**This is a very wordy blog post and not craft related - just so you know!**
She is in this hairy transition period of coming to the end of school and starting college. She is also trying to think of things to do for the future but when we try and explain that she is unable to do those things, it makes me feel like I'm the wicked momma. You are supposed to let your kids dream and wish and hope but the raw facts of some matters are just too damning. The other week, out of the blue, Ellie thought it might be a good idea to try working in a Library. I thought about it and save for heavy books, she would be perfect. I suggested she try volunteering first so that she could prove her willingness without being set back because of her problems. And lets face it, her only problems are muscle weakness and confidence where a library is concerned. Plus she wouldn't really need her wheelchair for the job either.
So I rang up the connexions team at our local authority to see how we should approach it. The guy at the other end was enormously helpful. This was a huge relief as normally cases like Ellies are just chucked by the wayside. You know why don't you? Aaaaah yes, the dreaded "she doesn't have a diagnosis so we point blankly refuse to help you - now be off with you, you vagrant, you are ruining my life". Obvs he didn't say that but when people point to this lack of diagnosis, they may as well be saying that. He did, to be fair, come up with a few suggestions; of which we have tried or will attempt to try. Then suddenly, he asked if we had a social worker. I said "No, didn't know she had to have one really".
He then gave a heart stopping "ah".
I know that "ah" sound.
Its one that crushes my chest and sends me crumpled to the ground. It means there is a problem.
And then he asked "Have you contacted Embrace?". I said yes and we were informed that they could not help us. Embrace is a local charity that offers advice, advocacy, support and information for people with disabilities. But when they came to take our details in our home last December, they never even clapped eyes on Ellie. And because she doesn't have a diagnosis, they fell short of routing out a solution for us.
**insert tears and snot here, I'm getting a bit choked up**
So back to the Connexions team. I am a massive fan of the Connexions team in Wigan. One of the team who liaises with Ellies school has been AMAZINGLY supportive. I can't credit her enough even when she has suggested things I knew were outrageous beyond comprehension, I also knew she meant well. Anyway, the guy thought that, seeing as the book stopped at the point where "she doesn't have a diagnosis", I should try Embrace again to see if I could further pursue help. After all, the education system recognises that Ellie has special needs as she has a statement and attends a complex needs school and a special needs college during her mainstream syllabus at school. Surely if the education system recognise she has special needs, why does the fact that she doesn't have a diagnosis stop us accessing different outreaches? Its like Ellie is only special needs when it suits the school when it comes to finance but not for help elsewhere - does that make sense?
So I rang Embrace again. I have to tell you that when I ring these places, I never start with any aggression or grievances or axes to grind. After all, if you need help, the nicest way to ask is with good humour and a kind heart. The woman at Embrace was super nice. I mean that. She was patient and listened to what I had to say and did lots of checking for me. She was an absolute diamond. She mentioned that when Embrace came to our house to take Ellies details (remember, they never saw her!), the came back to the offices to do some ringing around. They contacted aiming high, the befriending service (who can no longer help) and the social services. Apparently the social services had that letter sent to them on 7th dec and still haven't come back. And they are the people we really really really really really need. They are the ones who can be assigned to Ellie to draw up a case study and present, in BLACK AND WHITE, the true and official evidence of Ellies issues. Apparently, its the black and white that initiates action for most outreaches. Not a worried momma on the phone asking for help. Worried mommas are a NOTHING in this world. NO. THING. But having yourself a super social worker is like having a fairy godmother by your side and who is on your side.
In the same call, the helpful lady at Embrace suggested that she put Ellies name forward for Pathfinder. I had NEVER heard of it before and as she went down the list of what Pathfinder was, the more I got excited. In a nutshell, Pathfinder for Ellie would be like the second coming. Because Pathfinder, it would seem, is usually awarded to kids with a clear cut diagnosis and where all routes lead to carefully managed solutions. Pathfinder follows a child's twists and turns both educationally and medically up until the age of 25. Its paves the way for kids and adults that follow her so that information and access to outreaches are tried and tested for them. Basically Ellie is the guinea pig (for want of a better word) but with funding to open the right doors. Its monitored, tracked and recoded so that mistakes are learned from and successes are triumphed over.
For Kids like Ellie who fall into this vast wasteland known commonly as the "Grey area" and subsequently awarded the Pathfinder - well, it would be explosive. Wouldn't it be fantastic if Ellie was the first ever child to go through Pathfinder (with her strange array of ailments that have no diagnosis) and that she got the right help at the right time with the right people without me ever having to SCREAM to get it in the first place? I would sever both my arms to live in a world like that.
So the call ended like that and I was just so so excited.
Then Belles and I went to the Library to do some GCSE Science revision. Her GCSE's are coming up very soon and a fear for her results. Her expected grades are not flashy but they are passable and that ok. However, I know. I repeat. I KNOW she has more to give. In some ways I want to blame the education system about her lack of care for her school work because what I taught Ellie in an hour and the enthusiasm she gleaned from it was a shock to me. A real shock. I'm talking nuclear proportions style shock (he hee....I learned about atoms and neutrons and protons during that session too!). If only Ellie would come home from school that enthused but whats worse is, why didn't I realise all this with her sooner? I mean, I realise the education system stinks a little. A school has to educate no matter what the child's ability is but they cannot simply nurture each child individually. Kids are either gifted, mainstream or under achievers. The people that benefit most from school are the mainstream. Gifted kids get frustrated and under achievers just struggle to catch up. I know this, I was a pupil myself....I saw this with my own eyes. And it wont ever improve. I trusted the system and whilst I don't think the school has mistreated her one iota, I do think that perhaps teachers should talk to parents and not just one night a year at parents evening - what the hell can that achieve?
Oh I don't know....its a mess. This kids has so much potential and all she needs is guidance and a fun way of teaching. A relaxed way and in the quietness of a library with no distractions from unruly kids and teachers shouting. I'm distraught that I never considered homeschooling before. But then I have to think that I had to work - jesus, where is the balance in all of this?
Anyway, as we wrapped up the revision session (which I have to say is educating ME too!) Ellie approached the Library pod and asked the guy if she could make enquiries to volunteer working in the Library. I've got to say, our Library is a listed building and is a beautiful little place - light and airy, to say its listed. He looked at her and said "No, we don't do that". He was really nice but from the way he was speaking and reacting, I could tell he thought she was a "kid". I didn't want to interject. I REALLY DID NOT WANT TO....I SWEAR, but my Momma instinct took over and I said "She is deadly serious. She is 16 and wants to volunteer in a library one day a week starting September". I think the shock of me revealing her age prompted something in him. He was a really nice guy and asked Ellie to fill out a slip of paper. The next thing we knew, the Library Manager came over to speak to her. She was patient and kind and explained that this Library does not accept volunteers but another one, nearby, does. Trouble is, its a bus ride away and the bus stop is half a mile from our house. So she couldn't do it independently as she doesn't have a motorised chair. Lets not ignore the fact she has barely left the house on her own in her life. Can you feel this frustration, I hope so....I do hope so. If only to help share the burden. Nevertheless we shall find a way but hopefully they will find a way....I'm holding out on some positivity on that score.
This leads me to today. It gets more tricky...........
On a Tuesday Ellie attends a complex needs school. The reason being is that she wasn't coping with the year 10/11 options syllabus. The school decided to place Ellie in a complex needs school on a Tuesday for maths and functional life skills. And on a Wednesday, she attends a special needs college for Floristry. The reason why they did this was because she wasn't joining in with the syllabus which meant that they had to "house" her elsewhere. Not exactly the most thrilling of choices but still an education of sorts. She is doing REALLY well in Floristry and should achieve a level 2 (which is pretty awesome for a kid who started a college course in year 10!). She does enjoy floristry but knows for a fact that she could never get a job in a florists because she can't tie the wire or tighten the green tape or use secateurs, Of course she could hope for a very empathic Florist shop but lets think about this REALISTICALLY for a minute.
Aaaanyway. The complex needs school is a lovely place. In fact its a very happy and positive place. I know Ellie enjoys the lunch time pampering session but she does think that the work is easy. She is always first to finish and often helps the teachers with things when she has no more work to complete. The rest of the day is spent doing things like shopping lists, adding money, making lunches and small meals. To me, that's just a waste. A waste of revision time, at least. I can totes teach her those things myself. In fact, we do. So today, I pulled her out to do some more revision from home. God knows she can attain much higher grades by doing so. I know it. I will make it happen. I WILL. In the mean time, whilst she was googling Sankey Diagrams and Energy Efficiency, I rang the school to see if I could officially/lawfully pull her out (on a Tuesday) between now and the end of term. She only has 6 weeks left as it is, i hardly think its a crime especially when its for her benefit. The teacher I spoke to was fantastic and amenable. But it looks shady right now because Ellie has a statement and pulling her for one day might affect that funding. This disturbs me as she doesn't get funding for the complex needs school (unless they transfer it from her mainstream purse). And the help she does get at the special needs college is full time (an assistant is sent from her school for the entire day) but Ellie tells me that the assistant often helps other children in the class thus diluting the funding which is primarily earmarked for her (essentially making ellies statement funding a right balls up as it is). I hope to goodness we get permission to Home school her on a Tuesday for revision. I need to make this work because I care very much about this untapped potential that we have seen over the Easter Holidays. Her enthusiasm for Science has increased so much. And we could make that happen with English and Maths too. We know it. I KNOW IT.
And here endeth the 3874673564315671 chapter in life and trials of Momma to a special needs kid (when its suits, anyway!).
Can you share your thoughts as a frustrated Momma?
Would love to hear from you x
Click here to subscribe to my newsletter
Click here to subscribe to my newsletter