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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My boys’ noise tolerance has increased while mine has decreased.

Donald was “perfectly petrified of the vacuum cleaner.” So was Elaine, who would not venture near the closet where her family’s vacuum was stored. Richard, Barbara and Virginia, on the other hand, ignored sound to the point that others wondered if they were deaf.1 These were autism’s first children,2 described in 1943  by Leo Kanner who first identified and gave a name to classic autism.

 
My boys were all non verbal or barely verbal at diagnosis. Hector had retained 12 words which I held on to desperately as he regressed at just two and lost nearly all his language. His other three brothers had a more conventional route to a diagnosis of classic autism, in that they were non verbal and did not speak until we started intensive early intervention in the form of ABA (applied behaviour analysis).
Pre verbal might be a more apt term as all the boys acquired language slowly over many years and now use verbal language as their primary method of communication.
In those early days, we knew they were sensitive to sound. They hated the noise of the hoover. They hated hairdryers or any sudden, loud noise. Sometimes they tolerated sounds which on another occasion they would not, such as my singing!
When we first started teaching them that language and words were something that would be of use to them, we had to be mindful about the environment in which we taught them.
One aspect to consider was that they had difficulty in filtering other sounds. I can’t really describe it as I don’t know exactly what they heard or how they felt about it as they couldn’t tell me but more verbal autistics are able to talk about how it is hard to distinguish noises from each other. An over sensitivity to noise may mean that all noises are heard equally. So, while someone is talking, we may filter out the background noises of planes flying overhead (a particular problem for us in SW London), the washing machine whirring, the kettle boiling and be able to hear and follow a conversation but for some with autism, this filtering may not be possible.
I was advised early on to keep background noise as low as possible. From their diagnosis, I never put on any music or listened to the radio except on car journeys. I don’t watch much TV so that wasn’t a deprivation for me. Any sound we made was deliberate so they did watch videos and we did sing songs to them but not while trying to teach language.
Thomas actually learnt his ABC from a Maisie video clearly enunciated and narrated. (It took a while for him to unlearn G is for grass and teach G is also for girl, green etc.) But mostly, they learnt language from all of us using very clear, single words paired with an object or a picture.
We worked on noise tolerance in incremental stages with Thomas. We would have the radio on or music playing at a very low, almost indiscernible level and gradually turn it up a little higher.  Benjamin, his twin, was the opposite and didn’t seem to mind background noise at all. Funnily enough, he is now a brilliant drummer.
They demonstrate to us all the time, how autism affects individuals in such very different ways despite them being twins. We have been acutely aware of the differences between them and have adjusted the ways in which we have taught them new skills. Their programmes were individual and specific despite them often working on similar skills at the same time.
Gradually, over many years, all four boys have become accustomed to the general levels of noise we all encounter outside. They are also able to filter and hear conversation now with no problems.  The only residual issue that remains is their own regulation of their own voices. They tend to talk very loudly. I wonder if this is partly also due to being one of four in a family where you need to speak loudly to be heard over your brothers! But also, because they are not always able to have reciprocal conversations with appropriate turn taking so they just talk and in order to interrupt their flow of speech, you need to speak loudly.  My default at the moment when they shout/talk to me when we are alone is that I am not an old lady just yet and I then reply very quietly that ‘I can hear them and can they hear me?’ They always reply ‘yes’ and moderate their spoken level for maybe the next few sentences before it is forgotten and they are back to talking loudly again.
Their noise intolerance has rubbed off on me. After two decades of not playing music in the house, I find it hard to tolerate others playing loud, random music such as the decorator this week with his radio turned up high so he can hear it wherever he works. Fortunately, I always enjoy hearing the boys making their own music. Marcus plays trumpet and piano and of course Benjamin tinkles happily on the piano or plays his guitar and sings most evenings.  So my noise intolerance is probably just old age and irritation and not true noise intolerance although I am unable to write with any noise in the background of any sort. I should be writing in a shed really, goodness knows how people can concentrate and write while sitting in a coffee shop.

I relish silence in the house now in those hours when the boys are at school/college. For over 16 years, my house was their school so the silence feels well deserved.
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Finding what we need close to home

I know many families must live with the constant worry of  ‘are we doing enough?’ ‘could we make their lives easier?’ ‘how can we help them?’  And the awful one which I cannot voice ‘who will look after them all when we are no longer able to or are no longer here?’

We are not unique in having more than one child with classic autism. We are not unique in having no neurotypical siblings for our boys to help them on a daily basis, to accept and love them, to perhaps take over the legal side of their lives when we cannot.

Some days, it hurts. I feel that I am stretched too thin. How can I provide everything that each of my boys need? My brain spins trying to remember every form which needs completing, every phone call which needs making, all the day to day management to keep their education and some social activities going. I am trying to do my best to ‘keep all the balls in the air’ an expression my boys wouldn’t understand as they would take it literally.

The scaffolding needed behind their achievements is immense. Thomas only succeeds in his running because he has an amazing mentor who literally manages his running life, fills in the forms, books the races, trains with him and even collects him and takes him to races and home again.  Thank goodness, he really gets our situation and has stepped up despite not being family. I am so grateful for that help and I know Thomas is too. I’m not sure he realises that without that support, he wouldn’t be able to compete as he does.

I cannot divide myself evenly among four.  I don’t feel that I have enough time or energy to spend with each of them. I worry that they don’t have many friends.

Yesterday was wet and miserable. I was in an adjacent room listening to an animated,  non-stop dialogue between the oldest and youngest brothers (20 and 11). ‘You go in and I will follow you and save you’ ‘quick, quick, let’s go!’ ‘no, don’t kill me, I’m your brother’ . They were playing a computer game, Roblox, involving lego type figures which Thomas has played since he was very young and Marcus has adopted too. They both love it and play it together frequently.

Yesterday, I realised, they both ‘get’ each other because of their own difficulties. They are perfect gaming partners for each other. They were shrieking with laughter. Playing with each other, alongside each other, the photo I quickly took was not as it seemed at all. Two boys immersed in their computers? No, not at all. Two boys playing a very inclusive, interactive game with each other.

How do I really know what they need?  I think they are what they need. They need each other and perhaps they need each other to be exactly as they are.  I think that is something I must remember when I worry about the future or even about the now.

What they need is right here on our own doorstep.

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Accommodation, not sympathy needed.

This morning I cried.  I honestly can’t remember the last time I cried about any of my boys being autistic. Maybe ten years ago?  I had to listen to my son on the phone telling me he had failed his English GCSE for the fourth time. His voice was full of anger and disappointment and misery. He was just about holding it together . His bravery made me hold it together too for that phone call.

Today I wish that autism had not been embraced into a cover all umbrella word. He does not have Aspergers. He was non verbal and he spent years learning to speak, word by word. At five he had single words, defined as being at the level of a two year old. His ‘type’ of autism is so different to most of his classmates who all grew up speaking without assistance and without a serious language disorder like he has. Nearly all of them have now passed English.  He masks so well, his verbal language is so good now that many people do not realise he has autism in any form.  I am still amazed that my non verbal child has grown into a young man who can hold his own verbally.

His language disorder is not indicative of his intelligence. I know that, but he uses words like ‘dumb’ to describe himself on days like today.  His self confidence has taken yet another knock.

His short films are brilliant. His photos are amazing. His shoes designs are fabulous. He is so creative and talented in all the visual arts but he struggles with written communication.  I still complete forms for him and negotiate anything requiring a written component as he finds it so hard to comprehend complex written instructions. He almost failed an art assignment recently that he worked on for weeks, not fully understanding the written brief.

One day it won’t matter. One day he will not have to queue up after the uni talk, as we did yesterday, not to ask creative questions but to ask if they will consider taking him on a course if he fails English again (which he has). One day, he will be making amazing films or working in another creative field and people will talk to him about projects, not just give him written briefs. He needs to listen and to talk to understand. Why is that so hard for others to understand?

He does not want words of sympathy. He dislikes personal messages sending condolences to him. I think he is like me in many ways, I react by swearing when I hear things I don’t like. A few choice words, not ‘sorry’. It just doesn’t cut it.

Meanwhile, we will look into another re marking, as we have before, as yet again, he only failed by two marks. Two marks which will change the course of the next six months for him.

Two measly marks. Today, autism is not a super power in our family.

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