Left in Lockdown – Jacob’s story

In response to our survey on life in lockdown for families with disabled children, we asked parent carers to share their experiences.  Here is Jacob’s story, as told my his mum, Teresa…

“It was really good to read the article about the lack of support for disabled children in Lockdown. It was something I would have never expected and was very disheartening to experience. It was difficult for everyone to adjust to such strange and unusual times much less for children who many are used to their set regular routines. For this to be pulled away suddenly and for the schools to not want to reach out and try and support has been dreadful.

“I felt the need to share my experience. I have 8 year old twins and my son Jacob has special needs. They attend a mainstream school which has a very high number of SEN children, also a high number of specialist teachers for SEN and they did not do as we expected at the start of lockdown and offered no immediate support for them. Of course schools would have been under pressure to navigate the best way around such a difficult time and being faced with a situation never been in before. It just seems the SEN children who obviously need extra support in school so the extra support needed to be continued at home too was disregarded at the start of lockdown.

“I felt it was a challenge to communicate with the school about the desperate need for some interaction which became apparent and needed for my son. To help children understand the sudden change in their world.  My sons learning delay and not being able to understand what was going on was not easy and I knew he would benefit from seeing familiar faces linked to school to help him as he was struggling.  For a simple video message from teachers who are familiar with the behaviours, melt downs these children can display with their lack of communication and frustrations, to make some instant contact to ease any frustrations which they know would possibly be happening. No support was willingly given and anything to help ease had to be initiated by parents. I had to reach out to find ways to help. I did not understand schools not wanting to revise safeguarding policies in a time of a crisis to simply gain permission from parents to make direct interaction easier between a child’s one to one support for example, for them to see familiar faces linked to their school to help them? To be able to use social media platforms as a means to reach out where needed and to be creative with the possibilities to use it effectively to reach out.  The wellbeing of children or policies to adhere to being of more importance?  I then realised that the laws around SEN children had been relaxed and their EHCPs not to be considered a priority. It seemed the schools used this to sit back and not to offer the support which they would know is needed by the children but were given the option to relax and they did. SEN children have budgets in place to assist with their learning and support needed in schools and this seemed to be disregarded also.

“It has highlighted the lack of consideration and inclusion with children who have disabilities. That in a time of crisis they could disregard them. Three months later the Local Authorities are only now stipulating to schools what support should be given to children who have EHCPs. There has been children who became very unsettled and upset during this time which could be been avoided if thought was given.

“I am glad to share with you. I hope the Government will be made aware of this situation, the need for it to be highlighted as a problem which it is. To help move it forward to make essential changes in the system where more consideration, awareness and inclusion is needed for children with disabilities.”

In response to our survey on life in lockdown for families with disabled children, we asked you to share your experiences.  Lisa told us about her grandson, Noah…

“Noah is 4yrs 10months old and has Autism, Global Developmental Delay and is in the process of being assessed for ADHD. Normally he would attend his special school 5 days a week 8.30: pick up and 3.30 drop off.  In between that time he would receive multiple therapies – speech and language, swimming, soft play, outside play, Occupational Therapy and he would be in a fully inclusive educational environment where even communication is by professionals who have been training for years to provide things like BSL, Makaton, Pec’s and who teach us carers the best way to help our children with the very specific difficulties they have. Us carers were also attending a course in February that teaches us more about Autism and how to help our child.

“Since lock down, there has been absolutely nothing except confusing and misguided information through the daily briefings held by the government. Information given to us that told us at the beginning that our children with EHCP and special needs schools would not be closed because of the impact it would have on the most vulnerable in society. Wrong, our school closed its doors to all but key worker children on the same day as typical schools, but what that address to the nation did was tell the rest of the country a lie, and that the government were looking out for our children when the reality was far from that.  

“When Noah’s school closed its doors, he not only lost all his therapies which the school provided, he lost a place to play outdoors. Because of Noah’s lack of danger awareness and his flight risk – Noah will run away from you regardless of roads, cars or ponds (usually towards these to jump in). Noah cannot be left on his own and needs to wear a harness at all times. So when school shut down, he lost his outside space to run and be free, to climb and run and jump, all of which he needs not just as part of his childhood but as part of his basic needs to gain the sensory input on his body which allows him to feel calm and relaxed, as calm and relaxed as he can be given that Noah never stops from the second he wakes up to the second he goes to sleep. Due to his flight risk, School was the ONLY place he could enjoy a freedom most parents and children take for granted. Closing the parks and outside equipment meant we couldn’t even use them with him on his harness as we normally do anyway. He had nothing.

“Noah normally lives with his mum, in a small mid terraced house and she has no outside space apart from a 1 meter by 1 meter square for bins to sit. After 4 weeks in lockdown, my daughter and Noah moved in with me. I live in a mid terraced house with just a 3 meter by 3 meter square outside my back. However what I did have was a bin alley that ran the length of the street and had metal gates which locked at either end. I decided that given the unprecedented circumstances that we could use this, and we bought a few items for him to play in, but money is tight and space even tighter.

“I tried asking the family support worker every week from the start of lockdown if she knew of any organisations or council run groups or children centers who might be hiring out or lending out toys. I know it was a lot to ask given we were in the middle of a pandemic and nobody knew what they were doing really. I just hoped that as days turned into weeks, and as my beautiful 4 year old grandson regressed with his negative behaviours not seen since he first started school last year, that one day soon, the council or government would organise something for our kids struggling. But no, I watched as my grandson had meltdown after meltdown, sometimes we would just cry together. He started banging his head on walls, trees, and punching himself with a closed fist in the face, torso and legs. It wasn’t heartbreaking, there is no word for what you experience when you see your beautiful grandchild resort to this kind of behaviour. My soul was being destroyed every second of every day.

“There are three adults in this house, and one young child, and I can say we are struggling to see a light at the end of this long dark tunnel we have found ourselves in. I had some understanding for the council and government at the beginning as things were unsure of, however, over 3 months into things, and where are we at now? The same dark hole we have been digging ourselves into. The weathers changed for once, and while playing in a bin alley is by far the place I envisaged my grandson playing in, surrounded by two streets worth of every bodies rubbish, flies and goodness knows what, but at least it was outside. Now it’s raining, and unless we want Noah to meltdown continually, I will have to go out for hours and get wet, as I’ve done before. I could put him in his pushchair recently given to us through the council run wheelchair services, but you don’t get a rain cover with the pushchair – and due to spending an enormous amount of money to try and have activities for him to do throughout lock down, we do not have the money to buy the rain cover. Even if we did, the pushchair provided by the council has a missing bolt and the harness is unusable as the straps are faulty or badly designed and the use it was given to us was to give Noah a safe and secure – tight place to relax when he becomes overwhelmed outside. Within 3 weeks this pushchair had failed and Noah had fallen out because of these straps. However, the council run services which would deal with this are all affected by Covid-19 and not functioning – which the council ask us to understand as again, these are ‘unprecedented times’. His review for a pushchair that will be safe will happen goodness knows when, it seems this department is not up and running so it seems it is not a priority for the council. The council run department that I’ve been waiting to hear from since January about a safe car seat for Noah, is also not functioning I was told yesterday. I cannot take him out in his pushchair, I cannot take him out in the car safely, unless I can heavily press on his harness clip to squeeze him in, and even then he can get his arms out and that’s the reason he requires an assessment. None of these departments are running….or at least aren’t running on a level that would make a difference to our life in lockdown.

“Another department of the council’s that is not functioning is the office which deals with Short Break assessments, so that families can receive something called Direct Payments. We applied for this at the very beginning right before lockdown, our family support worker from school told us to not panic that we had no toys or stuff for Noah to do because the Direct Payments should help and would come through pretty quickly. We are 4 months later now and still no word, that department isn’t able to function due to Covid-19.

“However, I have found a department that is running, and that is the waste collection department. A waste collection crew tried to take Noah’s toys from the back bin alley, a neighbour managed to stop them. So I called the council to explain expecting some consideration, the same consideration I had been giving them. No, there is nothing she or the council can do, I am not allowed to use the alley as an extension to my property, that is the law and the rules I have to follow. If I leave them out, the collection crew will take them I’m told and they will fine me. I leave them out at my own risk she tells me and there is no way to put a note on the system. I cannot believe the same council which expects consideration from its residents, the same residents they are abandoning in the middle of this world wide crisis. I am to understand under the circumstances why the council cannot help my grandson with his special needs, even though him and many others have EHC plans, which as far as I know are legally binding documents.

“I find it disgusting beyond words that in this day and age that the laws set up to protect these vulnerable children are being thrown away like our kids are not important to them. I know I am not alone in this and many families are in the same boat as we are, but it doesn’t help. The council and government say they care, but where is the understanding and where is the help now we are so far into this. I can take Noah into a crowded shop, or park, but he can’t go to school with the other eight children in his class. How in any sense of the word be lawful?

“The council and the government need to be held accountable for this. If they cared, they would be working on giving me the funding I am eligible for through them. Even a letter could have been sent out, they do have files of all the children with EHCP’s, so why have they abandoned us, we are right here?”

In response to our survey on life in lockdown for families with disabled children, we asked parent carers to share their experiences.  Here is Emma’s story…

“I have three children. My eldest aged 16 and my youngest aged 4 have autism. My 14 year old is neurotypical. My eldest’s main difficulties are social related issues. There are others as well but this one affects her the greatest. She also likes to be very organised and enjoys structure and routine. While school is very difficult for her, the routine is an important part of her managing day to day. Initially, when we were teetering on the edge of lockdown and nobody knew what was really happening, this was a particularly stressful time for her. The unknown, the uncertainty, the inability to plan ahead. As soon as definitive decisions were made, her mood improved greatly and she created a new routine for life in lockdown. But here we are again, with talk of schools returning and being drip fed information…maybe this, maybe that…the up in the air concept is building her stress levels again. And now she has something else to be anxious about. A distinct fear of germs she never had before.

“My youngest has similar traits to his sister but his biggest issues tend to be sensory, control and change. He has hyperacusis, problems with textures and smells and going outside terrifies him. He’s living his best life getting to stay home everyday. The only place we’ve managed to get him to for the last year is nursery. And that’s been a physical battle wrestling him through their doors when he is in a full meltdown. So, with these external stressors removed and able to manage things better at home in a nice relaxed, controlled environment it’s been lovely. However, he is due to start school this year. He was due to have an enhanced transition. He will still be starting school but now with even less of a transition than standard!! And after what will be 5 months of indoors, how do I convince him to go back outside?!! His nursery/school have tried to be as helpful as possible with what we can do in the future but it’s getting him to that point that’s going to be problematic!

“My middle child is possibly suffering the most. She is social, she loves school and she is smart. She needs a break from her older sister who relies heavily on her for support socially. She’s happy to oblige her and a lot more patient than most 14 year olds might be but she needs proper conversation and her own peers. She needs a break from her 4 year old brother…4 year olds are demanding anyway, never mind throwing something else in the mix! But she isn’t getting one. She’s not being challenged enough academically and her motivation is starting to drop along with her mood. She needs that break.

“My husband was furloughed at first but returned to work and I’m left looking after all three, trying to assist each emotionally, academically and physically! Each with differing needs. It’s lonely. I haven’t heard from any of our support networks since lockdown. We’ve been left to deal with it and it doesn’t give me any hope that we will receive any support to adapt when we start easing out of lockdown. Lockdown has been hard on EVERYONE but for families with anyone who requires some form of additional care it’s harder in a different way and the prospect of moving back to normality is incredibly daunting.

” I hope that the government can see that a new type of support is something that needs implemented to help families like mine cope with a situation we have never had to before.“

‘The weekend presents itself as the toughest part of my week to navigate. 

 I get that Monday feeling on a Friday afternoon as I try and juggle the expectations and responsibilities that lay in the coming 72 hours. The Commodores classic 1970’s hit song, Easy like a Sunday morning, was on one of the first albums I ever bought. This jazz and soul compilation was indicative of my awkward, younger self desperately searching for who I really was.

 Every week, as the weekend approaches, the swaying vocals of ‘Easy like Sunday morning’ seem ever more distant and incompatible with my life now. As the parent of a child with complex needs, my week is upside down.

With ever shrinking appropriate short break provision and rejected requests for support, I am left juggling limited energy, the desire for quality family time, the need for rest, heightened expectations and just wanting a glimpse of normality for all our family.

 This series of images captured by Nicola Parry at 8am one Sunday morning as a part of a larger project share the reality of what ‘easy’ looks for families like mine.’ – Rachel

Photographer, Nicola Parry explains:

The aim of my project was to document the realities of an ‘everyday’ which for some, is a much greater struggle than for the rest of us.

I have taken away a great deal from my experience but most affecting has been the realization that the ‘difference’ I have observed is permanent. This is not a difference in terms of the love, fun and laughter, or in terms of nagging children to get their homework done and help out with chores; but in terms of the huge level of responsibility and necessity to be available, alert and organised every waking moment – as well as some moments when not awake. 

I hope my images will provoke thought and consideration and help to raise awareness of the secret lives of others.

For more about Rachel’s Secret Life and Nicola’s work, please see our previous post and visit Rachel’s blog and Nicola’s website and blog.