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.
Life with children with EDS can be at times stressful in the last few weeks
we have had 3 opticians’ appointments with Robyn due to a turn returning in her
left eye. She had new stronger glasses to try to correct the turn but this has
been unsuccessful so she has been referred back to the hospital to see if we
have any options left to try to fix the turn. The appointment came through for
next week already which is fast. Surgery is an option but Robyn is not keen on
having a third eye surgery. I also found out she doesn’t have proper 3D vision
as she should have and there is nothing that can be done about it which is a
shame but as she will never have been able to see any differently, she will
never know any difference. She has 2 hospital appointments in the next month
for her dental problems. She is waiting for surgery to remove 4 teeth that are
stuck up in her gums which you can see in the picture below, then she will have 2 years of braces to try to get herteeth into the normal positions. She is also being referred for counselling to deal with her anxiety which she has suffered with since she was very small. So, shehas definitely been keeping us busy lately.
As for Lewis he has been referred to Endocrinology to see if he fits the criteria for growth hormone treatment as he is still groeing at a very slow rate. He was also diagnosed with severe constipation due to EDS this is a common problem for EDS patients as the condition can cause the gut to slow down its usual processes. He has been prescribed two medication for long term use. He had a week off school while we gave him a ‘clear out’. This is likely to be a lifelong problem for him; I know that problems related to them having
EDS will probably crop up throughout their lives which is a shame for them both
as the condition can affect many internal organs and many of the joints in the
body. Robyn’s pain has been increasing lately in her legs so we are going to try
some new physio exercises and I have been trying some massage to see if that
helps. Every night she takes a hot water bottle to bed to ease the pain on some
of her joints.
I wish I could take away all of the problems the kids have, give them a more ‘normal’ childhood. They just get on with it and other than the pain Robyn suffers they hardly complain about all the problems they have. Im proud of how they put up with all the medication they have to take and the symptoms they put up with. All three of the kids are good, kind and helpful and I’m proud of them all.
StrangeGenes 