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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The positives of home education.

We have been home educating our boys for nearly all of their lives.

Since lockdown, they have seamlessly slotted back into learning at home.

They thrive sitting at their laptops with just one person sitting with them guiding and explaining. No sensory overload from a roomful of noisy pupils . They can have breaks when they need them, not when the bell rings. They have greater autonomy, choosing when to do a task and when to decide that no, they would rather play table tennis or go for a walk and come back to it later.

Isn’t that how many of us manage our days? A ‘to do’ list? We can choose to get the more challenging tasks out of the way and then concentrate on the things we enjoy doing.

The boys tend to work hard in the mornings. If they really aren’t in the mood, they leave a task until they are. The reward of most of the afternoon free in which to do what they choose is a great motivator. It feels like groundhog day in our house. The boys were diagnosed at the age of two with classic autism and we lived and breathed ABA (applied behaviour analysis) for sixteen years. Having one to one support and home learning is our natural default. In the same way that we never had any tutors at weekends, we now have no formal learning at weekends. It’s important that we all have a proper break from work and school and maintain a routine of sorts.

We are very lucky in that our boys really enjoy learning despite their difficulties and how challenging they find some activities.  In lockdown, we have tried to tell Thomas (21) and Benjamin (21) that they do not need to finish their final major projects, that their work will be graded on the work they did until lockdown started but they want to finish them. They are driven to finish them. In total contrast, Hector (18), does not want to do any work if he doesn’t absolutely have to do it. He’s done with learning for now. That’s fine too.

Marcus (11) is the happiest learning at home. He is thriving and doing well. He told me a few days ago that he wishes he could stay at home to learn with live lessons and interacting with his friends on “Teams” sometimes. We adapt the set lessons to suit his own learning style. He is creative, so we try to turn his project work into models – he made a mobile of the planets this week – or art projects with the information on them, like this letter for a history project.  Marcus does enjoy the company of other children but more to play with and socialise with, not to learn with.

I’m sure the boys will all be fine when schools and colleges finally reopen, they are so much more adaptable to new situations these days.  It may all be very different from what they were used to, which will be another new challenge.

All I can do for now is to continue to keep my boys happy and fulfilled and learning.

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Life in Lockdown

I haven’t written a blog since lockdown except on my regular Facebook page. I haven’t really known what to write.  I felt I should write something profound but I can’t. I can’t speak for all those who have autism or are caring for those who do so I’m just going to write about how the lockdown has affected our family.

The first weeks were the hardest. No school. No college. All routines vanished overnight. How long would this be for? What should I tell the boys? How much should I tell them?

It felt we were all plugged into the news on a constant loop. Our only conversations were around ‘the virus’.  Within a few weeks, Thomas was so stressed that he started swearing at the TV when the news came on. I told him not to look at any news on his device, we would tell him know if there was anything he needed to know.  He calmed down a bit. Much of his anxiety was around completing his college course. He is so driven to get a good grade but he finds his course so hard.

There was no longer any structure to our days. I tried to create some order by setting regular mealtimes. We started off enthusiastically doing Joe Wicks’ morning classes but within weeks, we were all vaguely injured and decided it was safer to stick to the ‘daily walk’. I rather manically devised craft activities. I blew eggs (while we could still get them)  which we all painted on Easter Sunday, I cut up milk containers to make papier mache elephants.

It was quite a relief when school and college started back after five weeks of Easter holidays and I no longer had to think up things to occupy the days with. But, with that came its own challenges, as the older boys have one to one support for their mainstream classes. I am certainly not up to level 3 games design!

We had to make a decision. Jonathan is working from home, he is a key worker and on calls or online from 7.30 doing long hours. I could not be there on an individual basis for each boy and I was concerned for their mental wellbeing as they were more stressed than usual. We now have our regular carers in daily, one a day who we share around with whichever boy needs support or some time to chill with someone who is not me and not one of his brothers.  We also have some online, live support for the boys from college.

The dynamics in our family are complicated. All the boys have had a diagnosis of autism from the age of two.  Although they were non verbal when young, they are now verbal but not able to always interact with others appropriately. Their individual empathy varies and much of their conversation revolves around themselves and their own agendas so reciprocal conversations with each other is often not possible.  It has been quite wearing at times being mostly the only person who they can talk to. I had become used to quite solitary days alone while they were at school. I have had to adjust to constant noise and no time alone.

The boys are not frightened by the virus itself. Sadly for them, they have no grandparents and we see other family members very rarely so they are not missing regular contact with them. We are our own island as we have always been.

They have grasped the concept of social distancing. They comply when we go out with walking single file or waiting our turn to go through the turnstile gate into the park. Thank goodness for Richmond Park on our doorstep. It has been our daily sanctuary and of course, Thomas has been able to keep running. When he was very stressed, I worried how he would cope without running if the lockdown kept us inside.

Our life has not that changed that much. We autism familes have always lived in a socially distanced way. Our weekends are always walks with all our boys. We have never had enough babysitters to go out very often so for Jonathan and I, being home with the boys is not new or different. It is our life.  It was almost ironic on my Birthday when people wished me a Happy Birthday ‘despite’ lockdown. My Birthday was much the same as it is every year, handmade cards from the boys, a walk and a takeaway for dinner. No ‘despite’ about it. We do miss galleries and theatres though but also the zoo and all the other places we usually take the boys to.

The boys have humbled me with their acceptance of the situation. Normally, we would be heading to Yorkshire next week but it is cancelled. Not a murmur of complaint. I have just rebooked our usual wonderful two week summer holiday to the same time next year. I explained to the boys why I thought this was necessary and Thomas remarked ‘I don’t want to go on holiday and have to wear a mask’ so that was fine, they accepted it without any complaint or anger.

They don’t really miss seeing their ‘friends’. They don’t really have many to miss. Most are acquaintances or people who will chat to them if they start a conversation.  They don’t miss social occasions as those are few, unless we arrange one here at home for us all. FOMO (fear of missing out) is no longer present for them. They aren’t longing for friends, for girlfriends, to be in a band, to be invited anywhere like they usually are. They know that is not possible so in a bittersweet way, life is less painful for them at the moment.

We have settled into a gentler routine now. The weekdays are seperated from the weekends when the boys sleep in as long as they like and do no school/college work. We all look forward to dinner in the evening around the table together, often a source of banter and hilarity. It could never be otherwise in our house with four dynamic boys all striving to live their best lives in so many ways.

(Walk/scoot around the Serpentine on Saturday. Our first outing since lockdown was amended. )

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Why are children with severe delays expected to track academically alongside their peers?

One of the things I find really frustrating about the education system is the idea that our children with disabilities, particularly classic autism, should track alongside children of the same chronological age.

My eldest boys, now 21, were diagnosed just before their third birthday with classic, non verbal autism and all that goes with it eg stimming, inability to concentrate, dyspraxia, hypotonia, ADHD etc etc, you get the picture.

So we started intensive therapy with them. Two long, hard working years and they were five years old and could speak some single words and sometimes combine two words together. At the age of seven, we had to suddenly change schools and we got the chance to keep them down a year. They are spring born so were then perhaps six months older than some of their cohorts, rather than six months younger. It worked until they had to leave to go to secondary school at which point the local authority insisted they go back into their correct, chronological year group.

They were supposed to have somehow miraculously ‘caught up’ all those early years when they didn’t have enough speech to learn anything. They were expected to take GCSEs at the same age as their peers. So not only did they need to be able to track year on year but also to overtake to gain those four or five years when they had minimal language.

Of course, they didn’t. It wasn’t possible. How could the education system think it would be possible?

But…fast forward five years. The boys are now 21. They have EHCPs (Education and Health Care Plan) which entitle them to stay in education until they are 25. They are currently studying in college at level 3 with support.  In the school system,  level 3s usually begin at age 16/17 in sixth form and are the equivalent of ‘A’ levels. Effectively, after the age of 18, having an 18 – 25 EHCP means it is now possible for them to take exams at their own pace.

They are a few years delayed but they are now achieving at a much higher level than was originally thought possible for them. It is all the more remarkable for the fact that they don’t have the required number of GCSEs normally needed to access Level 3 courses. What they do have is talent, drive and determination combined with courses which they have chosen and which reflect their individual abilities. Thomas is studying animation and games design and Benjamin is currently studying performing arts after a year of music performance and technology.

There should be more flexibility in the earlier years for children who are severely delayed academically by something that affects them as profoundly as having non verbal autism does.  It would have been such a terrible waste of the boys’ talents and possible futures, if we had not fought for them to stay in education and track a few years behind.

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