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.

Hello September

The summer has been an incredibly busy time for Leo and I, the reception year passed in the mere blink of an eye and before we knew it we were hurtling towards the 6 weeks holiday. You may have noticed a few tumble weeds around the blog over the last few months, and that is because we have literally been on fast forward since the school bell rang on the last day of the Summer term.

If I thought that the Summer break was going to be a relaxing time, then I hope I can be forgiven for at least hoping for a few quiet weeks... Or even days for that matter. You see over the Summer holiday we got a puppy, moved house, Leo learned to ride his bike without stabilizers and we even attended a wedding!

In that order...

When I write it down in short bursts like that, it doesn't sound like we did all that much, but the move alone has completely knocked me for six. Don't get me wrong I am absolutely in love with our new home, I feel so incredibly lucky, and I finally feel like I can give Leo the space and time that he needs in order to flourish to his full potential. What I didn't anticipate was just how much time and money I was going to have to throw at the move, of course I had put some savings behind us because a move is always costly, but I had no idea just how expensive carpeting an entire house would be!

We had to work around the carpet fitter, and slowly but surely started to bring our worldly belongings over to our new home. It was so surreal packing our entire lives into boxes and black plastic bags, but thankfully as I had begun getting everything we needed together months before the move actually happened, I could pretty much get the kitchen up and running as soon as we had the keys! It was the other rooms I had to wait a little longer on. 

We are now in the house and it's all starting to feel a lot more like home, I still have lot's of work to do to my room as I am currently without a wardrobe, but it's not the end of the world. Leo's room is starting to take shape and the rest of the house is pretty much there, all I need to do now is add those essential finishing touches.

I am beginning to put together a home decor series that will be hitting the blog in the coming weeks ahead, I am just waiting on sorting a few last minute bits and pieces. My bedroom is still in utter chaos and will be until I can find the pennies to put a wardrobe in there!

It has to be said though, moving house with a puppy has been...interesting. Having Lux is like living with a naughty toddler who will not listen to anything that you say and is constantly hunting out mischief that quite honestly just seems to come oh so naturally to him, we wouldn't change him for the world though. He has spent his time un-packing boxes, taking the television remotes out into the garden, chewing all of our shoes and being a general pain in the bum, but it's been lovely seeing him settle in so well with us, and Leo is absolutely besotted with his pup! (I will be sharing a full month pupdate in the next week or so!)

The summer brought with it a new milestone and Leo lost his very first tooth. It was a funny turn of events because I just did not see it coming. One morning while I was brushing little man's teeth, his entire tooth just moved with the brush, to say it caught me off guard would be the understatement of the year, and of course my shock in turn scared Leo, who proceeded to smack me over the head in a panic. I soothed him right away, we had already talked about how it would start happening soon, and that it was of course nothing to worry about. 

Leo did not touch that tooth and it hung on by a thread for weeks, until the morning of August 2nd while Leo was eating his cornflakes it came away and was swallowed into the depths of his tummy, gone forever. I have to admit I was slightly disappointed as I had been planning on keeping his first tooth, just like I had his very first curl. We decided to write a letter to the toothfairy and let her know the fate of Leo's first tooth, and thankfully she took pity on us and left Leo a £1 coin along with a letter under his pillow.

Loosing one tooth over the holiday didn't seem to suffice for Leo however, and a couple of day's before the return to school, we discovered he had a second wobbly tooth! This time Leo didn't leave it alone, he wobbled it day and night. He wobbled it through my brother's wedding, even allowing his little cousin to give it a wobble too... Of course he waited until the night before he went back to school to pull it out. He had been in bed and asleep for hours, but at just gone 11pm Leo burst into the living room to announce that his tooth had fallen out and we needed to get it under his pillow as soon as possible!

The poor old toothfairy was caught so far off her guard that she had no spare change whats so ever. Instead... She placed a £5.00 note under his pillow. Here's hoping Leo doesn't expect this for each and every tooth!

If loosing teeth wasn't a sure enough sign that my little boy is growing ever bigger, then him suddenly hopping on a neighbors bike (without stabilizers) certainly told me! I was so worried and told him over and over to be careful. Of course he quickly brushed my concern off and pretty much told me to relax. In fact his exact words were these 'Mummy I bet I can ride without stabilizers! Watch!' and so I did... and he was right. Without any practice or guidance from myself or his Daddy, Leo took off on a bike without any assistance at all.

I couldn't help chuckling to myself as all the global delay comments trickled to the forefront of my mind during this proud moment, because when that boy sets his mind to something, you best believe he is going to smash it!

It is for this very reason I have made a pact with Leo in regards to his learning, and that pact is this. If Leo co-operates with me and tries his hardest, I will buy him the biggest Nerf Gun I can find when he learns to read. Now this is an especially big deal because I have always told him that he will never own a Nerf Gun, but it's something that he has desperately wanted for such a long time, and the greatest incentive I could ever offer him. Leo has been back at school for one whole week now, and he has read to me each and every afternoon without any objections and he has been really giving it his all.

So here we are at the start of Autumn, and here I am back behind the laptop catching up on all of my emails and the posts that I can't wait to write, and it's time to start smashing all of Leo's goals and give the teachers something to talk about!