Please don’t crash. Not yet.

I keep trying to tell my body ‘don’t crash. Not yet’.

My body is saying ‘Slow down. I need a break’. My mind is also saying ‘Stop now. Stop everything. I want to get off. I need a break’.

I am not unique. I know we have all pushed ourselves to our limits and in some cases, beyond over the last six months. I know I am so much luckier than some who have not had any sort of respite but I am tired. So tired.

My page is public. My boys can read facts, if not fiction. They can read this and understand bits of it so I can’t always write about what happens behind our closed doors. I am as honest as I can be within those restraints. There is always that which is left unsaid.

As we all know, life on Facebook is not real life. I have just posted photos from our recent week’s holiday in the Isle of Wight.  Lovely comments from friends saying ‘fab holiday’ ‘looks like you had a great time’. Beyond the photos of multiple activities and smiling faces are parents who spent a week checking the weather before pre booking visits as nothing can be done spontaneously any more, parents who shopped, cleaned and cooked as they have done for the past six months, parents who tried to make the holiday as much fun as they could bearing in mind the boys had their two week activity holiday cancelled.

After return from any family holiday (except our two week all inclusive one) I always crash badly. Physically crash that is. This holiday I crashed as we arrived. My body telling me ‘you are on holiday, you can rest and relax’ but it didn’t know that it was not really my holiday, it was our family’s holiday and I could not rest. I felt sick all week. Low grade travel sick is the only way I can describe it. Sometimes a feeling that I might burst into tears for no reason.  I kept going. I always keep going. There is no one else to do it for me.

I am hanging on . I am ignoring my body. The boys start back at college in another week but won’t be in every day. We are still waiting confirmation of their timetables so I don’t know yet which days they will be in or at home. I am praying that there are a few days when all four will be out of the house so I can get on with so many unfinished projects.

I don’t want to crash when they go back. I want to use that time. I don’t want to be forced into bed. I need ‘me’ time as well as admin time. I need to gird my loins ready for a month later when I will have to start looking into colleges and courses for all three older boys for next September.

I may have to concede a week off first.

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School + home = learning

In lockdown, we all had to become our children’s teachers.

Added to the stress that covid brought, the uncertainty of everything we knew, the loss of liberty, of freedom, the fear of illness not only for ourselves but for those we love, schools shut for an indefinite period.

All parents found it hard. Some were continuing to work themselves, often from home. The scramble for internet connections, learning how to navigate zoom and sharing work spaces with home spaces.

Those with autistic children found it even harder. No routine for our children can lead to negative behaviours. How to explain to a non verbal child that they cannot go out? to the playground, to school, to swimming and all the activities that make up their daily lives.  It’s hard enough explaining to a verbal child.

I didn’t want to frighten my boys. Wording why we needed to socially distance just walking to the park was hard. They knew about covid, the word was everywhere, on the radio, on television and of course all over social media, all of which they continued to use. It was a delicate balance explaining why their schools and colleges had to close without causing them even more anxiety on top of the anxiety they were already battling with.

We needed a new routine.  For a while, just holding it all together was enough. Keeping our children occupied and stress levels low with craft activities and baking was enough.

But then schools went online. We needed to learn ourselves how to become our children’s teachers. A learning curve for us all.

For us, as a family, it was deja vu in some ways. We ran part home based/part school based ABA (applied behaviour analysis) programmes for 16 years with trained tutors. It wasn’t me teaching the boys, except informally during the hours when the tutors were not working ie evenings and weekends.

We only finally finished using ABA as a teaching method three years ago when the boys all went to specific learning schools/autism college full time.

We slipped back into home learning easily. It was how the boys had learnt so much. ABA was the method and the reason all our boys transformed from being non verbal with severe behaviours to the fully functioning, happy, fulfilled young men they are today. Never let anyone persuade you that ABA is harmful. It absolutely isn’t. Our boys learnt language through play, life skills through perseverance and practice.

For us, learning at home was where they learned best in many ways when they were very young. No distractions. A totally individualised curriculum and most important of all, flexibility. We could teach what they wanted to learn at appropriate moments, when the opportunity arose.

But you can’t teach social interaction without other children. Our boys all went to mainstream nurseries and mainstream primary schools. They needed to be around other children. Imitation is after all how we all learn. The ability to be able to mix socially is  vital for our children as they grow up and needs to be started as young as possible. Isolation at home can lead to a lifetime of isolation.

I think some parents have now discovered many of the advantages of learning at home.  Teaching their child not only academics but life skills which are equally important or for some, even more important. To learn maths by measuring ingredients to bake cakes. To turn school projects into craft activities instead of writing projects.

The ideal situation which may suit many children might be a combination. The flexibility to learn some skills at home in combination with part time school hours.

For us, the combination of increasing school hours as the boys grew older with decreasing hours at home worked very well.  But, regrettably, we had to go through the expense and stress of three tribunals to get the method our boys needed. It would be good to think that the education system has learnt something about the positives of part time home education like we parents have done.

sdr

sdr

 

 

Masks aren’t compulsory for all

In the UK, wearing a mask is already compulsory while travelling on public transport such as a bus. From Friday July 24th, wearing a mask will be mandatory in shops and supermarkets. Children under the age of 11 are exempt from this new directive.

However, there are exceptions for those with disabilities and autism is one of them.  A child or an adult with autism does not have to wear a mask if it will cause them distress to do so or if they cannot wear one for other reasons.

Autism is so often a hidden disability. That’s what will make this new ruling so hard for many. Most autistic children and adults do not have any physical or noticeable signs that they have a disability.  To those who do not know them, they look like everyone else.

Parents are sometimes challenged or criticised for our children’s behaviour, often, it is only those who have experienced it, that can recognise autism.  If you go into a shop with a teenager or young adult not wearing a mask, the chances are you may be stopped on entry and questioned. You may also be judged by others around you for someone with you not wearing a mask.

Many charities have designed cards which you can download and print to take with you stating that someone has autism and cannot wear a mask. Wearing a sunflower lanyard  may help to prevent any questioning as it should be a recognisable symbol to shop employees.

My boys are able to wear masks. The older boys may start travelling to college again in September so I want them to have time to get used to wearing them before they need to.  As they travel alone, it will be less confrontational for them to be able to wear a mask than to go without and find themselves in a situation where they need to be able to explain to someone why they cannot wear one. I have faith that bus drivers and shop workers will understand but I do not want them challenged by unknown members of the public. Older, unaccompanied teenagers with a tendency to be oppositional or to misinterpret situations could get themselves in a difficult situation where I or another parent/adult is not there to step in and explain on their behalf.

They also like to conform. If everyone else is wearing a mask, they want to wear one too. They don’t want to draw attention to themselves so this will work in our favour.

I have explained that the masks are not so much to protect them but to protect others around them. I have told the boys that the masks are a courtesy particularly for older people, those who are more at risk from covid than they are . It means that those more vulnerable people will feel safer going out shopping if they know others around them are wearing masks.

A lovely Godmother made us all masks which we have been practising wearing while away in Yorkshire this week. Normally the boys don’t go into shops but we went to a holiday favourite, the oldest sweet shop and a few bakeries so they all wore their masks briefly.

In the photo, we are all smiling. You can’t see it and that feels very strange. It’s also not as easy to understand speech which I hope will not prove to be a problem for us.  If it does become a problem, then we shall reconsider whether the boys need to wear them.

fbt

fbt

100 days with/without isolation.

Isolation is a word that families with autism are familiar with.

We have lived in semi isolation for the past two decades. Our four boys were severely autistic when they were small, non verbal with behaviours that didn’t fit with the rest of society. Plus, they were runners, they literally ran from us without looking back so going outdoors with them was always a challenge.

Sometimes they were kindly included in school birthday party invitations. They were very rarely invited for playdates I could count those times on one hand. We could not attend any type of party with other families easily as we would spend the whole time chasing after our boys and keeping them and others safe while people chatted together and their children played games with each other. We became used to making our own entertainment.

Over the years, it didn’t really change. We became our own unit, aided by the fact that we had four boys so they never felt entirely isolated. We Ziegels are a crowd on our own. We make our own fun as a family.

Very often we had to turn down invitations to social occasions as it’s hard finding a babysitter for four autistic children. That has excluded us from much of the adult social life that others take for granted.

It means we have not missed those parties and get togethers that others in lockdown have been missing as we have been missing them in theory for all our lives as parents. We have not missed much socially over the past 100 days as we don’t have that close knit family and friends circle that others have. I’m not complaining. I would happily choose my boys anytime over cocktail parties. I’m just stating facts.

We have remained isolated as we always are, lurking on the periphery of what appears to be normal life, watching and sometimes dipping a toe in the water.

 

The other side of isolation is being totally alone.

I have been at home since my boys were born. I ran home based ABA (applied behaviour analysis) programmes for them all for over sixteen years and while part of the time they were at primary school, they were also home for a great deal of time. They had no weekend activities except the ones we did with them. I was hardly ever alone, there was always someone in the house.

Again, I would not change anything. It was utterly the right way for us and for them and we are reaping the benefits now. They are independent in self caring skills. They are verbal. They are following mainstream education now with support, studying the subjects they are talented in and achieving so much.  They have full and happy lives.

Finally, a few years ago, all four were in full time educational placements. I experienced precious time alone on my own. If that is the true meaning of isolation, then I need it and I crave it now that it’s no longer possible.

Isolation for the past 100 days has meant no isolation for me. Jonathan managed to take one day off and we walked together for a few hours, without the boys. He is a key worker and really busy working from home. The noise he makes talking to colleagues adds to Marcus’ online lessons chatter, Thomas’ fitness sessions banter, Benjamin’s singing and Hector’s shouting at online gaming battles.  I attempt to hide but it doesn’t work. There is always a request from someone for my time. I am never truly alone.

I am looking forward to a time when I will be able to isolate again.

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Covid causes ‘headaches’

My dear, sweet, happy little boy Marcus is stressed. He has coped so well with home schooling and holidays cancelled and his world changing but it has all got too much for him.
 
He doesn’t verbalise it as being covid related. We have kept him shielded from most virus talk but of course the older boys know all about it and Thomas quotes facts and figures about it so he can’t help but absorb some of what is going on.
 
Marcus, 11, likes being at home. He was partly home educated for seven years before he went to his current school so learning at home is his default and he is thriving in many ways.
 
He says he has a ‘headache’ when he means something is inside his head and causing him pain. Emotional pain not physical.
 
This morning he crept into bed with me. He was tearful about a memory of a video he watched on Roblox a year ago. He holds all his memories, good and bad and now the bad ones are overtaking him.
 
He is a sensitive soul. For example, a few months ago at school in a music lesson he was taught about different voices and how castratos become castratos. His piano teacher emailed me to say he had had a piano lesson straight after and was so upset by what he had heard that he couldn’t concentrate at all.
 
He retains all these things in his head.
 
This morning I tried visualisation with him, where we try to flood happy memories and positive thoughts for him to think about when the bad stuff tries to take over. We imagined our holiday last year and then I showed him all the photos from that holiday so he can try to think about what makes him smile and keep the sad stuff under control. Fortunately he doesn’t have personal bad memories (that I know of ). Part of his autism is being utterly truthful and not holding back which means he would most likely tell me if he had. Many of his bad memories are from films and videos. Needless to say, he is no longer watching any, only playing the actual Roblox games online.

Once we had talked about his headache, we got out of bed and he helped me change the bedclothes and was happily occupied again.
This virus has affected everyone in so many ways.  I think stress and the decline in mental health will cause huge collateral damage.  Most of this will still be hidden away and not dealt with. We are currently fire fighting the physical illness caused by covid and the consideration for mental health seems to be a low priority.
What is the damage going to be to our children and young people?  How can we support them? They have young impressionable minds that soak everything in but not always the resilience yet to deal with what they are having to cope with.
I’m worried especially about those with autism who already have high levels of anxiety. I can feel the energy some days in our household, four boys doing their best to be their best selves but some days, just feeling overwhelmed and anxious and not always knowing how to understand and process those feelings.
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