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?”