Tag Archives: disability

The System is Broken!

It’s been a long time since i have written a post, this whole Covid situation has meant there has been very little to say. In the background I have been busy trying to ensure the kids have been getting some form of decent education while homeschooling which was one of the hardest things i have ever done. I am very lucky to have Chloe and Lewis still in full time education during this lockdown and Elliot doing 1 day a week, we made the choice to send them back to school because of their Special Education Needs. Without proper full time education they would risk falling further and further behind, it has taken a lot of work to get the kids to the level they are at now and missing any more school would be detrimental for them.

Chloe is still attending her Pupil Referral Unit for children with mental health needs and disabilities and she is thriving, it is a small school with amazing supportive staff. Her ability to deal with her anxiety has improved so much since she has been at the PRU, the nurturing and supportive atmosphere at the school has changed how she feels about school so much. We are currently applying for an Education, Health Care Plan for her to try to get her educational, social and emotional needs met in school. She wants to learn and puts her all into trying but many difficulties hold her back. Having spent 10 year now dealing with the system that is in place to support children with Special Education Needs in both a personal and professional capacity I can honestly say I believe it is broken. I hear about parents everyday who are fighting for their children’s basic educational needs to be met, this system is not working and too many children and families are being let down. We are incredibly lucky to have Chloe in a school that is nurturing and is working hard to support her but this is a short stay school and may not be a permanent placement for her.

Unfortunately we have been let down at every step of the process that we are asked to follow, I have had professionals who work for the local authority tell me they cannot believe how she fell through the cracks. I have been incredibly lucky to meet some professionals who care and they are guiding me through a process that is at times confusing and feels so much more difficult than it should be. Even now we can see that the system is trying to place accountability on someone else or another service to try to get out of their responsibility to provide the support Chloe needs in school to have a chance to fulfill her potential. This is the system put in place to protect vulnerable children but it is oftentimes inaccessible, confusing and leaves parents and families with no choice but to be adversarial with professionals who’s job it is to support these children. I have heard from parents and carers who feel intimidated by the professionals who are supposed to support children and families, parents/carers who do not understand the language being used and the acronyms thrown at them. They are inexplicably expected to be knowledgeable enough to understand a system that these professionals have spent years training and working in. Parents/carers are often asked for their views and these views are then ignored, they are told ‘you know your child best’ and ‘every child is different’ before swiftly ignoring your input and applying what feels like the same standards and expected outcomes to every child. It feels like your opinion and often your own child’s opinion on a matter that can affect their whole future is just taken as a tick box exercise, parents/carers can spend hours filling in questionnaires and researching wanting the best outcome for their child and never see any consideration given to the thoughts and feeling that they were asked for.

There are some amazing, supportive professionals and non professionals out there and they are battling the same broken system that the families are fighting. We are not an underdeveloped nation, we can support these children and their families it is within our understanding and capabilities as a country to do the right thing but it’s not happening. Every time I hear a story of another family in this situation using the words ‘fighting’, ‘battling’ and ‘not listening’ it makes me despair, getting support for your child should never have to include these words. Inevitably parents/carers discover that the reason for the difficulties in getting the support in place comes down to one thing only MONEY, under funding and budget cutting are the root cause. Resources are stripped year upon year and when there was insufficient resources in the first place stripping them over and over again feels so counter intuitive. I have spent a lot of my time during this pandemic studying Specials Education Needs and Disability to broaden my knowledge and to help with my own struggle to get the right support in place for my children. It appears that there is a chain of problems that cause children and families to be let down, Government under funds Local Authorities and services who in turn have to under fund local services and in the end the people that suffer are the children and services who desperately need the services. This cycle feels as though it has been going on since the beginning of time but has been better and worse under different political parties and I wont use this opportunity to bang on about my dislike of a Tory Government or we could be here for a long time.

I came to the conclusion that I was living in ignorance of just how difficult it can be for children and families, I knew there was serious problems with funding and services but until you see the families affected by the issues you have no ideas of the damage this is doing. There are families in crisis, these families inevitably end up needing intensive support from far more services in the end than they would have if they had just been able to access the support needed in the first place. If instead of being placed on waiting lists up to and over a year long or being told no support is available these families were supported from the beginning these families may never reach a crisis point, this costs far more to local authorities and the Government in the long run. Besides the financial sense this makes surely from a humanitarian point of view offering support before crisis makes more sense, the trauma I have seen in some families caused by lack of services and support is most often entirely avoidable. It seems inhumane to me to wait until a family hits this crisis point before stepping in to offer support and services, allowing so much damage and stress to happen before accepting a family ‘qualifies’ for intervention is unnecessary and cruel. One of the biggest issues is unless it happens to your family or you see it with your own eyes you cannot possibly comprehend what damage can be done.

Every child deserves a fair chance at a successful and happy future but currently a lot of lip service is being paid to achieving this but nowhere near enough is being done to ensure this is a realistic outcome for many, many families. There are people out there, professionals and none professionals fighting everyday to improve the system and the services available and I couldn’t be more grateful for that but we need so much more, more people fighting, more people supporting those who are trying to change the system for the better. There is a long way to go, this is a marathon not a sprint but I have so much respect for the families and the professionals who are pushing for change, asking for better and are not willing to give up on the children and families that are only asking for the same opportunities as any child who doesn’t face these difficulties. When it come down to it all that families want is the best outcome possible from the education system for their child because they love their child, it’s not an unreasonable request to ask for your child to be supported when they have additional needs or disability so as a country we need to do better.

Positivity Isn’t Always the Answer.

I wouldn’t say I put on a brave face, but I like to think I keep a positive attitude, but again lately the mask is slipping. Another surgery in 8 days, more medication added to my daily routine. I am tired, I’m tired of operations, medications, appointments and keeping up a positive attitude. This next operation will be the 4th in less than a year and I’m tired of them and I’m tired of feeling the way I do. My life feels like week after week of sorting out mine and the kid’s medications, going to mine and the kid’s appointments, worrying about what is going on with mine and the kid’s bodies, the pain I and Robyn are in. This sucks.

There is nothing I can do to change any of this, and I know that but that doesn’t mean I can’t be tired of it all. It’s not like I don’t have a great life, I do. I have 3 amazing children and a partner who tells me every day that he loves me, I have amazing friends who are always there to listen. I don’t need more than that, but I do need less of the medical things. I would do anything for the kids, there is nothing that I wouldn’t do to help them and to try the medical problems they have from disrupting their childhood. I think having the same condition as them mean I know where they are heading, I know what might be coming for them. All the pain I have every single day could be their future and I hate knowing that more than anything in the world.

I spend a lot of time trying to be positive and actively trying to make the best of this situation for me and the kids but I’m really tired. The pain disturbs my sleep every night and getting out of bed in the morning is harder than you can imagine. I just need a break, mostly from my brain and the constant worries and planning of life around all the appointments. I talk to my friends a lot about the kids and my health and then spend a lot of time feeling bad for moaning at them and not having more interesting things to talk about. They are fantastic friends and listen and advise and I couldn’t be more grateful, but I wish I had other things to talk about, but all that stuff is my life. I am very aware that here I am complaining again but I have to get this feeling out or I will go crazy.

So, what can I do? I have no idea at the moment, September is a month of lots of changes the kids start a new year at school. Robyn started high school which caused her and me a lot of anxiety. She has already been bullied for her speech on her second day, her eyesight is declining all the time and she is having more and more problems with blurry vision. The pain in her legs is getting worse and her gastric reflux is causing her more pain her chest every day and there is nothing I can do. I try to keep positive for her and tell her I understand but all I can do is give her pain relief and worry about how much worse this could get for her. Can you imagine starting high school as a transgender child with eyes that are wobbling and turning in all the time, with a speech impediment and learning disabilities. High school is hard enough without all of that, I just want to take it all away for her. I’m her mother it’s my job to fix things for her but I can’t.

When you have children, you expect to worry about them, you expect it to be hard at times. I never expected the guilt I feel from not being able to make things better for them, I never expected to have to worry so much about their future. They may never pass exams or find it easy to get a job. Robyn will always find it hard to understand the world and the expectations of her from society. Her anxiety will make life so much harder for her and I can’t fix it. I am raising good, kind children but I worry that won’t be enough to make it easy to survive in the adult world. Positivity isn’t always enough; hope isn’t always going to be enough. So, in all honesty I don’t know where I’m going from here. I’ll keep trying to do whatever I can to make life as easy as I can for them all because that’s the best I can do. I’m not sure it’s going to be enough but I’m going to keep trying to have positivity even when I’m tired and I’m not sure if what I’m doing is going to help.