Special Education Needs

So, a report lands on our floor today, the postman was oblivious to the fact he was delivering the most important report Chloe has ever had. 11 pages discussing for the first time all of her needs in education BUT this report also focuses on her holistically. Who she is, what her aspirations are, her strengths, her weaknesses and most importantly what should be in place for her to have a fair chance at an education. The only issue here is she is 13 years old and it all feels too little, too late if I’m honest. While this is THE report we have needed for her since she started school it’s more than a little bittersweet because who knows what could have been had she had this support when she was younger. It’s got aspirations and steps for her and the people around her to take to support those aspirations. These aspirations are focused on all areas of her life education, mental health, social and also focuses on her independence. It is a good report but do you know what the problem is? It is a piece of paper that will only mean something if the people that matter enforce the recommendations in it. The problem here is I have little faith that this is what will happen. This report is from a qualified Educational Psychologist and was commissioned by the local authority but I don’t yet believe that they will accept and follow it even though I know by law they should. This is because I have seen them ignore such reports for other children, this is disheartening and, in all honesty, makes me want to give up.

I have been told repeatedly how Chloe was failed, let down, ignored or ‘missed’ but no one has ever taken responsibility, not once. I want to rage at someone, lay the blame on them. But on reflection there is no one person or even group of people to blame. It’s a systematic failure from a system that is not fit for purpose, and daily this system let’s many other children fall through the cracks and pushes families into feeling alone. While families are fighting for the best for their child, often feeling isolated and like they are failing, do you know what often no one tells these families? You are not supposed to do this alone, there is supposed to be professionals backing your child and family. They are supposed to be helped to decide what the best support is for the best outcomes for their child. You are not supposed to do this alone! There are people being paid to ensure that you don’t do this alone, I often wonder where they all were for the years we have been doing this alone.

So, when someone finally steps in or steps up however you want to look at it, it can feel like a huge weight has been lifted from your shoulders. But and here is the catch, you are still going to have to fight, argue and chase people for the very thing your child had a right to all along. A fair chance at accessing an education and I mean really accessing it not just showing up to school every day and doing their work. I mean being given a fair chance to understand and benefit from their education. I will stress it is not this way for every child who needs support, some children will get every type of support they need and will have a fair chance, overwhelmingly this is not the case unfortunately. Equal opportunities for children with special education needs and disabilities doesn’t mean they will get an equal outcome, what is needed is fairness. My child may need more than your child to achieve their best outcomes. If we give all children exactly the same opportunities and support one child may thrive while another child struggles to keep up an inevitably falls behind. What would be fair in this situation would be to provide all children with what they need to thrive and achieve, that may mean some children getting more than others, not because they deserve more but because this is fair, this gives all children the opportunity to achieve the best they can.

I know your reading this and probably thinking she is banging on again about the same issue but here is the thing, this is the rest of these childrens’ lives we are talking about. It has been proven repeatedly that the earlier and more appropriate the support a child is given the better the outcomes. So yes I’m going to be banging on about this for a long time because this isn’t going to change overnight. Yes, I’m angry for my child but even when she is an adult and this battle with this system is over I’ll still be arguing for the right support for every child and family that is still to come up against the broken system. It is not about being proved right or getting praise for trying to make the world of special educational needs and disabilities a better place it’s about what’s FAIR.

So yes, I am lacking faith, energy, sleep and f’s to give at the moment so for today I’ll put on some music, cry in the bath, drink some gin and I’ll be her mum but I will be ready to burn the world for her tomorrow if I have to.

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.