipped off. The radio is put on. The alarm is left on by the pillow. I beg and plead. I begged. I begged. I leave the room to cry. The covers are back on. His back faces me. I put my hand on his shoulder.  Here we are again I say inside. I make the phone call.

“Hunter will not be in school today. He isn’t feeling well.” Again. Every day.

Anxiety is invisible. It is hard to spot from the outside. It can be hard to name what it is when you have it. The reason for having anxiety can be a multiple and varied. It can take over everything and leave the person affected unable to function.  It leads to people feeling suicidal in extreme cases. Anxiety is complicated, emotional physiological response to fear and uncertainty with very real physical symptoms. Hunters’ included tummy cramps, trouble breathing and migraines. My own includes sweating profusely and my mind going totally blank when asked questions.

These symptoms of anxiety can not be controlled by the sufferer. You can’t stop sweaty hands or tummy cramps. They are just there. A physical response to pressure. What matters is whether of not they over power our whole lives to the point where we can’t function. This happened to Hunter. His anxiety was so severe he couldn’t get out of bed. He couldn’t attend family events. He couldn’t attend school.

Sometimes anxiety looks like laziness. My son certainly appeared lazy. He was staying up late. Then all night. He was unable to sleep so was self soothing by reading or watching his favourite anime’s. Everyone said I wasn’t being tough enough. I should do more. Take away his internet. Take away his computer. Take away his weekly rock school if he didn’t go into school. I should allow him to fail.

“But he is failing,” I said in his Team Around the Child meeting, “Everyday!”

I knew there must be a better way than punishing him further. I just needed to find it. Besides we had tried the reward positive behaviour and

Anxiety creeps in and possibly never leaves. But it is possible to overcome it. Although it may never go completely. We have done it together. Here’s the method I followed.

I realised I couldn’t go on with this situation, neither could my son, neither could his Dad. His younger brothers were missing out on a relaxed family home. The only method that made sense was the following.

Come from the heart.

Hunter needed support. It was clear that he was is a very bad way. He struggled to speak to me about what was going on. He would answer questions vaguely. He told me he was depressed and he had anxiety. He said it was so bad he couldn’t even get out of bed. Slowly I was able to piece together how severe it was and that the main cause was the school environment.

Reduce expectations.

A few years before the problems had come to a head Hunter had told me our expectations of him were too high. I replied it was only because he was so damn talented and capable. But I noted it inside to reduce some of the expectations. Listening to our children is vital. But it wasn’t enough to change our expectations at home.

School life came with demands that he struggled with due to sensory over stimulation and poor organisational skills. Hunter had always struggled with completing home work through primary. At secondary school I am sure it was his inability to organise himself to do home work on time that started the refusals as students at his school receive negative codes if they don’t hand in work. Hunters solution, just don’t go.

Take away the cause of the anxiety where/if possible.

It took us a long time to decide to Home Ed, over 2 years of refusal which became steadily worse, and it wasn’t easy to let go. But as soon as we had done it we saw improvements. During the following weeks and months our son relaxed. He played with his brothers, he ate more, he pushed his long hair out of his eyes and best of all he smiles and laughs with us.

Provide something positive to build confidence.

We needed Hunter to want to get up and go out even though he wasn’t attending school. We wanted him to have social experiences that were enjoyable. Luckily we found some amazing music experiences that have completely changed his life through giving him the confidence to be out and with other people. He has been composing music with 14 other young musicians thanks to a fantastic programme locally. He even went to Birmingham to perform the song they had written together. He also spoke about his anxiety and how playing music with this group helps him to feel better on our County radio station.

After over a year of unschooling at home and lots of music activities Hunter is currently attending sixth form college and his attendance is steadily improving.

He still gets anxious but he is able to manage it because he is living his life on his terms.

I am incredibly proud of him.

*My son chose his own online alias Hunter.

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ASC, ASD, Autism, Dental Health, parenting

Autism Survival Tip: Brushing teeth struggles and one quick way to solve them.

I’ve mentioned in a previous post that brushing teeth is a real sticky point with our son Bear. He doesn’t brush himself as he is too busy trying to read the Beano or the Phoenix comics or just daydreaming. He finds the brush moving around his molars overwhelming and always puts his tongue on the brush and pushes it away making it a daily struggle.

Tonight I remembered how we had previously used a timer on my phone and a special comedy song to encourage him to brush his own teeth. At least a little. No idea why that stopped because it was very helpful. If you haven’t yet tried the old timer routine I would try that first. We need all the tricks we can muster up to re encourage our kids to learn to do self care solo. The timer doesn’t have to be a phone timer. We’ve used those sand timers before and I even use the cooker timer when I need to as it beeps so loudly. Be creative.

We were creative tonight. OK so I was going for the try the timer routine Bear and he didn’t do a thing. Then I switched over to stop watch mode and that is when the MIRACLE took place. He brushed his own teeth and kept his forefinger up close to the screen. I couldn’t work it out until he pressed lap. He timed each area of his mouth in laps. Back left bottoms, Back left tops, Back right bottoms, Back right tops and fronts. He brushed them all. It took 3 minutes in 6 laps.

Nothing short of miraculous.

I’d love to hear your success or epic fail stories.

Sharing our top tips and experiences is the way to lighten our load as parents.

Go one tell us…

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Mornings, parenting, Resilience, self resilience, strategies

A Hot Chocolatey Recipe for Success

I’m sitting here at my computer feeling content and successful. I believe you should be reading this feeling as good as I feel and I believe I know how you can feel successful. Everyday.

See, I believe we often make the mistake of not recognising our own success.

Success is usually attributed to BIG life events. Great exam results, acceptance to college or University, doing your dream job.

Success can also be attributed to smaller every day events. I made my kids a healthy breakfast, when my kid got cross I dealt with it calmly, and even I arrived at the school gate on time without getting hot and bothered. These statements may say a lot about what I personally struggle to manage everyday but when I do them now I remember to feel the success of achievement.

I’ve got to the age where BIG life successes are rare and unlikely to come around out. Most importantly what this does is build with us a sense of well being which then carries us through the rest of the challenges of the day.

Success can be an abstract term but it can be measured.

It is only when we measure it that we can feel it.

So go on. Congratulate yourself for the good things you have done today.

I’ll do it too.

I woke up early thanks to the lovely sunlight coming into my bedroom and had cuddles with my youngest son, Max. I helped him find his clothes. From the bed. So actually I enabled him to be more independent. He also went downstairs and made his own breakfast (well so we all believed… we later found out he hadn’t had any breakfast at all but we also remedied that with some hot buttered toast).

I made pancakes for Bear, got their swimming things ready, their pack lunches ready and even had a shower before the boys went to school with their Dad. On time. I’ve also now done an hours work for a new client and hung out the washing on the line.

Every time I remember all the good things I’ve achieved today I feel good. You can have the same feeling too. The best thing is the more you remember to tell yourself well done the better you feel and the more natural it becomes. It’s exponential.

Now the funny thing is I didn’t set out to write all this today. I was just going to let you know about a delicious hot chocolate recipe I’ve made up to replaced my morning coffee.

I called it a recipe for success because I love drinking it and it makes me feel much better than the coffee ever does.

Here it is so you can try it out. It’s the kind of recipe that is very open to adjustment and play to make it suit your own taste.

I like it to taste spicy and rich to remind me of chocolates Aztec and Mayan roots.

Hot Chocolate

1 tsp of good quality cocoa powder.

1/2 tsp of cinnamon powder.

1/2-1 tsp of Reishi mushroom powder.

1/2-1 tsp of raw honey.

1/2 cup of just boiled hot water.

1 large splash of goat milk or coconut milk or your preferred milk.

I put all the powdered ingredients in my cup. Pour on half of the hot water. Add the milk. I stir in the honey after the milk so it keeps all the enzymes alive. Then I top it up with hot water. I do it this way as I like the ritual of only using one teaspoon to stir and I never put a used spoon in my precious honey jar.

I use raw honey because of the it’s many beneficial properties not least it’s active enzymes.

I’ve started added the Reishi mushroom powder to give my immune system a boost.

Give it a go and let me know how you got on.

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ASC, ASD, Autism, Getting dressed, Getting ready for school, Mornings, parenting, Siblings

The day my son got up at 7am without a wake up call from me.

I noticed something significant today. In fact I noticed two important things about Bear that hadn’t been clear until this morning.

One of the most obvious signs of my son Bear’s autism is that he is often in his own world. He is very happy there. He talks to himself and laughs. He seems so happy it doesn’t worry me that he has somewhere of his own to go. It only interrupts our lives when we need to get on with something in particular. Like getting ready in the morning.

When Bear is in his own world he doesn’t respond to us. Which means he doesn’t follow our instructions. Which means it takes a long time getting him ready.

I remember one time in particular when Bear was four and I had asked him to get his jumper from the chair. He gazed around the room but didn’t get the jumper even though he looked at it. I know he understood I had asked him to do something. He just didn’t know what it was.

His inability to follow verbal instructions was one of the main reasons that we knew he needed support and looked for his autism diagnosis. He has gradually improved and we needed to improve our own communication and expectations of him to achieve these improvements.

Last night I told Bear that he should stop reading  now (9pm), sleep and get up at 7am to read the comic. He said he would need a loud alarm clock to wake him up. Which is fair enough Bear is someone who struggles to get to sleep every night then struggles to wake up.

When he was younger he would get out of bed constantly and walk around the house. He’s only stopped doing this in the last year or so. Although we still have episodes of late night walking. Now we hear him talking to himself in bed until quite late. Often when we go to bed at 11pm he is still talking. Last night he settled easily. It was little something I had said went into his consciousness.

It has been a slow drawn out process to see changes. But sometimes they do appear to happen over night.

We have had to change our way of giving instructions to see improvement. I will give one specific command at a time. Instead of this vague and unspecific instruction, as he sits at the table after breakfast,

“Bear, go and get ready for school, we have to go soon.” I say,

“Bear, upstairs.” Then we go upstairs together.

I might then say, “Time to get dressed” or something similarly short and precise.

Once we are in his room I name each item of clothing he needs to put on and count down from ten for him to actually put the item on. Sometimes I have to pass him the socks or other items for him to respond.

Recently he has been getting dressed on his own without being asked on non school days. He puts on clean pants every morning because he has always takes off his pants after his first morning wee. He used to take his pants and trousers off after every wee. His getting dressed by himself at weekends involves him pulling on trousers and a hoody over his clean pants. This is progress but it was only happening at the weekend.

So the first amazing thing that happened this morning was that Bear woke up at exactly 7am. No alarm clock. No whispering sweet good mornings in his ear from me. No delivery of fizzy C (my current favourite method to getting him to wake up in a gentle but effective way) from me either. This is a first.

The next amazing thing that happened was when I asked him to put his pants and socks on he just did it. He went off and found the pants and socks I’d laid out and put them on. Without me in the room.

When he arrived in just pants and socks I tried this,

“Put your shirt and trousers on.”

Again, he came in wearing his trousers and shirts.

Something has changed inside Bear.

He is able to get up early on a school day and he is able to follow an instruction containing two items.

These two things are nothing short of a miracle in our getting dressed and ready for school routine.

I know why we’ve had such dramatic changes.

It’s all because of his younger brother Max.

Max has been up to all kinds of fun things early in the morning while his brother sleeps on innocently.

But Bear’s finally noticing what his younger brother is up to and he wants in. I guess he’s found a motivating force to get himself up in the mornings.

I wonder if you can guess what it is?

Max’s routine has always been markedly different to Bears.

Max goes to sleep easily in general. He consequently wakes up early (often very early but that’s another story). He hassles me for breakfast. He hassles me for whichever item of clothing he can’t find. He gets dressed. And then because there is time (usually an hour) he has been allowed to play his favourite game (usually Angry Birds) on his Papa’s mobile.

He has been doing this for over a year.

I’ve been wondering over the last few months how come Bear hasn’t noticed?

We have boundaries over computer/screen time because our boys would play from dawn to dawn without them. We would like them to have balanced lives. Get outside, ride their bicycles, walk, jump, play with sticks, the simple things. So they mostly only play for an hour or two in the evenings. Considering this I would have thought Bear might have noticed Max is getting to play Angry Birds games in the mornings.

Bear often comes into our room where Max is playing and watches him. This is where I need to add that Bear is completely obsessive about playing computer games (as is Max). He is so crazy for gaming on screens that not only do we have limited times when they can play on screens we also have to hide consoles, leads, put in passwords, and go to extreme lengths because he will find a way to play at any time of the day unless we outsmart him. All the gaming equipment has been disabled until we say it is time. So how come he hasn’t ever noticed or said anything about Max playing before school?

The answer is autism.

He doesn’t always have the awareness or consciousness to notice what others are doing. And in the morning if he is struggling to wake up, having been woken up before he has slept enough, then he isn’t really going to notice what Max is doing. Even if he is playing on a screen.

It makes me sad. But that’s how he is and it’s OK too.

The one thing I will not be doing is using playing on a screen as a method to motivate him to get up. We do that enough with the time he plays later in the day. But I’ll save that rant for another day.

Have you noticed differences between your children?

Please comment below.

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ASC, ASD, Autism, parenting, strategies

How to: 2 Simple Methods for Supporting our Children to Improve their Emotional Regulation.

The last time our Autism Support Worker came out I told her how Bear, our 9 year old autistic son, has been very physical recently when he gets upset. When I say physical I mean it really hurts. He uses pinching, punching, squeezing and ramming to express himself emotionally.

I can’t remember what it was about but the worst time he had me pinned against my bed and kept pushing his whole body against mine. I felt crushed bodily and emotionally. Bear is usually very loving and warm. So it is always distressing to me when he flips into aggressive mode. He was cross and he resorted to non verbal communication to express himself.  I remembered something I was told at an Autism Workshop last year, ‘If your child is doing something you don’t like or find uncomfortable at 8, if you don’t deal with it at 8 they will still be doing it at 18.’ It’s a powerful way to imagine what life might become with our children on the spectrum if we just let things happen to us and to them. Things will stay the same.

Visuals are commonly used to help communicate and remind children with autism. I no longer use visuals with Bear because last year he started getting upset by them and throwing them at me. Rather obviously I decided that they were hindering rather than helping him and we stopped using them.

When the Autism Support Worker heard what was going on she suggested a twofold approach. Firstly bring back visuals and secondly to work on his emotional regulation.

Hearing our experience with Bear and his last set of visuals she could tell I was apprehensive about this part of her plan. She asked me if he liked words and if maybe the problem had been the pictorial element of those visuals he threw at me.

I realised that I used to write short lists on the back on an envelope to explain what is happening that day to Bear so he can process the information but I had stopped doing it. I had got waylaid by the terminology. Just because the word visuals sounds like pictures, and often seem to be pictorial, it doesn’t mean they have to be pictures. Or have to include pictures. So we are going to list instructions.

Bear really, really loves Dennis the Menace so I am using Dennis as a positive role model (!!! I know) to explain emotions. We were given a chart of emotions ranging from calm to out of control and I found our old laminated traffic light set. The list is colour coded and numbered with matching faces for each emotion. We came a bit unstuck over colours on the chart not matching the colours on our traffic lights. So I need to do more colour paper circles to include the other colours or only talk to him using one set at a time about emotions. I did talk to him about Dennis and how Dennis feels and he took this on board well. We are yet to see if it will have a positive effect on his daily outbursts.

Do you still find visuals helpful?

Or have you found they had a shelf life and your child stopped responding to them like Bear did?

To sum up the two simple and effective methods to support our children to regulate their own emotions are;

One; Use visuals, pictures or just lists, to show them what is coming that day and we can make a conscious effort to talk to them about recognising what they are feeling inside.

Two; Teaching them to use numbers or colour charts with a scale to help them recognise and communicate where they are at any given point in the day. Using a familiar character as a reference can really help children with autism to relate their own feelings inside them to how they are able to respond in stressful and challenging situations.

I am aware as I finish writing this that I also need to give Bear something he can use to regulation his emotions. Examples of this would be counting to ten, taking five deep breaths or leaving the room when he starts to feel different inside. I will revisit this subject in an upcoming post as it is very important and central theme with helping children be more comfortable and the whole family to have more fun together.

I am also aware that as parents we need to use these same techniques to keep our emotional responses in check at the same as supporting and teaching our children. Please comment below if you have found something here that resonates with your experiences parenting?

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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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