A Little Life Update

It's been all systems go behind the scenes over here at Life Unexpected, so here is a little life update to keep everything ticking along nicely!

In early December Luke and I set the date for our wedding! I was meant to do a whole post about how we got engaged a year ago on Christmas Eve, but unfortunately it is 13 months later and I never actually did *slaps hand* - I will get there!

We knew the exact venue that we wanted almost straight after we got engaged, in fact it was the only place we actually went to look around. We just knew it was where we wanted to have the day straight away. It's local to where we live which is perfect for friends and family within the local area, but it's also just far enough away to really make use of the beautiful rolling hillside of Bredon.

Bredon Hill is one of our favourite family walks, one we have walked many many times, and the venue of Deer Park Hall falls just below the hills peak in beautiful rolling hillside with a park full of deer!

We have a lot to sort out this year what with Luke's flat and the whole issue with the lease... We currently have 2 solicitors on the go trying to help us work this worm hole. One of the solicitors is pursuing a potential negligence claim with the solicitors Luke used to purchase the flat back in 2016. They never once advised against the lease or advised that the ground rent was onerous (which they would have been aware of and should have advised on!).

The second solicitor specialises in leases and lease extensions, and is helping us pursue an extension to reduce the ground rent to a peppercorn rent (as you can see it's been all systems go around here.... And this really is just the tip of the ice berg!).

We should have an update on the whole sorry scenario by the end of this month and know how to progress. 

Christmas has been and gone, and although it feels like a lifetime ago we all had a really lovely time. On the run up to the big day we spent lots of time together as a family and had a trip to the pantomime over at Malvern Theatre to watch Aladdin.

We popped over to Webbs of Wychbold for a spot of ice skating and even caught a showing of the Muppets Christmas Carol at our local cinema.

Unfortunately Luke had to work this year, but Father Christmas delivered in time for Leo to open his gifts while Luke was still at home.

We spent the day at my parents eating far too much food and playing with all of the wonderful new additions that had appeared under the Christmas Tree.

New Year was a quiet affair and was quite simply one for the 3 of us, we saw the New Year in together and then made our merry way to bed.

Right now we are in the final stages of planning a rather epic family trip for the February half term, on the 16th all 3 of us are flying out to New York for 3 days. We will be staying near Central Park at The Wellington Hotel, and we are all very excited for some amazing adventures.

We figured after all of the disappointment last year, what with the not buying a house thing, the miscarriage and just trying to keep looking on the bright side, we all deserved something to look forward to.

As it happens this trip actually ties together beautifully, we should have been having a baby this month, but instead we are going to head state side and make some amazing family memories and remember the little life that we never got to meet.

We have purchased the New York City Pass so that we can fill our boots with all of the attractions on offer, so everything that I couldn't do last time will be seen and experienced this time with both of my boys!

If that wasn't enough... When we get back from New York we will be staying a few days in London where we will be showing Leo everything that he has not yet experienced in our wonderful Capital City.

That isn't the end of our family trip though... For one final shabang we are jetting back off again, but this time to Venice! None of us have ever been to Venice or even Italy for that matter, so we are really excited to see what it is like.

Lux will be heading off to the kennels for 11 days, we have our ESTA's in place, up to date passports and all we need to do now is sort our insurance!

Aside from all of the travelling, I have just this past week had Leo's draft EHCP through. I have gone over the plan with Leo's school's SEN and together we have made some slight changes before we accept the plan.

It's simply a case of waiting now to see what comes back and hopefully just accepting the EHCP plan so that it is ready to go.

So for now we are just looking ahead and putting one foot in front of the other. There is light at the end of the tunnel and this trip and the wedding planning are going to keep that smile firmly on our faces.

Fighting for a EHCP and Mediation

Shortly before schools finished for the summer holiday, our then SEN teacher was working hard towards gathering and submitting evidence for Leo's EHCP (Education Care Health Plan), you may recall that I actually attempted to do this for Leo myself back in 2017.

Back then I hit a stumbling block, I can only assume within the school as they said that at this point they could accommodate for Leo's SEN nee

ds within the current academic setting. I wasn't convinced but agreed for the time that I would let the decision ride. Flash forward 2 years and we are talking potential EHCP's again, only this time the school are suggesting that it may be beneficial.

Of course I backed the decision entirely, the evidence gathering began and was submitted just before the end of the Summer term. I didn't hold much hope of actually achieving the EHCP as I had heard that they were like gold dust, but I did hope that with Leo's Tourette Syndrome diagnosis we may have more of a chance of obtaining it. 

Summer flew by and we were soon back at school and ready to kick start Year 4, Leo's tics had really faded to nothing over the summer holiday, but with the academic year starting again we fell back to earth with a crash. 

A month later we had the letter that I had been anxiously awaiting, a letter sealing our EHCP fate. 

It had of course been denied. 

Another stumbling block, another no, another door shut in our faces. 

Another case of Leo being on the cusp, a seemingly typical child, beautifully behaved, but had SEN needs that were beyond your typical school child, not severe enough for a 'special' school, but a delay none the less.

As I sat there reading the letter that had been issued, I decided then and there that this wasn't the end of the fight. We would appeal, we would go to mediation and if needed tribunal. 

I had a meeting with Leo's new SEN teacher who is quite frankly amazing, luckily for us she really knows her stuff having been on both sides of the coin. She once worked for the local authority and met with families to decide why and how they should issue an EHCP, and she now works as a SEN teacher within our school academy. 

We formulated a plan, we met with the Local Authority who went through their decision, it became apparent that it was a lack of evidence that had resulted in our 'No'. We had 3 months from the date of the letter to go to mediation, they told us that we should leave it as long as we could in order to gather further evidence that could potentially provide a different outcome. 

We did just that, and a few days before the appeal process closed forever I sat and composed an email making sure that I included everyone I needed to within the email chain. To go through the mediation process we had to contact a mediator, I emailed the Two that were recommended on the letter, and quickly heard back from one of them.

Before I made a decision on who I would prefer to work with, I spoke with both of the mediators on a separate basis. I opted for a man named Charles, he was full of knowledge and came with a great reputation, he role would be to listen and essentially lead the mediation meeting, he would pose his own questions and give structure to the agenda. 

Charles said something on that very first phone call that really stayed with me 'Remember when you were at school and posed with a maths question? After all is said and done, the working out was always the most important part. If you got the working out wrong, the answer would be wrong'. Charles emphasised the importance of evidence, things like costed lesson plans, he stressed that schools were so busy teaching the kids, that their working out was often lacking, and the lack of evidence was often the reason for the negative outcome.

Wise words!

It was hard getting a date in the diary being so closed to Christmas, but we eventually nailed down as many of the required attendees as we could, and confirmed the date for Friday 13th December 2019.

We met at a local hotel in the library, I brought my Dad along for moral support as Luke was away with work. Charles the mediator was present along with our school SEN and a lady from the local authority.

I had prepared an A4 page of my own thoughts and feelings which was essentially a short over view of Leo's entire educational background. I spoke about how the initial concerns were raised at Leo's 2 and a half year check and how those concerns were then highlighted at Nursery level and followed him into his school life. 

Our SEN teacher then gave her evidence, Charles did his bit and within an hour the Local Authority had decided in our favour and granted Leo the EHCP that we had been fighting for. 

It was such a productive afternoon, and I am still in disbelief that we managed to change their minds and get something that will be so beneficial to Leo throughout the rest of his education.

I do wish that this had been granted years ago, I kick myself for backing down and not going with my gut, but we got to the finish line in the end. 

For Leo this now means that he will have his own funding within school to help him achieve his individual goals, it will stay with him until he is 18 and leaves school. It means that Leo can attend any school I feel is best for him, even if it is out of catchment. We apply and it's almost a give in that he will get in.

We should have our draft plan with us by the end of January, at this point I will have another meeting with Leo's SEN teacher and we will make sure the plan is what we need. I have been advised that even if amendments are needed to the over all plan, to accept it and make the changes at a later date so that at least the ball is rolling.

I finally feel like we have got somewhere, I have spent years banging my head against a brick wall with no real outcome, but finally I have made enough waves to ride all the way to the shore. 

It's so important to always keep fighting, to always stand your ground and not stop talking until you are listened to. 

The Umbrella Pathway Referral

This is something that has been a long time coming. 

The Umbrella Pathway Referral.

It's something that I feel that I have had to really fight for, really stamp my feet for and very almost throw my toys out of the pram for. 

Finally Leo is going to be seen and assessed by a team of people.

 They will be able to look at Leo's needs and they will be able to tell us if there is an official diagnosis for why Leo struggles academically. 

Before I go into this latest update, I wanted to re-cap on just how far we have come, the hurdles we have had to clear and the frustrations we have faced.

Below is the series of posts I have written about our journey over the years, I would give an account right here off the top of my head, but these posts say it all, and in a way that I don't think I could re-capture if I tried, because all of these posts were composed in the wake of events in real time, so the emotions and thoughts captured are completely raw.

The Two and a Half Year Check

The One with Leo's Hearing Test

Frustration

The Health Visitors Assessment 

The Second Nursery Meeting

Speech Therapy

Outside the Box

Take Your Time

Year One Transition

Dyslexic?

Global Developmental Delay

Ready To Learn

Our Journey with Global Developmental Delay

What is The Umbrella Pathway Referral? 

The Umbrella Pathway Referral is a Neuro-developmental assessment that helps to assess, manage and care for children and young people who present signs for developmental delays and disorders. 

The pathway provides an entry point (the initial referral), an assessment process, a diagnostic process and management plans with support once a diagnosis has been provided at the end of the assessment process. 

The Umbrella team is made up of:

- Paediatricians 

- Clinical Psychologists

- Child Psychologists

- Educational Psychologists 

- Speech and Language Therapists 

- Occupational Therapists 

- Integrated Specalist Support Services 

How to Refer

 - GPs 

- Health Visitors

- School Nurses 

- Community Paediatricians 

- CAMHS Professionals 

-Speech and Language Therapists 

-Occupational Therapists 

-Local Authority Specialist Teachers (ISSS Service) 

-Educational Psychologists 

This is where it starts to get interesting, especially if you have read the above posts, because you will have seen how many times I talked about getting a pediatrician referral. The Health Visitor at Leo's 2 and a half year assessment put it off in the first instance. She failed to follow up, I was going to book a Doctor's appointment but the Health Visitor said she would re-visit with Leo (a year later than she was supposed to) and if a referral was needed, then she would do it. 

Guess what? 

She REFUSED to refer him.  

Since 2014 Leo has been under the care of Speech and Language (Right up to December 2016 when he was discharged), why didn't they make the referral? 

It seems that despite concerns from all over the board, the health visitors original report, nursery, school,  I have had to really push to get a referral.

A GP Umbrella Pathway Referral 

This brings me up to Friday 16th June when I pulled Leo from school and took him to the doctor's surgery, where I had booked an appointment with our GP. I gave a very brief overview of where we were at now and handed over the latest Educational Psychologist report along with the Learning Support Report I had received very recently.

I had seen my GP about Leo's development before, at that point I was told to give him time... and I did just that. I guess part me just hoped that it wouldn't actually come to the referral and Leo would catch up before it was essential. Yet here we were back in her office, and I had told myself that this time I would not be fobbed off. This time I was going to be walking out of that door with the referral in place.

The GP said that this referral should really come from the school, she said that it was a faffy process to go through at the surgery. Of course by now I couldn't care how faffy it was for anybody, I just wanted it done. 

So I posed the question 'but can you do it!?' To which she replied 'Yes, I can but it would be better coming from the school as they have more evidence and know Leo.'

In the next breath I asked her to do it, because the school had pointed me in the GP's direction, and again it felt like the book was being passed. No one wanted to be the person to refer Leo. Why it all has to be such a battle I will never know, why people want to keep seeing me banging my head against a brick wall is beyond me. 

I had come prepared with up to date evidence and had more PDF's  ready to go on my phone if they were needed. The doctor made a call and had a lady prepare the forms for me to sign. I went along to the waiting area and signed those forms there and then, I handed over the evidence I had brought along with me and the referral was made.

Both the GP and the lady who walked me through the application process commented on how lovely Leo was, how well behaved he is and told me that it was obviously not a behavioural issue, and that's precisely it. Leo is golden, his behaviour is impeccable and I cannot fault him, he's one of the most caring little people that I know (and that's not just because I am biased).

It was just the other month that I went along to a meeting in regards to the EHCP (Education, Health, Care Plan) process, Leo had come out in a rash on that day so I couldn't send him to school. Instead he came along with me to this meeting, where he sat patiently for 2 and a half hours (there might have been a number of biscuits and the use of my phone) while this meeting took place, and he was incredible. In fact everyone else in attendance said so.

The Umbrella Pathway Referral and the EHCP

I am hoping that this referral will go hand in hand with the EHCP application that is currently ongoing. I am hoping that the assessment within the Umbrella Referral will give us answers and enable me to cater more support to Leo and his education. 

The EHCP evidence will all be submitted in the Autumn Term (some point in September 2017). Leo will be a Year 2 by this point and the developmental gap widens yet again. I need all of this to happen so that I can set Leo up to succeed in wake of the health visitor setting him up to fail. 

The health visitor was supposed to be the pillar I could rely on, the pillar that Leo could rely on, but when she dropped like a domino she caused a ripple effect that has continued to fall until there was nothing left standing. 

No support, no guidance.

It was just the blind leading the blind.

Going through a similar experience?

The best advice I can give anyone who is in the position I was in, or continues to be in, is look at your options. If you aren't being provided with any support or you have no idea what the next step should be, this could be a good starting point:

- Speak to nursery/early learning environment about concerns. If your child is still under the care of the Health Visitor arrange a meeting between the nursery and HV so that they can liaise with each other and come up with the best strategy moving forward. 

- Don't be afraid to chase people - Keep phoning/emailing until you get the result you need.

- Speak with school SEN teacher about how they are catering to your child's needs and what they could be doing, mention an EHCP and see what they think.

- Education, Health and Care Plan (EHCP) - This involves a process of gathering information from the relevant people or agencies, including the views, interests and aspirations of the parents and child or young person. The needs assessment will help to determine whether additional provisions need to be made through an EHCP. These plans replace statements of SEN and Learning Difficulty Assessments (LDAs) for children and young people with the most complex needs, from birth up to the age 25. 

If like me this has never been recommended to you, you can apply for it yourself if you have copies of the evidence to demonstrate that it is necessary. You would need to notify the school of the application as they will need to collect and provide the additional evidence. 

You can find out more about your local EHCP offering by visiting your local Council Education Department for your area. If you put 'Council Education Department' into Google followed by where you live, you should be pointed to the right place, and the EHCP's usually fall under the SEN (Special Educational Need's) category. 

I will be doing a post all about EHCP's in the coming weeks.

- Push a Pediatrician Referral Through -  If you have concerns, or people involved in the education of your child are highlighting concerns, you can do this yourself. Book a doctor's appointment, go armed with all the evidence you can carry and insist that they make the referral.

I just wish I had stamped my feet a long time ago, I have always been afraid to nag or stand on anyone's toes, but the reality is that keeping on top of people and sometimes going over their heads is the only way to move forward. 

I will be sharing a post all about EHCP's in the coming weeks, and I will put as much information as I can to try and help you with your own applications. 

At the end of the day we just have to keep fighting the good fight, and provide our little people with everything they need so that they can achieve the very best of their abilities.

Our Journey with Global Developmental Delay

I'm under no illusion that people look at me and they see just another 'Young Mum', they see me rock up in my sports kit at the school gates and think I'm just another 'young Mum that doesn't work'. It's easy to form a quick judgement on how you expect someone to be, from how they look and dress. Now I am not saying that everyone does this, but we all know that it happens.

What most people don't realise is, that i'm self employed. I work from home. I'm a blogger, A freelance writer if you will. I might not always look like I'm overly articulate, but I have been known to be able to string a few words together.

I have always had to fight to get Leo the support he needs in order to learn. Being the baby of the year and having been let down in the past by a certain health visitor who will remain anonymous, I guess you could say that I'm a little bit over protective when it comes to my boy, and my trust in people who are supposed to help us has of course lost its sparkle.

We attended Leo's parent's evening at the start of March, and it was something I had been genuinely dreading. I know it sounds crazy to feel so anxious about meeting with your child's teachers, but when you know you are going to walk away with more concerns, sometimes you just feel like burying your head in the sand.

This year the parent teacher meetings were taking place in the school hall, I sat and watched all of the Mum's and Dad's smiling and rejoicing in their little Einsteins. They all seemed to be sailing through their Year 1 goals. Now don't get me wrong, Leo's report was good. Leo is progressing in his own way in his own time, his classmates are progressing on one line steadily together, and Leo is on another line progressing steadily on his own.

I have said all along that my one priority above anything and everything else is, that Leo is happy. That Leo continues to be happy and everything else comes when he is good and ready. We have made progress with our letters, with our writing, with our numbers and counting, we have made progress with our confidence and Leo is always incredibly well behaved and a joy to have in the classroom.

He might not be where the other children are, but that little man of mine is an absolute credit to me. At the same time as celebrating the steps forward Leo is making, you are also listening to the ways in which Leo is different to his peers, how they won't be submitting him for his phonics test, because it might stress him out unnecessarily for something that he won't pass anyway. How he is spending his mornings in the reception class in an attempt to help him get to grips with what all of his peers achieved last year. How now even in that situation, Leo is still working to the lower end of the abilities in the reception class.

I left that meeting torn with pride for just how amazing and resilient Leo always is, and worry. Pure gut wrenching worry, because if their is such a noticeable divide between Leo and his classmates now... How on earth is he going to be able to move into Year 2 next September?

Following that meeting my mind was racing. I reached out in a Global Development Delay Facebook group. I needed to speak to parents who might understand, and who may even have advice. It was here that I learned about a EHCP - Educational, Health and Care Plan.

It was a Friday afternoon in March that I first heard about the EHCP, and I found it rather hard to believe that no one had mentioned it to me within the nursery, school or SEN environments. Everyone has always been very quick to point out that Leo works below the levels of his peers, that he is globally delayed across all areas of his academic life, but no one has pointed out that I could apply to get Leo additional support in place.

I sat down and began writing a number of emails, emails that I hoped would ultimately help me get additional measures in place for my little man moving forward. I spent hours writing, hours sourcing and scanning the documentation, the evidence that I wanted to include. I fired an email off to our local educational authority and another to the educational psychologist who had met with Leo back in June 2016.

I left no stone unturned, no detail was left out. I was determined to fight for my boy, when we have had so many downfalls and letdowns in the past. I am a firm believer that if you want something done, then you best get to doing it yourself.

Timeline of events

Leo's 2 and a half year assessment - 3rd January 2014

We met with our health visitor for the standard check up. Red flags were raised in regards to Leo's development. I was advised that Leo was delayed in multiple areas and the health visitor asked to see him in 2 months time in order to repeat the assessment. 

Nursery - Start date 20th January 2014

Following the assessment I got Leo a place at Nursery in order to socialise him and hopefully help him catch up on the areas of concern. They highlighted their own concerns in regards to Leo's development: 

- Leo didn't give eye contact. 

- Leo had poor facial expressions 

- Leo was globally behind in all developmental milestones

Speech Therapy 

Leo was on the speech therapy books from 2014 through to 2017 when he was discharged. 

No contact from our health visitor - December 2014 - December 2015

2 months passed and I heard nothing from our health visitor. I called up the main office multiple times leaving voicemails and no one ever returned my phone calls. I booked Leo in for a hearing test independently, I wanted to get the ball rolling and eliminate potential issues hindering Leo's development from the list. Leo's hearing was confirmed to be fine. 

Our health visitor never got back in touch with us again.

Chance meeting with the health visitor - December 2014

My Mum knew our health visitor from her year's of childminding, and by chance they ran into each other while my Mum was visiting the doctors surgery. It was discussed how disappointed I had been with how our case was handled, and how angry I was that Leo had slipped through the net. In my personal opinion this is the responsibility of the health visitor, who was supposed to meet us again 2 months later to allow Leo to complete the assessment again. Which of course did not happen, and therefore resolutions and assistance which could have helped Leo hit his milestones were prevented. 

The health visitor seemed worried that we were still having concerns regarding Leo and arranged to come to the family home and visit with him, to finally carry out the assessment again. I told her that I wanted a referral to the pediatrician so that we could finally get the ball rolling  so that measures were in place for when Leo started school in September 2015. (we had visited with the GP in the time frame since the health visitor had last seen us, but no referral had been made, it was in the pipeline).  

The health visitor performed the assessment using Leo's personal objects and not using her own standardised equipment. 

She told me that the issues she had discussed with me before were no longer cause for concern and that he was absolutely fine. The report that she gave me completely contradicted the original report that she had filled out just short of a year ago, she told me she had absolutely no concerns what so ever. No concerns over his speech, she even went on to say that he was a right little chatter box and wasn't even really behind on that front any more. She told me that she wasn't going to be referring him because there was absolutely no need, and that the Pediatrician would laugh at her for putting Leo forward when he was quite obviously developing and happy.

The health visitor read the reports provided by nursery stating their concerns and she disagreed with their professional opinion of Leo being put back so far in his developmental milestones. The health visitor told me that that Leo is not behind at all, he is catching up and is actually operating in the capacity of a 4 and a half to 5 year old. She said that if the nursery are grading these reports as they were (around 20 months behind) then there is something wrong, either Leo isn't as happy at the school as we believed him to be, he was shy, or the staff needed further training. She made me promise that I wouldn't worry, that she was certain that he was just a normal 3 year old boy who was going to excel at school.

Contradictions over the health visitors assessment with nursery

Nursery couldn't believe that the health visitor could have scored Leo so highly when they were charting Leo so much lower because of the delays being displayed in the nursery environment. They asked if the health visitor would visit Leo in the nursery setting, to which she refused and even told the nursery that they needed further training on the matter if they couldn't see that Leo was achieving the milestones expected of him in his early years targets. 

Starting school - September 2015 - Reception

Despite nursery's concerns and us seeking help, Leo started school with absolutely no support measures in place. As Leo was so far behind his milestones before he started school, Leo has continued to fall further and further behind his peers.

That very first year at school was a huge learning curve for Leo, and he has struggled every step of the way. The school do as much one to one with Leo as they can and without this he would find the school situation even more difficult.

School made a referral for an outside educational psychologist to come into school and observe Leo.

June 2015 - The educational psychologist 

In June the educational psychologist came into school to spend the afternoon with Leo. He compiled a report.

Year 1 - September 2016

Leo continues to fall further behind at school, while his year one peers move onto more demanding work, Leo is having to go and work in the reception class as that is where his ability lies. A recent parent's evening with one of his teachers highlighted that even now as a year one pupil, he is working towards the lower end of the abilities in the reception class, and that he could realistically still be charted against the early years milestones. 

Applying for a EHCP

That Friday evening I spent hours at the computer wanting to capture absolutely everything that could help Leo qualify for a EHCP Assessment. I finally clicked send not short of 1am Saturday morning, and on that following Monday, I called up chasing my email just after I had dropped Leo at school.

At this point I hadn't mentioned anything to the school, as they had never highlighted this as an option for us. I spoke to a lovely lady on the phone, and it happened to be the same lady who had picked up my email. Before I knew it I had the application forms in my inbox, I spent the new few hours putting as much detail down on paper as I could.

Then I got a call from the school...

The educational psychiatrist had called them in regards to my email. and they were now calling me to arrange a meeting. I took the opportunity to bring SENCO into the loop about the EHCP, and immediately I felt that she had taken my efforts the wrong way. It was never about me going behind anyone's backs, it was me trying to do my best by Leo.

It was about me worrying after parent's evening, me worrying about his future, and just wanting to finally get somewhere for him.

The meeting was the first of two, the first with the SEN teacher and Leo's class teacher. The second with SEN and the educational psychologist.

The educational psychologist has been out and spent an afternoon with Leo and has seen for himself that Leo is moving forward with his learning, but confirmed there is a 12 month delay between Leo and his peers. This latest report will go towards the evidence of Leo's EHCP which could bring in additional funding and potentially provide Leo with his own one to one assistance.

For so long I have navigated my way through this whole situation just hoping it will get better, hoping that putting my trust in the professionals will be enough. I have been scared to stand on anyone's toes, but I have realised the people who shout the loudest always will get heard. Me whispering my thoughts and feelings has got me nowhere, and now I will continue to shout for Leo.

I am not just some young Mum, I am Leo's Mum and even if I do the school run from time to time in my sports kit, it does not deter from the fact that I can, and I will kick some bum with what I have to say in order to help Leo reach his fullest potential.