Friday 31 March 2017

Our Journey with Global Developmental Delay

Young Mum

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.

Global Developmental Delay

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.

Global Developmental Delay

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.

Global Developmental Delay

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. 

Global Developmental Delay

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.

Global Developmental Delay

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.

Global Developmental Delay

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.

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