Life in Lockdown - interviews with parent carers
When Britain locked down in March 2020, life as we knew it took a strange and new turn. We wanted to know how families of children with SEND were finding things, so between April and June 2020 we asked any parent carers who wanted to, to take part in some little informal interviews, which we then published on our social media pages.
We had lots of feedback from other families saying how helpful they found the interviews and how they felt less alone knowing that others were going through similar journeys, so we're publishing them here for posterity.
Click the links below to read each family's story.
E's story
Link to story published on Facebook on 15/04/2020
As we enter into the fourth week of lockdown, we thought you might be getting a bit sick of our voice (we certainly are!) So we asked Suffolk Mum-of-two E a few questions about how they are getting on, and here's what she told us:
Q1. Thanks for agreeing to talk to us! First up: what’s been the best thing about lockdown so far?
A: The best thing so far has been spending more time with my children. I have a full time job and have always worked weekends and school holidays, so I'm really enjoying the chance to be at home with them.
Q2. And the hardest?
A: The biggest challenge has definitely been trying to teach them! My 8 year old has ASD, which means he has a very specific way he will comfortably learn. Watching him get anxious about doing his work, sweating and saying his tummy hurt was absolutely heart-breaking. We worked through it by taking our time, wearing his headphones like ear defenders, keeping learning to ten minute chunks and lots of holding hands.
Q3. What activities have your kids enjoyed the most?
A: We've really enjoyed being in the kitchen cooking together. We have made cakes, homemade pizzas and the kids love helping chop the vegetables. We've got a great book with lots of cake recipes in it which always goes down well - we definitely recommend the honey and banana muffins and the marshmallow and cranberry mini muffins! (See link at end)
Q4. Do you have a routine or do you go with the flow?
A: For my children, I find a routine usually works best, but we do go with the flow to some degree. J needs the safety net of a routine but I try to give them choices through the day as to what we do, which works for us.
Q5. How do you stay sane as a Mum?
A: This might possibly be the hardest one to answer! I have been getting up early so I tend to get about 90 minutes to myself before the kids wake up. In this time I try and do a load of washing and get a YouTube workout done, which helps me feel ready for the day.
Q6. If you knew another parent struggling with looking after their child with SEND right now, what would you say to them?
A: I would say hang on in there. The hard days seem really awful - I have cried most days at some point. But a good friend said to me, 'Don't stress, cuddle them a little longer and as long as you're there for them, that's all they need right now - they just need Mum"
We couldn't agree more. Thanks so much for talking to us E, and for your honesty about the ups and downs. We think it sounds like you're doing a fab job. And pizza as learning? We are IN. Where do we enrol?
If you're now craving honey banana muffins (we are), you can find the recipe book E mentions here.
Claire's story
Link to story published on Facebook 17/04/20
We officially have another three weeks in the current conditions, and whilst that probably wasn't a surprise to any of us, it will be good news for some and tough for others.
We caught up with mum of 3 Claire earlier this week. Claire’s oldest daughter Ruth is nearly 23 and has Angelman’s Syndrome, a rare genetic disorder that causes severe developmental and neurological issues. We asked Claire what lockdown was looking like in their household and this is what she told us:
Q1. What’s been the best bit about lockdown so far?
A: Having to slow down and just be (as long as you don’t look at other people’s Facebook to see what they think you should be doing!), spending time together in the garden as a family resting, and watching Ruth interacting with wider family on Zoom.
Q2: And the hardest?
A: For Ruth, who is really sociable, not being able to go out and see her friends, carers and taxi drivers! She loves being independent from us so it’s hard for her but she’s adapted really well.
For us as Ruth’s family, one of the hardest things has been the lack of specific advice about how Ruth’s conditions might be affected by COVID-19 or what medical interventions might or might not be needed or used. She is vulnerable so we are shielding her and no-one in our household has gone out. We are grateful to a friend who has done some shopping and picked up prescriptions for us but it’s hard not to feel fear, which comes and goes at odd times.
Ruth is profoundly disabled and needs 24/7 care. At the moment we can’t access any day placements or carers so there’s no respite for us and we are pretty tired, but her sleep has deteriorated since not going out so it’s hard to rest, coupled with the worry that she might lose skills if we don’t play with her. It’s hard sometimes seeing everyone else using the time to spring clean or do crafts etc and yet again feeling like I can’t do what everyone else is doing.
Q3. What activities have you enjoyed the most?
A:Sitting in the garden in the shade playing with toys, crazy foam, trampolining and water play. The Disney+ channel is a lifeline too! We’ve done Zoom catch-ups with family and church and Ruth has enjoyed waving at people she knows. Our other two grown up children have done some baking with her too which she enjoys.
Q4. Do you follow a routine or go with the flow?
A: We’ve developed a new lockdown routine, allowing some lay in time but getting Ruth up and having set mealtimes so she knows what to expect. She’s eating and expecting more food at home (aren’t we all?!) and is never full! We’ve had to move bedtimes later and use her medication more at night as she isn’t getting so tired out during the day and so isn’t sleeping well.
Q5. How are you staying sane as a parent?
A: You’re assuming I was sane to start with…..!
Lowering my expectations has helped; so if we do get some sleep it feels like a win rather than focussing on what we didn’t get. Not expecting ourselves to be able to do what her day placements do or what college and school did. I’m trying to diet (aren’t we all?!) so if I get the washing out I reward myself with a cup of earl grey in my nice mug with my feet up, or ask one of the others to watch Ruth for a bit while I go and lie and rest or read. I don’t watch the news or go on social media too much as it isn’t always helpful – I choose to read things that are positive rather than negative and don’t get overwhelmed trying to help everyone. We’re all on different parts of the journey – you can stand with people but you can’t rescue them.
Q6: What would you say to another parent of a child with SEND who is struggling right now?
A: Oh wow, that’s a tricky one! Be kind to yourself – you will get through this. Pacing yourself is important, as is asking for help. Stay connected with your friends on the phone or FaceTime or Zoom. Survival is a personal journey, only you know how you cope best.
Thank you so much for talking to us Claire, we think you're doing an amazing job. Stay safe and stay well .
Jackie's story
Link to story published on Facebook 21/04/20
Continuing our mini series of chatting to families of children and young people with SEND about how they're coping, we caught up this week with Jackie, whose son Dan is a film buff who happens to have Autism. We asked her our usual questions and this is how it went…
Morning Jackie, thanks for chatting to us! Your starter for ten - What’s the best thing been about lockdown so far in your household?
A: Not having to rush about like a headless chicken in the mornings to get out of the house for work or day services. Mornings in this house are not the best, even with a regular routine! Dan has autism and his own agenda, so if you look like you are in a hurry, he will go even slower and not cooperate (I do love him to bits though)
Q2: The hardest thing about lockdown so far?
A: Coping with family members' anxieties, both in this household and other relatives who are having to stay in for 12 weeks. Initially Dan took it literally that you weren't to leave the house and wouldn't go out for a walk or even in the garden. We've managed to get him into the garden on his bike now, where he's made it his mission to try and run me over - but it's a start!
Q3. What activities have worked the best?
A: Dan has a love of videos and DVDs, he has rearranged his extensive towers of both a number of times and I'm sure he would know exactly where to look if you asked for a particular title amongst the 1000’s. He has also enjoyed cooking, bread (when we had flour) and cakes and muffins (thank goodness for boxed cake mix!) We have also enjoyed playing Mario Kart on the Wii - he wins every time, even though he likes to go off the track. His favourite saying is “Oh dear, very crash!” with a roaring laugh.
Q4. Do you have a routine or do you go with the flow?
A: That is a very good question. Well, I have a routine! If you asked Dan he would say Nooooooooo. I tend to work in the mornings (I only work part time) trying to get the most important bits out of the way while Dan is having breakfast and free time. This means that in the afternoon he has to put up with me! We do a bit of learning, but in a fun way and if he is starting to get stroppy, we stop and do fun things. There's learning in every activity, you just have to think outside of the box.
Q5. How do you stay sane as a parent?
A: Giving Dan something visual to focus on (verbal instructions get lost in the anxiety) - for example, we have a family holiday booked for June. This is written on the calendar which Dan looks at. We have conversations about who is going on the holiday, what he wants to do whilst away etc, but with things so up in the air every conversation we also say “fingers crossed, everyone needs to get better”. This way if it doesn’t go ahead then the disappointment will be lightened. My time out comes when Dan is in bed. I have a shower every evening and just relax whilst standing concentrating on the droplets of warm water. This helps me unwind and I sleep better.
Q6. If you knew another parent struggling looking after their child with SEND right now, what would you say to them?
A: I would send them a hug. Days can be very tough, and I know you feel alone. I would also say YOU know your child best - choose your battles. If it's not important, let it go – walk away, have some time out and a cuppa, and let your child come to you when they are ready. Slowly do something fun together that your child enjoys - there is learning in everything we do. If you're struggling with unwanted behaviours, see if you can notice what the trigger is. You may need to keep a diary to see if there is a pattern - if the behaviour is happening between 11.30am and 12 or 3pm and 4pm… are they getting hungry? Etc. Lastly: YOU are doing the best YOU can, keep doing what is right for your child and yourself. You are amazing, stay strong.
Thanks Jackie, and we want to say the same right back to you. You're doing a fabulous job. Thanks for chatting to us, and Dan - any DVD recommendations??
Vicki's story
Link to published on Facebook 28/04/20
Thank you to everyone who has been in touch to let us know that you're enjoying these interviews - we are too! And a special thank you to everyone who has agreed to take part, we are really grateful. Today we are talking to Vicki, who works part time for Suffolk Carers Matter and is also Mum to Joanna and William. William is at sixth form doing his A-Levels, and also has various diagnoses including cerebral palsy, ASD and PVL (Periventricular Leukomalacia).
Here's how our chat went:
Hi Vicki! Thanks for taking the time to talk to us.
Q1. What’s the best thing about lockdown been for you all?
A: We’ve spent a lot of time quizzing & doing board games together - some via FaceTime with other family members in other parts of the UK. I can unashamedly sing along (& sometimes dance!) to the radio which we have on pretty much all day - the TV doesn’t go on until teatime usually. Our ‘Covid19 timetable’ works for us all in the mornings, whilst we’re working or studying. We tend to stop for Popmaster on Radio2 every morning!
Q2. And the hardest?
A: Trying to find ways to get personal space / time out from each other whilst also not having respite. We’re missing friends and family and being able to travel – we were meant to go to Snowdonia at Easter but of course that couldn’t happen, plus we miss going to the beach and seeing the sea. There are new things that need to happen, too - finding ways of building William’s Physiotherapy regime into the day and having to facilitate shopping for my Dad, etc. The kids want me to state here that the hardest thing for them is listening to my singing!! (Editor's note: we don't believe that for a second Vicki, we're quire sure you've got the pipes of an angel)
Q3. Routine or go with the flow?
A: We do a bit of each and I think we’ve got the best of both – a routine of same alarm time/shower/breakfast, then work or study in the mornings followed by a less structured afternoon/evening. We usually hit the hay at the same time at night.
Q4. How do you stay sane as a parent?
A: Our cat Stan Lee is both a calming influence and a great source of amusement! He’s clearly relishing us being here all the time ... and totally rules the roost. He’s got the hang of watching Springwatch (loves the birdies) but he's not such a fan of the Jurassic films (definitely doesn’t like raptors!) I have other interests and hobbies I try to invest time in - even when it’s based at home for now, plus lots of (decaf) tea and coffee. It also helps me to remember my utter appreciation for and faith in the NHS (after all they saved us before now) in terms of why we’re all doing this.
Q5: What would you say to another parent of a child with SEND who might be struggling right now?
A: Try and remember that every day is a new one ... each day is a fresh start. This situation we find ourselves in might be for now - however long that is - but it hopefully isn’t forever. Never forget that there are people & organisations that you can reach out to if a crisis arises. Be thankful for something at the end of each day - and find something that makes you smile :-)
Thank you Vicki, we've loved hearing from you and we hope you are all back at the sea very soon.
S's story
Link published on Facebook 30/04/20
I is 9 and A is 7. They live with their parents, two guinea pigs and a cat called Boo, and enjoy Lego, hot chocolate and being creative. A has a diagnosis of Autistic Spectrum Disorder and we caught up with his Mum S to see how lockdown life was going in their house. They also sent us through this photo, which we’re really hoping turns out to be a Science experiment and not some sort of healthful breakfast smoothie…. Read on to find out!
Hi S! Thanks so much for taking the time to talk to us.
Q1. What’s the best thing been about lockdown so far in your household?
A: No commuting! My husband isn’t usually home until bedtime, so his actual time with the kids is usually short. Add in all the activities my daughter does and we are usually rushing about a lot. Now our evenings are relaxed and we can all eat dinner together.
The kids say: having time to do stuff and spending more time at home and with the family.
Q2. And the hardest?
A: Trying to achieve some kind of schooling is hard. I’m lucky that I was on a study break so I’m not having to juggle my own work and theirs, but my son needs 1:1 support to keep on task so I can’t just leave him to it. He finds writing a real struggle so needs me to scribe for him, and inevitably when we are trying to do a task, my daughter will need some support too. Juggling both can be very tricky! They both find going out quite stressful so we don’t go out as much as I’d like which probably doesn’t help our moods, but I’ve had some success getting my daughter to go for a bike ride so we are doing that more. It’s constant trial and error to work out what’s best for them, so we are learning all the time.
The kids say: mood swings and paying attention.
Q3. What activities have your kids enjoyed the most?
A: One of the simplest things they’ve loved is getting the chalk out and letting them draw on the fence and patio. I’m not sure the fence will ever be the same again but it looks very cheery! Our garden is quite small, but I bought some sensory stepping stones that have helped with making it a bit more fun. We also did some science experiments with vinegar and bicarb to make frothy explosions, which were brilliant. (Editor’s note: PHEW, that’s what it is. We can stick to coffee for breakfast!)
Q4. Do you have a routine or do you go with the flow?
A: A bit of both. I try to keep school work to the mornings, and leave the afternoon for other things. My daughter’s school have set 3 pieces of work to do a day so that gives a good structure, and I try and make sure my son does 1 or 2 things from his work. I’ve found if he isn’t initially in the mood, if I let him go off to do his own thing he will eventually come back and ask to do something. We keep it very short for him though - 10-15 minutes on a task is plenty.
Q5. How do you stay sane as a parent?
A: My daughter is reading this over my shoulder saying I don’t!
What I try to do is make sure I have some time for me every day. Leaving the afternoons free means I can sit and have a cup of tea in peace (ish), and my husband does breakfast in the mornings so I can wake up a bit more slowly! Also just being very realistic about what we can achieve. We aren’t the average family, so I don’t try and keep up with the Instagram standards.
Q6. If you knew another parent struggling looking after their child with SEND right now, what would you say to them?
A: Be kind to yourself. Do whatever works for you and your family, nobody else knows you better. I think some days you just have to declare a holiday and let everyone have a breather. Also: people get really critical of screen time and worry about the kids having too much. I actually find screens incredibly useful and we aren't restricting them. There are lots of games and apps out there that really stretch the imagination. If your child was building things with Lego that they build in Minecraft you'd be amazed. We also use coding apps, where they have to build a game before they can play it. There's lots of creative options out there, embrace it.
My daughter’s advice for others is: don’t try and make it too big and impressive, just do what you can.
Wow, there’s not much we can add to that advice, "I", – thank you, those are wise words for all of us. Thanks to your Mum, too, for all her wisdom. We think it sounds like you’re all doing just fine
Lisa's story
Story published on Facebook 05/05/20
If you’re feeling overwhelmed or isolated in these times, you’re not alone. We’ve all had tough days lately, and to try and help we’ve been chatting to families of children with SEND throughout lockdown to see how they’re getting on. Today we’re talking to Lisa, whose 8 year old son Oliver is non-verbal and severely autistic.
Hi Lisa, we’re sure your days are busy, so thanks so much for chatting to us. Our first question then:
Q1. What’s been the best thing about lockdown so far in your household?
A: Spending time with Oliver and sharing this experience with him. He is pretty oblivious to everything that is going on at the moment, which is a blessing really - it’s been lovely to see him happy and enjoying himself and I’m happy in the knowledge that he isn’t worried or anxious about the situation. It’s quite nice to drift off into his world for a few minutes! I work, so our household can be busy at times, but it’s been great to sit with Oliver and help him learn. We have made some good progress in certain areas and it’s lovely to see him so happy and enjoying his work. We also usually attend quite a few appointments so it is nice to have a break from that, plus Oliver copes with phone appointments easier than physical ones, so that’s actually been very helpful.
Q2. And the hardest?
A: The hardest thing with this situation is the unknown and not knowing when this will end. I do try to hide my uncertainties from Oliver, but due to his health issues we are unable to go out. We are lucky that we have a garden and Oliver loves playing in it, but it has been hard to remain upbeat all the time.
Q3. What activities have your kids enjoyed the most?
A: Oliver loves one to one attention, so has enjoyed most of the things we’ve done together - being able to spend that time with him has been invaluable. He loves books and reading, so we’ve taken his love of those to new levels using technology (which he also loves) – he copies the titles of books into YouTube and finds videos of the story being read, and he also enjoys using PowerPoint so we have done presentations together typing the pages of the book and then he has enjoyed presenting them back to me, which is really helping his spelling. He’s enjoyed doing the worksheets set by the school and really enjoys the different PowerPoints on Twinkl.
We have done some maths, English, and plenty of games - just trying to keep him doing a little bit every day. He also really enjoys being in the garden so we try to spend some time every day outside. It’s lovely to see him happy on his swing or bouncing on the trampoline, plus it also gives me a little bit of time to sit down and relax!
Q4. Do you have a routine or do you go with the flow?
A: Routine is really important for Oliver, so I have definitely had to have a routine every day. It makes the day easier for him and also gives me a bit of structure, I even try to keep his meals at the same times and keep his bedtime routine the same as normal so there is structure in his life. I’ve been trying to structure his schooling around some of the things he does in class, e.g. circle time which he really enjoys. We use a lot of visuals as Oliver is non-verbal, so they have really come in handy with this lockdown. We have had more time to use his talkpad and have noticed some improvements in his speech. It’s great to spend one to one time with him and see him progress, however small the steps are.
Q5. How do you stay sane as a parent?
A: I think trying to keep active and busy. Having Oliver is full-on busy and takes up most of my time! Keeping myself busy makes the days go that little bit faster and a bit easier to get through. I have never homeschooled before and it is a challenge in itself - he associates being at home with fun and trying to get him to do schoolwork is challenging, but the little wins I have with him keep me going. Staying in contact with family and friends at this time is vitally important too - you can offload when you are having a down day and realise they are doing the same with you. So communication is a.big one for me. It’s nice to have friends and professionals around that I can pick up the phone to when it gets difficult - the organisation I would like to mention is definitely Activities Unlimited - they are so helpful, answer any question big or small and can arrange short break budgets for your child to do various activities.
Q6. If you knew another parent struggling looking after their child with SEND right now, what would you say to them?
A: I would definitely try to offer a ‘listening ear’ and offer reassurance. If I found they needed more help, I would try to direct them to different organisation that might be able to help, but I think often encouraging words and keeping in contact with family and friends would really help. Letting them know that what they’re feeling is natural in our current climate. I also would share what is working for me and give them ideas of what might help them. Reassure them, saying this is new to all of us and you are doing your best. Concentrate on what they are doing and don’t worry about others. Don’t feel inferior if someone else is saying they are coping better. And lastly say ‘I am on the other end of phone or a message away anytime’ .
Thank you Lisa, it’s been an absolute pleasure to chat and it sounds like you’re coping brilliantly. We love your commitment to find and enjoy the positives in this situation, that's something we're definitely going to try and do going forwards. Stay safe and thanks both to you and Oliver
Emma's story
Story published on Facebook 07/05/20
Today we caught up with Emma who works as part of our Activities Unlimited team, who provide short breaks and activities for children with SEND. Emma’s daughter Lauren has a diagnosis of global developmental delay. Emma writes, “GDD comes in varying degrees but can be a largely hidden disability. All children with GDD are all so individual and there is no single experience - only that all progress, however small, is a step in the right direction. Independent living does seem a long way off but Lauren has always been happy and healthy, extremely funny and is complimented by friends and teachers for her kind and caring nature so I couldn't be prouder.”
Cor Emma, you’ll make us well up before we even get started! Quick, let’s ask you some questions:
Q1: First question then, what’s been the best thing about lockdown so far for your family?
A: There is a lot to be grateful for, but I for one enjoy not rushing for the school run and avoiding the morning battles that come with it. Luckily I'm in lockdown with my 2 favourite young people (double edged sword at times this one!) and we are fortunate to have a garden and live just 246 steps from the beach. We had a movie night and (Dominoes) pizza delivered on Saturday, our first take away in lockdown. It was actually a-ma-zing!
Q2. And the hardest thing?
A: Missing friends and family has been the biggest emotional rollercoaster by far. The kids miss seeing their friends and I know they can't wait to meet up – we’ve also had to deal with birthdays spent in lockdown and the disappointment of cancelled school trips. We've been video calling people which has been a lot of fun (I spend most video calls looking up my dads nose, I swear he'll never get the hang of it!) but there's still nothing quite like a hug from those you love and a room full of chatter and belly laughs.
Q3. What activities have your kids enjoyed the most?
A: No amount of bribery could get the kids interested in Joe Wicks, but he has a new subscriber in Mum! My son is at the age where he could literally play Xbox 24/7 – ironically it’s quite social as he video chats with friends gaming but we seem to spend a lot of time trying to get him off it! We’re trying to keep a balance with school work and keeping fit for when his football season starts up again. Lauren is a home bird and had been finding Year 10 a battle, so she is loving being at home and has risen to the challenge of home working with 1:1 encouragement. She attends a special school, who have been very organised providing work, support and weekly welfare checks to stay in touch, and we break schoolwork up with baking or crafts. We've also spent a lot of time in our garden in the sunshine and making the most of walking the dogs.
Q4. Do you have a routine or do you go with the flow?
A: The routine has slipped and everyone has relaxed into lockdown - probably a bit too much, we will need adequate notice before returning to "normality"! There is more routine on my working days and we try to fit everything else around this. Lauren needs a routine but thankfully not a rigid one so we do all the usual things but at our own pace. We are in a little cocoon right now, would people think I'm mad if I said I wish it could stay like this forever?
Q5. How do you stay sane as a parent?
A: My motto is pick your battles - if it doesn't matter let it go. At the moment we're all quite happy and not fed up of each other... yet! I'm lucky to have my kids with me, and to have a co-parent so I do get a break to catch up with my friends on Zoom, have a glass of wine and watch back-to-back box sets if I want - for someone who usually watches very little TV I'm now addicted!
Q6. If you knew another parent struggling looking after their child with SEND right now, what would you say to them?
A: Take every day as it comes and go with the flow. Routine IS still important but don’t fret if it all goes off course, we're all trying our best and allowed to have a bad day. Your wellbeing and that of your child is the most important thing - I find my kids tend to reflect my mood, so use this time to do lots of fun things together or just take a bit of time out - we spend enough time pushing up hill to get things done to a schedule or tick a box. Reach out and chat to a friend, or another parent - we may not be in the same boat but we're all in the same storm (I stole that by the way but liked it, lol!).
Emma, thank you so much for talking to us. We are particularly jealous of your proximity to the sea and your Dominoes delivery! We’re really glad to hear you’re all coping ok. Stay safe and give those doggies an ear rub from us
Clare's story
Story published on Facebook 12/05/20
It's Tuesday again, which means it's time for another of our "Lockdown Lives" interviews! Today we're chatting to Clare from Suffolk Parent Carer Network about how her busy household are coping in lockdown. Read on to find out more…
Hi Clare, thanks for talking to us. First of all then, tell us a bit about yourselves!
A: We are Mummy, Daddy and 3 children aged 14, 10 and 7 who have a variety of additional needs/disabilities. The house feels like a pet shop most days as we also have 1 dog, 2 cats, 2 rabbits, 1 tortoise and let's not forget 1 fish! We also have 2 trains which feel like part of the family as we have 2 serious train fanatics in the house... more on that later!
Q1 What’s the best thing been about lockdown so far in your household?
A: No commuting for myself and my husband, he often works in London during the week and I am often travelling around Suffolk to attend meetings. We aren't dashing about as much now so we actually have time to think about things and aren't trying to cram everything into the weekends.
Q2 And the hardest?
A: Keeping everyone occupied while we are working and trying to find new and interesting things to do. The children often like doing different things or prefer to do things by themselves rather than together so that can be quite tricky to manage. Missing all the people we love, we are a pretty sociable family so not seeing our tribe is really hard. (WE MISS YOU ALL!)
Q3. What activities have your kids enjoyed the most?
A: Baking, crafting and lots of time in the garden. We've made handprint pictures, salt dough shapes, milk bottle elephants and have been learning to draw animals. The Facebook lockdown groups have been a great source of ideas as you would never call Mummy 'arty'! Making the cakes has been fun, eating them has been even better. We are building a train track round our garden so the trains in the family can enjoy some outside time too and the fanatics can enjoy tinkering.
Q4. Do you have a routine or do you go with the flow?
A: We both work from home during the day so we don't have a routine as such other than when we eat as the children are used to eating at a certain time. They are doing a little bit of school work each day but our focus has been on emotional wellbeing and we feel that they are learning lots when we are crafting, baking or in the garden.
Q5. How do you stay sane as a parent?
A: Reading, gardening and being lucky enough to have family,friends and colleagues that I can chat to when I need to let off steam (there had to be at least 1 steam reference in anything about our family!) I'm not sure I have ever been described as sane, but our family life works for us and I don't tend to worry about societal expectations, we do what fits in with our crazy brand of whatever normal is supposed to look like. I won't lie, it’s hard work but in those rare quiet moments when something no matter how small has been achieved it makes the challenging bits a little easier, we work on the basis that 'tomorrow is a new day'. I probably eat too much chocolate as well but don't tell the children!
(p.s the eldest of our clan has just said that my work keeps me sane x)
Q6: If you knew another parent struggling looking after their child with SEND right now, what would you say to them?
A: I spend my days talking to parents as I am one of the Co-Chairs for SPCN. So many things to say - be kind to yourself, tomorrow is a new day, you know your child best, so do what works for you and your family. Don't feel pressure to conform, life can be rewarding but also really tough for SEND families so reach out to the SEND community so you aren't isolated. There is no shame in asking for help or fighting to get it and now more than ever we should be looking after each other. I could go on forever and those that know me will tell you I often do....
Ha! Thanks Clare, we’re really grateful to you for taking the time out to chat to us, and SO impressed by the train track in your garden! We're not even big train fans but now we want one...
Lucy's story
Story published on Facebook 14/05/20
Today we’re chatting to the lovely Lucy, who we know through her work for Suffolk Parent Carer Network. Lucy has two children – Eden, 14, who has severe autism and learning disabilities, and Roman, 9, who doesn't have any additional needs. We caught up with her to ask how things were for them and here’s what she told us:
Q1. Hi Lucy, thanks for chatting to us! What’s been the best thing about lockdown for you so far?
A: Not having to rush around all the time, and having more time to spend together as a family. Eden struggles with transitions like going to school and they affect his behaviour, so we have seen less tricky behaviour from him since lockdown began too.
Q2: And the hardest?
A: Not getting a break! We get a bit of respite for Eden every two weeks, but his needs are severe so it’s hard to homeschool Roman and also deal with all Eden's needs the rest of the time. Both of the children's sleep has been affected and they are settling to sleep later at night, which can be quite hard after spending the whole day together.
Q3: What activities have worked well for you?
A: Roman and I have been doing a lot of baking which we never usually get time to do, Eden isn't interested in helping but he likes to eat what we have made!! We have also done science experiments like making a volcano and a rainbow in a jar, and arts and crafts with items that we have found in the garden or on our daily walk. We have turned our bedroom into a sensory room for Eden - we have put all his sensory toys in there for him, so he likes to spend most of his time in there.
Q4. Do you follow a routine, or go with the flow?
A: I try to keep to a bit of a routine. We tend to do English and Maths in the morning and then in the afternoon we do arts and crafts or baking. We have to keep a routine for Eden as he needs that, so bedtimes and mealtimes are the same as usual.
Q5. How do you stay sane?
A: By making sure I do something for myself everyday. It could be something simple like painting my nails or baking a cake - and a glass of wine in the evening helps!
Q6: What would you say to another parent struggling right now?
A: My advice is to just take each day as it comes. Some days will be harder than others but try not to put too much pressure on yourself. Also - try to enjoy the world standing still for a little while. Before you know it everyone will be rushing around again!
Thank you Lucy, it's great to hear how you're getting on. Those cakes look amazing and we definitely want an invite to one of your picnics, too!
Steph's story
Story published on Facebook 21/05/20
Today on Lockdown Lives we’re talking to nurse and single Mum Steph about shielding, slime and soaps! Read on to find out more…
Hi Steph, thanks for taking the time to chat to us! Can you introduce yourself a little bit to our readers?
A: Hi! I’m Steph, single mother to Ella, who is 4.5 years old and due to start mainstream in September. She has severe epilepsy, a chromosome defection (which she is the only one in the world ever discovered with), dystonia, poor mobility and heart defects. In addition to that, she has been diagnosed with Autism and Pathological Demand Avoidance (PDA).
I work as a nurse at Ipswich Hospital, but am currently off work as Ella is in the shielding category and I’ve enjoyed reading the interviews so far - they’re a great way of understanding how hard a SEND child is to manage during lockdown.
Q2. You’ve got quite a bit on your plate there! Can you tell us what the hardest thing has been for you during lockdown so far?
A: The hardest part has definitely been not being able to have friends round so I can do things like have a shower. Ella is unsafe alone, and it’s difficult to do anything other than mind her 24/7 - I haven’t even been able to catch up on my soaps!! Ella’s mobility has deteriorated since lockdown as she hasn’t been able to attend swimming lessons, physio, walks or anything else. My house has also taken a battering where she’s damaged the floor, the shower and skirting boards in her frustration.
Q3. Lots of things there that many of us take for granted Steph, thank you for sharing the reality of how it is for you. Have there been any good bits about lockdown?
A: The best part has been that I feel like Ella and I have a better bond now – I’ve learned new tactics to help her follow basic instructions through the trial and error of being at home 24/7.
Q4. What activities have worked the best in your house?
A: Slime! Ella has a new found love for slime so I must have ordered hundreds of pounds worth of it to keep her occupied (my garden and house is a mess). She loves playing with sand and slime, painting, dressing up and watching her iPad. Whatever keeps her happy is what we do!
Q5. That sounds sensible to us! Do you have a routine or do you go with the flow?
A: No routine in this house! We go with the flow based on what’s the least likely thing to cause a meltdown!
Q6: As we said earlier, you've got a lot on your plate. How do you stay sane as a parent?
A: Ella keeps me going. If I didn’t stay sane it wouldn’t do her any good whatsoever.
Q7: If you knew another parent struggling looking after their child with SEND right now, what would you say to them?
A: This isn’t forever. Cherish the time together at home no matter how hard it is right now.
Steph, thank you for taking some of your precious time out to chat to us. You’ve given us lots to think about and be grateful for, and we think you are doing a fabulous job. We wish Ella every success when she starts school and we're sure all your colleagues at the NHS join us in thinking you are a very special person. We're also more than a bit jealous of Ella's dress :)
Val's story
Story published on Facebook 01/06/20
Welcome to Monday! We hope you enjoyed a break over half term. We've got three interviews for you this week, we're going to start the week off by chatting to Val. Here's what she had to tell us about her household in lockdown...
Hi! I'm Val - mum to 6 and a Grandma to 2. At home there's me, our amazing Emily, my 16yo son and my niece, who temporarily moved in prior to lockdown and is now stuck here...but loves it!
Emily isn't my biological daughter, but I am her Mumma and adore her. Her birth Mum couldn’t care for her so I offered her a home when she was four months old. She is now three, and I have a Special Guardianship Order for her.
Emily is terminally ill and on palliative care. She is blind, non-mobile, entirely tube-fed and developmentally delayed, and has many medical conditions including aortic stenosis, kidney damage and other medical needs. She is also a warrior who has her own agenda! Emily has completely changed my life, I have learned so much from her and love her so much.
Q1. What’s been the best thing about lockdown for you?
A: Definitely spending time with Emily. Before lockdown I worked full time, so my time with her then was mainly at the beginning and end of the day. Since lockdown I have spent all day, every day with her and I am loving watching her character develop and helping her to continue to learn and grow.
Q2. And the hardest thing?
Not being able to see family who support not just Emily but me as well. I’m lucky to have my teen son and niece here who is also one of Emily’s carers. Emily is definitely missing all those involved in her care!
Q3. What activities have worked well for you?
A: Emily loves to sing and music is a big part of her life due to her blindness. We have every noisy toy we can find and Emily will happily bang drums and bash her tambourine whilst we attempt to sing every nursery rhyme in history! She has also learned to ride her special adapted trike and she is starting to push herself up and down the hallway telling us she is going shopping or on holiday! We do lots of physio – I’ve had to do that as support services have had to stop during lockdown – and she’s been practicing her standing and weight bearing. We spend lots of time outside in garden too, just chilling on beanbags listening to the sounds of the world. Emily has also learned to control Alexa during lockdown... mostly demanding nursery rhymes and spa music!
Q4. Do you have a routine, or just go with the flow?
A: Our routine is slightly set due to Emily's feeds and meds but otherwise we have been quite chilled. We have a community nurse come to the house once a week to change Emily's feeding tube and generally check that she is well. The slower pace is definitely nicer than the rush of pre-lockdown. We are shielding Emily, so we haven't been leaving the house much.
Q5. How do you stay sane as a parent?
A: I'm not sure if I have ever been sane! To pass time I paint rocks - an idea we started last year to let others see Emily's journey. We normally take rocks everywhere we visit as little mementos of Emily being there, and also to places she won’t ever be able to visit - the rocks go on her behalf. They bring a little joy to the world and we love seeing them pop up all over! Since lockdown I also paint anything that stands still long enough ..so far dining room, bathroom, outside walls, garden ornaments and home decorations! We have also learned to make fudge in quite a few varieties - not so good for the waistline! – and hot baths to soak away the day’s niggles.
Q6. What would you say to another parent who was struggling?
A: Reach out. Raising a blind child certainly has its challenges, but we are lucky to have support from organisations and charities that help Emily learn and grow. Emily attends Tiny Topcats special needs group, a charity local to us where she gets to be with other special needs children, and also to Beebops music group. She also started nursery last year and loves being with other children similar in age and learning so much from them. She also is helping the other children to learn about her disabilities :)
There are some amazing support networks available, especially on social media, or offload onto someone outside of your family home. Step back and take time out for yourself, and if need be: cry, shout and scream - you are allowed to and it will make you feel better! Most of all, be strong and keep safe.
Thank you for chatting to us Val, we think you're amazing. Stay safe and well, and we wish you and Emily lots more days of sunshine, singing and smiles together.
Phil's story
Story published on Facebook 03/06/20
We’re excited this morning to be chatting to our first Dad of our Lockdown Lives series!
Phil is Dad to Dominic, 11, who has Autism and general learning difficulties and attends a special school. Phil very kindly took a few minutes out to let us know how they were getting on in lockdown and here’s what he said:
Q1: Thanks for talking to us, Phil. How are you finding things, what’s the best thing been about lockdown so far in your household?
A: The best thing? Not having to get up early in the mornings. I have actually been working from home (yes, I really have!) but not being ruled by the clock and a certain degree of freedom in determining how the day develops has been great.
Q2: And the hardest thing about lockdown for your family?
A: One of the hardest things for us has been the restrictions on leaving the home and also obtaining shopping. Due to his Autism, Dominic has some rigidity around what he will eat and drink, and the lack of availability of some products has been a real issue for him. We’ve missed our friends at Bright Stars Playgroup an awful lot, and also friends that we had made at previous settings like HOPS.
Playground equipment obviously isn’t available, which has been really hard for Dom who loves using it. It would be lovely to get him out in the garden but that’s tricky as he's full of phobias and fears at this time of year.
Q3: What activities have worked the best?
A: All the usual stuff for Dom – mostly iPad and TV. There’s very little else that holds his attention for long to be honest!
Q4: Do you have a routine or do you go with the flow?
A: We generally follow a routine, mostly determined by Dom - he seems to have a good idea where we are in the day according to how hungry he is and what's on the telly!
(Editor’s note: Me too, Dom. Me too.)
Q5: How do you stay sane as a parent?
A: Being honest - wherever it is practicable we give him his own way. If we let him do his own thing, he tends to cause fewest problems and then the household runs more smoothly for everyone.
Q6: If you knew another parent struggling looking after their child with SEND right now, what would you say to them?
A: I would say be flexible!
Thanks for chatting to us, Phil, for representing the Dads out there and for being so honest! We hope things start to get back to normal for you, Dom and for all of us very soon. Stay safe :)
Helen's story
Published on Facebook 05/06/20
We’re rounding off the week and indeed our Lockdown Lives series with a chat to Helen! Helen is a Mum of two including Fred, pictured here doing something we can't quite identify but that looks very creative indeed! Read on to find out how lockdown is treating them...
Hi Helen, thanks for taking the time to chat to us. Tell us a bit about yourselves?
Hi! Our family is Chris (a vicar), me (a practice nurse), our daughter Megan who is 22 and Fred, who is 20 and has Down's Syndrome and Anxiety.
Q1. What’s the best thing been about lockdown so far in your household?
A: Having all 4 of us home together has means we’ve spent positive family time that we were often too busy for before. We have spent a lot of time playing board games together which is lovely (most of the time!)
Q2. And the hardest?
A: The same thing - being all 4 of us home together! Its hard with no space or time away. We live in Felixstowe- a beautiful place by the sea, but we’ve missed not being to go out to see it as we’ve mostly stayed in as Fred is vulnerable.
All of Fred’s activities have stopped – he usually attends Growing Places once a week, has a 1:1 via Direct Payments once a week and goes to college three days a week. He also has overnight respite once a month which we were gradually building up to increase his independence as he wants to live semi independently when he is older. College have been fab sending work and keeping in touch, as have his work placement but it’s hard for him. He doesn’t want to Zoom or FaceTime people , he just wants to spend his time with mostly me, not even on his own. I’ve surprised myself at my creativity but glad I became a nurse not teacher! Our house has become a bit of a recording studio as we are doing live streaming services for church so it can get a bit crazy with that too.
Q3. What activities work best in your house?
A: Games, cooking, colouring and maths have been successes - Fred doesn’t normally colour at all but he’s got really keen since lockdown, especially maths game colouring - I have been astounded at the improvement in his maths skills.
Q4. Do you have a routine or do you go with the flow?
A: We have realised it’s importance since we haven’t had routine! We were great for the first few weeks using a visual timetable and planning Fred’s (and therefore our) time. Over the holidays we had free time and we realised we need to get back into a proper visual timetabled routine. It’s not just Fred who benefits!
Q5. How do you stay sane as a parent?
A: Not sure I am!! My mental health is a challenge a lot of the time but I keep well with medication, me-time and work that helps me focus. I was struggling with my work in a healthcare setting and having a vunerable adult at home at the start of lockdown – I’m now working from home so my anxiety about Fred’s health is less. Finding me time is almost impossible as he goes to bed after I want to and wants to be with one of us all the time. I find not going on social media too much is sensible, as it can make me feel low.
Q6: If you knew another parent struggling looking after their child with SEND right now, what would you say to them?
You’re not alone - find someone who understands. Make space for you even if it’s just 5 minutes in the bathroom!! Don’t beat yourself up, just do your best to get through each day, it’s enough. Lastly, find one thing at the end of the day that makes you smile and focus on that.
Thank you Helen, for your willingness to chat to us and for your honesty. We hope you’re able to enjoy the sea and all the other parts of life again very soon.
