The start of year 3

Leo is now in year 3, where did that time go? 

It almost feels like we get comfortable with the class and teacher and then BAM, another year has rolled around and the change is on the horizon again. 

I know that we are supposed to roll with the punches and welcome change, and I know that the children are meant to be the ones who dread the return of school... But I can't help the feeling in the pit of my stomach that materialises at the 'back to school' thought.

Let me explain why. 

Leo has always found school hard. He has overcome more than his fair share of hurdles, and do you know what? He does me proud each and every single day. But those hurdles continue to throw themselves into Leo's path, with each year at school and the demands and expectations of him becoming more, I worry about what the coming year will bring. 

At 7 Leo can see a difference between himself and some of the other children, he knows that he finds the day to day tasks that much more difficult, and that in itself is hard to bare witness too. 

The summer has highlighted a couple of avenues that I feel I need to explore for Leo, but right now I feel that to voice what those concerns are, may just lead to me prematurely putting a label on that dear boy of mine, so until those mountains can be climbed... I am just going to leave it there, and hope that I can share more in the coming months. 

Now don't get me wrong, I am not opposed to having an official diagnosis, but until it is that, official. I don't want to use any terminology that could be incorrect, because I don't think throwing these words around should be taken lightly.

For me Year 3 just seems slightly more daunting, because that means when this year is up he will be going into year 4, and then after that the very final year at this particular school, and this thought scares me so much. It scares me more than it would scare the average parent, it's not just a concern of a new school, new teachers and children, it's a deep set worry that he is going to find this even more difficult.

I guess now he is getting older too I am also concerned about overstepping my place, so some things may always have to be kept back somewhat.

Despite my concerns, September 4th rolled around, the summer holidays had once again vanished in the very blink of an eye, and I found myself walking up to the school gates just as I did on that very first day 3 years ago, only this time Leo is not holding my hand and probably never will on the school run again. On this day he confidently walked in through the gates and ran off to find his friends.

The first few days seem to have gone well and we are getting back into a routine, but I am already counting down the weeks until the half term break rolls around so that we can enjoy the Autumn weather and hopefully get out and about. 

Until next time....

A New Found Confidence

Leo is now 6, and you can really see just how grown up he has become. I have found myself at a crossroads in terms of what I can share online, of course I will continue to share his journey, but when I post things now I have to sit back and consider if Leo would want me to share it, would what I write or the video I post embarrass him?

As with anything I think it is very important to be careful with what you do post online, you just need to read about the Dark Side of Mummy Blogging over on the Daily Mail to see why...

It's for this very reason that I unfortunately cannot share the video of Leo dancing like a champ to Despacito (but I will be saving it for his 18th Birthday!). In all the years of being Leo's Mother, I have never seen him move the way he does in that video, and I slyly managed to point the camera in his direction and get some rather beautiful footage, but I know that he would hate me to publish this, and it is for this very reason that I won't be.

That's something that has really progressed this year, and that is Leo's confidence. I have been amazed to watch him singing and dancing in his school assembly and then the Nativity play over the festive period, and that has just continued to blossom.

There was a point that Leo would have just stood there and not taken part, and that is what makes this video of Leo singing and dancing to Despacito so special. When I showed it to his Granny and Dad, neither of them could believe it, his Dad even rang me up from work to ask me how on earth I had captured such a display!

This confidence is pushing Leo to try new things all of the time, his swimming lessons are coming along beautifully, he's given Taekwondo a try and he even wants to get on a Football team and take part in football tournaments over the summer holiday. 

This year at school has been a changing point for Leo, and I genuinely believe that it is his fabulous teacher who has been the pivotal factor in this. She has been incredible, kind, firm and fair. She has focused on what Leo can do, and not what he can't. She has given him time, supported him , and been an incredibly positive factor in his life. 

In return I have seen Leo progress and start to enjoy learning. His reading is coming along all of the time and just last week he smashed a spelling test on the numbers One through to Five, and he only got 1 of those wrong. If you had seen how hard we practiced for this test, you would have witnessed how difficult Leo found it, you would have seen me writing in Leo's spelling book, that despite how hard we had tried, it had been a real struggle. 

So when his book came home again that night, I honestly didn't expect to find such positive news, but there it was. The practice had gone in, even if I didn't think it had. 

Leo is still delayed (whether it is classes as global development delay, I don't know), and the delay is about 12 months at this stage, but when the school report came out I couldn't help but beam with pride. Leo's teacher had wrote some absolutely lovely words, she spoke of how he was a credit to his Dad and I, how she has enjoyed teaching him and how he is always happy and well behaved. 

It is these qualities that I focus on, so even though he is not where all of the other children are, for me the absolute gold of that report is that Leo is a well liked, polite and happy little boy. I don't think his teacher will realise just how proud reading that report made me, and I cannot thank her enough for the time and patience she has had with Leo this year.

I will be sad to see Leo moving out of her class as I genuinely believe that it is because of her that Leo has made such good progress this year, and she was the perfect teacher for him, giving him everything he needed in the school environment. 

I know he will definitely miss her too.

I am excited to watch this confidence and desire to try new things develop, and I am so very much looking forward to the summer holiday's with my clever, little man.

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.

Sticks and Stones

This morning as I walked Leo into the school playground, he stayed that little bit closer to my side. He saw the other children playing a game of chase, but he stayed at my heel, staring out over the playground glassy eyed as he watched his classmates running around. 

I got down to his level, I asked him what was wrong, why didn't he want to go and play with the other children? He told me that one of the boys doesn't like him, and he never lets him play. Right then and there, this broke me. This one child in particular seems to pick Leo up and drop him just as quick, on the days that the child in question has been nice to Leo, his smile couldn't be any bigger, but the majority of the time, Leo is singled out by this one particular little boy.

It was just earlier this week that Leo came home from school and asked me about his freckles. He has a beautiful array of freckles all over his nose and just under his eyes. Just like myself and his Dad. He asked me why this child didn't like them, and went on to explain that he wasn't allowed to play the game, because of his freckles. I sat Leo down and told him just how beautiful his freckles were, and that only really beautiful people are bestowed with them, and this seemed to put a smile back on his face.

Leo finds school hard, just like I told you here. I would hate to think that he was struggling with the social aspects of school as well. He always seems to have friends and plenty of people to play with, and I am told that he is always active at playtime. What I don't want is any child to start knocking his confidence, I don't want anyone to make Leo feel inferior and to make him doubt himself.

I am always looking for new ways in which I can help Leo in all walks of his life, whether it's encouraging him to give new things a try, or helping him unlock his mind, and open himself up to new challenges that might present themselves, and I know that I am incredibly lucky to have such a kind and caring individual in my care.

Since we moved out over last Summer, I have been sourcing many at home teaching aids so that I can help Leo catch up and become more confident in his studies, and therefore more confident at school with his peers. We got some early years books for Leo to work through at home, and I even made sure that Leo's new high rise bed had a desk, so that we can sit down and work through everything together. 

While I was sourcing ideas for Leo's room, I came across Teacher Boards which had an incredible selection of products right up our street. What I have been thinking about doing is getting my hands on some Ideapaint, which is essentially paint for your walls, that turns the finished creation into a dry wipe whiteboard!

We currently have a small art easel that has a white board and a chalkboard, but how much more amazing would it be to have a much larger space to practice Leo's letters and numbers, and start putting memory to the test with simple spellings!

I love hearing that people can see change in Leo this year, that they can see he is making progress, but as important as education is, I care less about how Leo performs against other children, and more about how kind and considerate he is about other peoples, and other children's feelings. 

Leo is the kind of kid who will think about how words and actions make somebody else feel, and he has often come home and told me about how certain children have said things to other's that has made them feel sad, and he knows that things like that shouldn't happen. He knows right from wrong.

I hope that Leo realises that he is an incredible little human, and I hope that he doesn't let silly little boys dull his sparkle. 

Ready to learn

Leo has been back at school a month now, although it has to be said that it feels like so much longer. We have settled back into a routine, which is in fact a whole new one since we are now in our own home together, and this new set up is proving to be really helping that beautiful boy of mine, he's flourishing in a way that makes my heart sing.

In 4 weeks the little boy who never wanted to sit and read to me, reads each evening without any fights or any upset, his eyes sparkle when you cheer him on and praise him, and he just keeps going until he reaches the very last page. The little boy who didn't ever want to practice his writing, loves to show me the new letters and words he is learning to put together, he smiles as he perfects the technique and marvels at the markings he has made on his art easel. The same little boy who used to stay by my side in the school playground now parades himself around with the other children like an aeroplane.

They are just simple things to outsiders looking in, because these are all things that their children did in their reception year, but Leo didn't. In Leo's reception year he was classed as being globally delayed, and we had to jump through hoops just to even keep his attention on the task at hand. This new school term he is a completely different child, it's as though a switch has been flicked inside his head, and he's suddenly ready for school and he's ready to learn. 

When I got back home with Leo last night, I checked his reading record just as I always would. I opened it up and had a look at the notes that the teacher makes about how Leo has read at school that day. The words almost jumped off the page at me 'Leo read this really well. Leo made his sentence!'. The book was called 'The Play', and it's got some longer sentences than he is used too, so to see that he has not only given it a try, but read it really well was like all my Birthday's coming at once. 

Leo read the book twice last night, once to me and then later on to his Daddy when he arrived. We both sat there listening to our little boy reading. Really reading. Hearing how his voice flowed as the words left his lips, watching the expressions that danced across his face was just beautiful. 

When you have a child who is behind the other children, you grow a thicker skin. Parent's evenings, teacher meetings and educational psychologists all drumming it into you that your child is not achieving the same milestones as other children his age, it penetrates your skin like a knife and it cuts deep, really deep. It hurts and you really have to fight back those crocodile tears and save face to just get through those meetings. I have become so used to hearing what Leo can't do, I am always so taken a back when I hear positive feedback. Not because I don't think Leo is worthy of it, but because I am so used to hearing the concerns and worries, that now when I hear positive and encouraging feedback, I feel like my heart could burst.

I was talking to the head teacher of Leo's school yesterday, as I haven't really heard anything since Leo has gone back to school, I didn't know whether they were seeing the same changes in him that I was, I didn't know if they could see him really trying his hardest. The conversation was a positive one, and they too can see that Leo is suddenly taking flight. They can suddenly see the willingness to learn, and they are grabbing the opportunity with both hands. Just like we are at home. 

They are talking about letting Leo spend a few mornings in reception, just to help him catch up with his peers a little more. Now that he is actively absorbing information it will be beneficial for him to go over some of the lessons from last year. I am so happy that he is getting the opportunity to catch up, and I cannot be more thankful to the school for all that they have done for Leo.

We have implemented so much at home and I am always trying to find ways to make learning fun for Leo. I think the biggest change for us, and the biggest factor that has encouraged Leo to give learning his best shot is a mixture of things. We have given Leo the time, to ready himself, we have purchased fun learning aids such as the easel, we now live in a quiet home just the Two of us, where we can spend quality time without any disruptions. We have reward charts in place and at the end of this month, if Leo carries on doing the very best he can, we are purchasing him his treat. 

I made a promise to Leo before he returned back to school at the end of the summer holiday's. I told him that if he really tried his hardest and allowed me to help him, I would find the biggest Nerf Gun I could get my hands on for him. This incentive has really driven him, and as he has fulfilled his end of the bargain, I most certainly have to make good on my promise and deliver.

Incentives seem to really drive Leo to try, so I am going to make sure that we keep setting these exciting goals for him, and in turn he will not only reap the rewards of learning, but he will get a treat from Mummy and Daddy too.

Global Developmental Delay

I have always shared Leo's milestones here, it has been our sacred place to speak about his achievements, the things he says and the things he does. It has also been our place to talk about the difficulties we have experienced over the years, and it seems that those same difficulties are still following my little man around.

I always find it hard to put into words when I talk about what troubles Leo, and this is because he is just a normal little boy. He looks like any other happy child, he sounds like any other happy child. He loves like his heart might burst at any given moment, and he cares deeply about his family and the people around him. I may be biased, but he is a beautiful little human.

This is why I find it so hard to put his struggles into words, because how can someone so loving, so normal, so beautiful have everything he needs in all of those areas, but struggle so much with academic learning? How can that same little boy be classed as globally delayed.

I always knew school was going to be a struggle, I mean how could it not after the last couple of years of being told he was so behind his peers? First it was the speech delay, then it was his social interaction and now it's everything that goes on in a reception class. Granted his speech has come along absolutely beautifully and you would never even know now that he didn't talk straight away. In fact a recent speech assessment has told me that Leo's speech essentially masks his wider delay. They say that his speech has advanced ahead of his understanding, and although the report also highlighted areas that I do agree with, this is one point that I definitely disagree with.

Leo is very particular about what interests him, if it's something that pleases him and he wants to do, he will listen to instruction and follow through with the task. If however it is something that he does not want to do, you can bet your bottom dollar that he will halfheartedly take part. You could even say that he plays on the fact that he knows the teachers are taking his learning slow and steady with him, like he almost knows what they are thinking. 

What is global delay?

The term 'developmental delay' or 'global development delay' is used when a child takes longer to reach certain developmental milestones than other children their age.  This might include learning to walk or in Leo's case talk,. It could even be developing motor skills, learning new things and interacting with others socially and emotionally.

In some cases, the delay will be short-term and can be overcome with additional support or therapy. However, in other cases the delay may be more significant and the child will need ongoing support – this indicates they may also have a learning disability.  

School have informed me that Leo is globally delayed, but this is not an assessment that has come from a pediatrician. This is just something that has been used to describe the situation as it is right at this moment in time. Leo is learning you see and we have all been doing so much with him to try and bring him along that little bit more. I recently purchased the 'Teach your Monster to Read' App and Leo has been absolutely loving it, he's been coming along marvelously with all of his sounds, but is still struggling when it comes to putting words together. But I will take that as a step forward, because this is the first time he has shown an interest in letters and sounds. All of a sudden it's like he actually wants to try.

The school are fantastic, Leo now gets a lot of 1 to 1 and this seems to help spur him a long a little more. The most recent news is that we have finally been referred to the Pediatrician and are awaiting our first appointment, and on the 28th of this month we have an educational psychologist coming in to visit with Leo in school. I can only take this as a positive. 

I am at the point now where I just want answers and support for Leo. I'm angry that this could have all been sorted over the last couple of years in preparation for when he started school. I'm angry that the health visitor let us down, not just once, but twice. 

It was she who raised the initial concerns at Leo's 2 and half year assessment, it was she who ignored my phone calls and didn't follow up with us as she had promised. It was she who a year later came out to the house and told me that there was absolutely nothing wrong with Leo and there was no way that she was going to refer him.

It was she who sent him off to school when she damn well should have referred him. 

It was she who let Leo slip through the net. 

I am not just angry at her though. I am angry at myself. I am angry that I let her wash this relief all over me, let myself believe those words that I had longed to hear, despite the nursery completely contradicting what the health visitor had said. After years of hearing all of the things that Leo wasn't achieving, I cannot even begin to tell you how amazing it felt hearing that Leo was exceeding for once.

Do you know what though? I would not change a hair on Leo's head. So he finds school hard. So he's not where the other children are right now. I have a beautiful, happy, well behaved little man who is kind, loving and all round amazing. 

Leo has made really good friends with a little boy in his class, and when I had to collect my nephew a few weeks ago, I arrived early so I could sneak a peek at Leo playing on the big open field. I have always worried that I would see Leo looking lost as all the other children ran around enjoying themselves, as that is what the feedback from nursery and school has always lead me to believe. What I saw was the complete opposite, Leo and 2 of his friends running around, playing, kicking the football. Having a great time. I sat there for around 5 minutes just watching. Then I couldn't resist calling him over, he was so excited to see me and his little friends bounded over with him.

For me the most important factors are that Leo is happy, he likes school, he has friends. That to me is all that really matters. We will get Leo where he needs to be, but the fact that he is smiling is worth so much more than anything else.