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Because family life matters

Tips from those who ‘get it’

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“It was the best of times, it was the worst of times.” The opening words of Dickens novel A Tale of Two Cities could so easily be applied to our lives right now.

Let’s take a moment or two to reflect on the best and the worst of the current situation, and use what we discover to help us through the next phase of COVID-19.  Here’s what some of our team of befrienders, all of whom are parents of children with additional needs, have learnt so far.

GAIL: “With my son being at school normally, I am just not used to the amount of time I have to spend with him. He finds it very difficult to be on his own so I am finding it relentless. I am exhausted. I am trying to find things that we can do side by side. For instance, while he is drawing I am doing one of my calming colouring books. I have to explain that we are together but doing different things. Even ten minutes like this gives me the energy to keep going.”

 

JO: “I am a single mum and usually have amazing support from family and friends. Both my daughter and I are really missing these wonderful people. I am maintaining normal bedtime routines and video calls of bedtime stories with Nana, Grandma and others gives me five minutes to grab a hot cuppa. Looking after Lilly is all down to me and that feels very full-on. I asked a couple of my friends to cook us a meal, they were delighted to help and at the end of a long day is a real treat for me. I have learnt to accept offers of help with shopping too.

We are fortunate enough to live in the countryside. My daughter has no spatial awareness so no understanding of social distancing. Roads and pavements can be really stressful but a woodland walk is just the thing.  A slower way of life has helped us to reconnect with one another. Being forced to stay in has given us opportunities to slow down and relax and play together.

I did have times when I shouted and was a bit snappy then I realised I was putting too much pressure on her, and me, to complete school work. She is learning through play and growing in life skills by doing simple household chores with me. To start with I got impatient with her lack of seeing jobs that needed doing. Now I ask her to do specific tasks and show her how. It takes time but right now I have plenty of that.”

 

JULIA: “I have four children aged between seven and 15 to home school. My youngest son has a range of additional needs and is used to the support of a full-time classroom assistant.  My husband is working at home too so the house is bursting at the seams. We get up and get dressed and so far have maintained the normal school routine – in the mornings at least!

My thoughts? The world has stopped for the moment. Give in to it and embrace it!  Don’t put too many high expectations on yourself. Just take the space to be. Get back to the simple things. Take time to get to enjoy and know your family better.  Smile and laugh.

I set my phone on silent so it isn’t beeping all the time, which enables me to concentrate on what is required of me during the day. I don’t watch the news except maybe the late evening bulletin.  I have discovered that schoolwork with my son with additional needs is best done little and often with big breaks. I use motivators such as ‘now’ and ‘then’. We will do this work now, and then you can have a snack, watch TV, play outside etc. We have not got all the work done that was sent home from school, but I choose not to get stressed about this. I am however using the time to do physio, occupational therapy and speech therapy practise that we used to find impossible to fit in because of tiredness at the end of a school day.

My son has very little speech, so I have been doing lots of reading with him and making him say a few words on each page that he can manage. He appears to be learning to speak through reading. Because he is at home he has the confidence to speak which he may not have at school for fear of not being understood.  I have lowered my expectations. Yes, the house will not be clean or tidy. Yes, school stuff will be in every corner.

I try keep it all together for each child and turn a blind eye to it. It turns out this is more difficult for my husband than me.  So we do try to tidy up a bit at weekends.

Folding laundry is ‘me time’. This is a task no one else likes so they leave me alone for fear of being asked to help. I have time to listen to music, or a podcast, even watch something on iPlayer.

 

REBECCA: “I am working from home with two teenagers with autistic spectrum conditions. My daughter has extreme social anxiety, so my challenge is to support her to continue to have contact with the outside world rather than withdrawing completely into her own shell. Both she and my son would happily spend their whole time looking at screens but if they’re not active enough this can cause poor sleep and nightmares. As the weeks go by they are turning more nocturnal so getting them up in the morning to keep some kind or routine has become challenging.

I am a single parent, so I have no respite from them having sole responsibility for their work, and mental health. Physical exercise can feel a bit overwhelming sometimes. I realised I had set unrealistic expectations and we all ended up frustrated. I got in touch with their schools and negotiated different expectations for each of them as this was quickly becoming a flashpoint.

I try to spend a good chunk of time with each of them on a one to one basis, doing something they have chosen. This has been really good for all of us and helps to keep the peace between them. I have noticed them reaching out to each other for social contact more than before as they are not getting this from school friends. It’s been really nice to see.

My house has never been this tidy. Even the kids are starting to sort their rooms, which is a definite benefit. I grab time to myself when I can, taking five minutes here and there so I can re-charge my own batteries without feeling guilty for taking ‘me’ time. I use Zoom to connect with my mum and sister, walking the dog gets me out of the house and I use WhatsApp, Skype, emails, texts and phone calls to keep from feeling too isolated.

So far there have been good days, mainly good days, but it can be really challenging too.

I figure if I can keep myself rested and positive that is the best thing I can do for the kids. I’m blessed in a way that their autism naturally causes my kids to want to self-isolate and they each have their own ‘growlery’ (room) to retreat to when it all gets too much.  And so do I.”

 

BEA: “I have five adopted children, all with additional needs, whom I home educate. In some ways our lives may have been less disrupted than most, however we would normally do group activities with other home school friends and enjoy outings and walks and adventures outside of the home. Because my children need structure and routine I keep to a timetable. Well that’s not exactly true –  I keep to one of three timetables. I have a ‘regular’ timetable, which can be ‘Mum’s on form, so are the kids and everything in the garden’s lovely.’

I have a ‘chilled’ timetable, which can be ‘Mum’s not feeling great, one or two of the kids are a bit off colour, we’ve had lots of hospital appointments and therapist visits etc’, and I have a ‘holiday’ timetable, which basically includes all personal hygiene, meals and home chores and two extended blocks of playtime.

But I always have a timetable. I’ve been teaching my kids at home for over five years and I wouldn’t have survived without these different levels of timetabling. In a 24/7 world with kids with additional needs you have to set achievable targets and accept your limitations.

My kids need to know what is happening and when so I am usually very definitive. My son loves a trip to IKEA, so we would usually prepare by counting down the days. Ordinarily I would say ‘we are going in five days or so many sleeps’. But now when asked about trips and treats I am not promising anything. If he asks when IKEA will be open again I say ‘maybe, maybe in ten months… I am really broadening time frames and avoiding definitives. I also make it clear that these things are not my choice. It is not mum’s decision that we can’t go swimming or can’t invite a friend around. This decision has been made by the Government to keep us safe. ‘Mummy is just as sad and disappointed as you’.  Acknowledging disappointment and frustration helps them cope. If they understand these decisions are outside of my control they are less likely to ‘punish’ me with poor behaviour.

I underestimated how unsettling it would be for them to have Daddy working in the dining room and not coming home at the end of each day. Their regular routine has been disrupted and they are the most difficult version of themselves. The version we usually see outside of the home when they are having to fit in and negotiate unfamiliar environments, like parties and family gatherings. We know to prepare for those things but still they result in meltdowns. Now home has become the unfamiliar thing and we are seeing more of the fall out of that.

We didn’t really have any time to prepare them for this new norm and that has caused stress. I have made a few errors of judgement requiring obedience when they needed space and choice and time. I am learning to cut both myself and them more slack.  To start with I tried to get them to engage in WhatsApp groups with their homeschooled friends, but though they love screen time they didn’t find it helpful in terms of maintaining social contact. I just had to accept that and move on. Just because it works for me and my friends doesn’t mean it’s going to work for them. Am I worried my kids are going to regress in this area of socialisation? Yes I am but then I have to find some perspective. Their mental and emotional well-being comes first, we’ll catch up with the rest later. They’ll pick up on their friendships in time. Now we have to be family.

At first I supported them to have a chat with Nanny on the phone but now I just leave them to it, she’s their Nan, she can cope. They’ll develop their own relationship much better without me interpreting all the time.”

 

GAIL: “At the beginning of home schooling my expectations were by far and away too high. I don’t know what I was thinking! The pressure from friends as to how life should be during lockdown were invading my mind and I somehow thought our family should fit in with these things. I just have to keep reminding myself that we are not like other families. With the best will in the world keeping ‘home schooling’ is never going to work for us and once I got that in my head things began to improve.

I now choose to ignore some things. I ignore the emails from school.  My son is part of the supported section of a mainstream school so I got all the mainstream emails too!  I Ignore the Instagram photos of squeaky clean kids with smiley faces and calm adults drinking prosecco by the fire pit. Remember, no one takes pictures when it’s all going pear-shaped! I ignore the Facebook posts about what people have done that day in ‘home schooling’ they are not helpful, and to be honest, a lot of the time they are probably not even true.

Set your expectations for each day, then quarter them. That way you’ll have a better chance of making it through.”

 

JEAN: “My grown-up daughter lives in a residential setting during the week but comes home at weekends and for extended stays during the school holidays. These visits are eagerly awaited by both of us and embedded into her routine. Elaine is non-verbal and cannot read or write but is a great communicator, just not the sort of communication that transfers easily to social media. Early into lockdown I tried to video call Elaine on WhatsApp. Everything was going well until she signed and vocalised ‘Home’ it was overwhelming and when I couldn’t say and sign ‘See you soon…. 2 more sleeps’ and talk about the weekend plans she dissolved into floods of tears which soon escalated into huge sobs and coughing and spluttering and the inevitable retching. I felt terrible knowing that I couldn’t help her and that the staff who are already rushed off their feet would have to spend the next half hour calming her down, distracting and mopping up. WhatsApp video calls clearly were not the answer for us!

The staff and I came up with the idea of short pre-recorded videos via WhatsApp that could be shown and re-shown when Emma was happy and settled, and she in turn sends me short clips back. This avoids the need to say ‘bye’ and the requests for ‘home’ but helps up both to stay connected. It also means she can watch them more than once. We’ve extended this so now family friends are sending her short clips and her sisters sing songs to her, and I forward clips of Elaine back to them. At the end of the week the staff send me via email a photo collage of all that she has enjoyed that week.

Nothing is the same as face to face contact but it does avoid the emotional overload and distress of live video calling and is a precious way for us as a family to stay in touch.”

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