EHCP

Applying for Harry's EHCP was, without a doubt, one of the most tedious and heartbreaking things we have ever done, the only thing worse was the dreaded DLA forms. I don't know who designs these things. Who decided that on top of the extra work special needs parents have they will throw these god awful form on top. That person is definitely on my list.

So what is an EHCP?
EHCP stands for - Educational Health and Care Plan. It is a 'plan' put together outlining a child's additional needs while in education and how best to support them. Getting an EHCP for your child means that they can go to and school of your choosing and said school usually gets additional funding specifically for your child and their needs. Often that funding is used for additional resources or a 1:1, again dependent on what it is your child requires.

Who can get an EHCP?
Any young person up to the age of 25 can apply for an EHCP (if under 16 parents can apply) who has additional or SEN needs.

How do you apply for an EHCP for your child?

We were extremely lucky that Harry's nursery did most of the work for his EHCP, however if you think that your child would need one, please speak to their childcare setting or school. If your child is not at school or in any sort of childcare you can speak to your doctor, health visitor or even your local council about applying for your child.

You will need to fill out forms about their likes, dislikes, what they can do, what they can't. how they communicate and where they are with their milestones. I found this difficult as putting how far behind Harry is onto one big form got to me, but it needs to be done.

Be as honest as possible with this form. The council will then convene a 'pannel' who will decide if your child meets the requirements for an EHCP. I'm not sure what the requirements are, I don't think we were ever told but knew that with Harry's diagnosis we were likely to get one.

After the panel, they will invite you to a meeting, possibly with anyone else involved in your child's care, like doctors, nursery or school staff. This meeting will determine the actual 'plan' and will be reviewed every so often to ensure your child is getting everything they need. Then you will have your EHCP!

It is not a quick process. Our application went in November 2019 and February 2020 we got a call confirming the panel had agreed Harry meets the requirements. His EHCP should be in place by Septemeber 2020 when he goes to school and I'm hoping we will have it by April when we find out what school he is going to as the school we want is not in our catchment area so we may have to go through an appeal, which im not looking forward to even if he does have his EHCP in place by then!

The real struggle of having a child who cannot speak

Harry, at the point of writing this, can say around 20 words and most of them are only recognizable for people who have spent lots of time with him like us and his grandparents and even then we can't always work out what he is trying to say.

The truth is, its hard. Harry still at almost four exclusively communicates using Makaton. With him going to school in September, I worry. I worry that he will not be able to communicate with his classmates and struggle to make friends. 

He's picking up new sounds all the time and of course, its something we are always so proud of when he says a new word but its hard to have to speak for him, to explain to people what he is saying. And sometimes I think that we shouldn't be speaking to him but he wouldn't be able to communicate with other people if we didn't.

Christmas and birthdays, we get what feels like hundreds of messages asking 'What does Harry want?' and the honest answer, we don't know because he cannot tell us. Most children at 3 years old can ask for something specific or answer the question, 'what would you like for Christmas/your birthday?' with Harry, it's as much of a guessing game now as it was for his first Christmas. I think we do well though!

Harry also can't tell us when hes feeling unwell, or something is hurting so I find myself questioning when he is misbehaving or acting slightly out of character, Is it a stage? or is something wrong? Or am I just imagining it and he's being a typical three-year-old?

I guess the point of this post is to highlight that as much as I may try to pretend and act like nothing phases me, sometimes this journey, with this amazing little boy, simply is, hard.

Telling our family Harry has downs.

Sam and I have always had so much support when it comes to raising Harry. And we will always be beyond grateful for every single person.

Telling our families about Harry's diagnosis was hard. It wasn't something anyone had ever expected, with us being so young, and let's be honest, you don't ever think it will happen to you. 

I remember after the doctor had spoken to us about running the tests. I couldn't think. The first thing I did after getting back to my hospital room was calling my mum. 

My mum lived just over 100 miles away at the time. When we told her I was pregnant she had planned to come down for the last two weeks of my pregnancy, but I had put her off. You can't know for definite when you will go into labour and I didn't want her to get excited, book time off work and come down, for me to go 2 weeks over. So when we told her Harry was in NICU she again offered to come down and again I put her off, what could she do? She wasn't able to visit Harry for the first week or so and she would have just been sitting at mine for the whole time she was down, with me and Sam at the hospital. But at that moment, making that phone call, I just wanted her here. She didn't get to meet Harry until just after he turned a month old with having to book the time off work and everything and while she wasn't here I felt kind of alone. She had missed the majority of my pregnancy and didn't get to meet my little boy for a month.

She lived that far away until recently. The 1st of September she officially moved back here and its been fantastic. I know she feels like she has missed out on so much of Harry she's trying to make up for it. Sam and I are super lucky that my mum now has Harry one day a week and my sister has him another now so we can save so much money on our nursery bill. 

My mum was so amazing when we told her about the doctors thinking Harry had down's. Her first words were, 'So? Who cares' She has never seen why it would be a problem. And she has always been one of Harry's biggest cheerleaders.

Telling my dad was harder. We waited until we got our confirmed diagnosis before we worried him because we knew he would worry. 

I have to say, my dad really shocked me. We felt it was best to gather at my grandparents (this has always been a meeting place for my family. If we need a gathering place its always at Nan's!) with my grandparents and dad there. I remember sitting at my nan's dining table, with everyone surrounding Sam and I. I think they had all expected something about Harry being in NICU. I think my dad was convinced he was going to be there for months. And we just came out with it. 'Harry has Down's syndrome.' My dad and my nan cried. I think my mum did too, to be honest, but I wasn't there to see that. We explained that right then we were just focusing on getting him well enough to come home, and we didn't know what Down's syndrome meant for us.

I dread to think what happened when we left.

But my dad did something I never expected of him. My dad has always been a typical Cockney. An East Londoner through and through, but he was confused and concerned. Normally this would just frustrate him, but he got in contact with the local SEN school's headteacher (i think he was a friend of a friend) and he had a meeting, he learnt everything he could about downs. And then when we also got the Klinefelters syndrome diagnosis he did the same. He learnt everything he could. I don't think my dad will ever know how much I love him for that. My little boy is my dad's world, and he wouldn't have it any other way. Growing up I never imagined getting my dad to babysit my children, but now, seeing him with Harry, I couldn't imagine not asking him to look after Harry when I need a break. My dad has given up nights out, football games and events he has brought tickets for, to look after my little boy when I ask. He's always happy to give us lifts and is one of the two other people, that aren't me or Sam allowed to pick Harry up from the nursery. I think my dad is one our biggest supporters, and I know he would do absolutely anything for Harry.

I was never really involved with how Sam told his parents. I was in a state, with having had no sleep while going through my six days of pre-labour and everything going on with Harry. Sam pretty much took over telling everyone to be honest. He has always been my rock and I don't think I have ever needed him more then I did in those weeks Harry was in NICU.

Sam told his parents when they came to the hospital to visit Harry. He sat them down in the atrium while I was in with Harry, wishing I could touch him. We were never concerned about how Sam's parents would react. We knew they would look past all of that and see Harry for who he was.

We are incredibly lucky to have the support we do from Sam's parents. They have done more for us then we care to admit, and I don't think I will ever be able to thank them enough for it all, but most of all I will never be able to thank them enough for how they love Harry. I don't think I've ever told them how grateful I am to have them as my in-laws. 

Sam's mum has been one of our biggest help. Not only does she do EVERYTHING for Harry when we visit, but she was also there for us during my pregnancy whenever we needed some help. She became my support while my mum wasn't able to be here. I'll never forget the first day I was having contractions. Sam called his mum, just to update and they travelled back from their caravan that very night so his she could sit with us at the hospital if we needed anything.

Sam's mum is also a great help thanks to her experience with children with special needs. Sam's mum used to work for the Visual Impairment service and has lots of experience with children with special needs. Although she hasn't done it for a fair few years she is still our first port of call if we are concerned with anything to do with Harry. She may get sick of the many questions but she never lets on. She is always there if we need her. 

Sam's dad is one of Harry's favourite people and we know that he loves Harry just as much as Harry loves him. He lights up whenever he sees our little boy and it's amazing to see them together. I know he will teach Harry to be just as cheeky as Sam is and to tell some brilliantly terrible jokes but I honestly wouldn't have it any other way!

I will always be thankful for our family and how they are with our beautiful little boy. I feel good knowing he has all of these people to support him through everything life is going to throw at him. I know his life may be hard at times, but I also know with the family he's got he will get through anything.

Questions we get asked about having a child with special needs

Happy October!!

Did you know October is Down Syndrome awareness month?

For my first post in October, I wanted to answer some questions Sam and I get asked a lot since we had Harry and got his diagnosis.

1. The first question we always get asked is, did you know when you were pregnant?

No, we made the choice while I was pregnant that we didn't want to know. It was a really personal choice for us but we researched the process of the testing and decided that if the results of the first test came back high risk we weren't comfortable with getting other tests, with the risk that comes with them, and so refused all testing. If the NIPT had been widely available when I was pregnant we would have chosen that because it comes with 0% chance of miscarriage.

2. How is having a child with Downs different to having a 'normal' child?

The real answer to this question is, honestly, how would we know? We only have Harry but we have always strived to treat him the same as we would have treated him if he had not had downs syndrome. Obviously, this hasn't always been possible, but we want Harry to grow up feeling like an equal to any brothers, sisters or cousins that may come along in the future.

3. Oh, aren't kids with Down Syndrome always happy and cuddly?

Have you seen Harry when we turn Paw Patrol off? Or tell him no? He has just as many tantrums as any other 2 year old! Sometimes I think he's worse. Don't get me wrong he will smile at every person in the street who gives him a little attention and he is such a flirt! But he certainly can strop and tantrum like the best of them!


4. So does he talk yet?

Yes and no, Harry can say words but at the moment he prefers to use his signs. He communicates perfectly with everyone who knows Makaton and we can carry a simple conversation with him, but he uses his words when needed. And since he moved to the toddler room at nursery he babbles constantly! Can't shut him up lately!

5. And finally, the most common question Sam and I get asked. Will you have more kids?

The answer to that question of course is Why wouldn't we? Our plan has always been to have two children, and of course Harry has different needs to other children and we have a slightly higher chance of having another child with special needs but our family doesn't quite feel complete without a little brother or sister for our monkey. I know, seeing him with his little cousin and any other babies he sees, Harry is going to be the very best big brother ever!

So that completes the first of my posts for World Down Syndrome Month 2018!! Happy October!!

A Harry update - August 2018

So, I'm not exactly sure if I've done one of these before but I wanted to write a quick post to let you know all about Harry's updates!!

Milestones Harry has hit recently;
By recently I'm talking the last six months or so. Ask any parent, seeing their child hit any milestone is a huge deal, but for me, I feel that Harry has to work slightly harder to hit his milestones and so I feel all the prouder when he does!
Going back six months Harry was barely able to weight bear on his legs and couldn't crawl. He was barely able to sit unaided and couldn't move from laying to a sitting position. He now can sit unaided confidently, pull himself into a sitting position, bum shuffle, crawl (in his own special way) and is just starting to walk! We are beyond proud of him.

Harry has also picked up Makaton like a star! He can communicate exactly what he wants with his favourite signs being 'cake', 'sandwich' and 'Tumble' (Thanks Mr Tumble). He also says words such as 'mama' 'dada' 'harry' 'cake' 'nanny' 'grandad' and his favourite word 'HIYA' but he seems lots more comfortable signing at the minute.

Healthwise Harry is doing fab! He was diagnosed with sleep apnea back in May which we were referred to Addenbrookes hospital for. His ENT consultant (ear, nose and throat) said that although Harry's adenoids are larger than normal he didn't feel that was what was causing the breathing problems and diagnosed Harry with Rhinitis and prescribed a steroid nasal spray which definitely seems to be helping! He still has the odd episode but nothing compared to what it was like before the spray! He also doesn't constantly have a running nose which is AMAZING!

When Harry was born he was diagnosed with a PDA or Patent Ductus Arterisus (hole in his heart) which had been getting smaller. Finally, on our most recent cardio appointment, we found out this has completely closed up!

However, while checking for the PDA Harry's heart doctor noticed something new. An AVSD. This is a hole in the heart that is common in children with Downs but wanting to be sure of what he was seeing and what the best course of action was with it, the doctor referred us to Great Ormand Street Children's Hospital (GOSH) for a second opinion.

GOSH are the best there is when it comes to treating children, and we were happy to be in such great hands, but as a parent, there is nothing scarier than being told your child will be seeing a consultant at GOSH. You only really get referred there when its something serious, so knowing that there was some real concern about this AVSD was honestly a horrible time. Waiting for that appointment has been the longest two months of our life.

Harry has now had his appointment with the amazing consultant from GOSH who looked in depth at Harry's heart and told us that right now, its not causing him issues and is so small he feels he would be doing more damage than good going in to repair it, which honestly was the best thing I've heard all year! We know the likelihood is that Harry will eventually need this hole and leak repair, but doing it when he is bigger means that they can do keyhole surgery rather than open-heart meaning the risk is a lot less! So we are back at six monthly reviews for his heart and now he will be seen by GOSH rather than his old heart doctor but we are thankful for the little successes!

One of the biggest thing happening for Harry right now is his transition into the toddler room at the nursery. Normally children only stay in the baby room until they are two, however, between us and the nursery staff, we decided that when he turned two, Harry just wasn't ready for the transition and so the nursery said that they would keep Harry in baby room for a while longer. So about a month ago, the girls asked us to come in for a meeting where they told us they thought Harry was ready to give moving up a try! He's had a few sessions so far and the plan is to move him up permanently in September!

All in all, Harry is doing pretty brilliantly!! I will try and post one of these updates every 6 months or so, so keep your eyes out for them and all of the other posts in between!!

Harry - More than a diagnosis

Harry is almost two and a half. He is almost 3ft tall and weights 11kg. His favourite food is bread, or maybe cake (its the sign he knows best for sure!)  and he LOVES to watch Mr Tumble and Paw Patrol.

But why am I telling you all of this?

Because Harry is a person in his own right. He is a cheeky monkey with an attitude that puts me to shame! But most importantly, Harry is Harry, he is more than a diagnosis.

When we first meet people we introduce Harry and I can always feel the questions, they know something is different about him but they don't want to ask, in case they are wrong or in case I go off on one I guess, but I always want them to see Harry as Harry so we don't mention his diagnosis until someone asks, which honestly doesn't always happen. It usually comes about when they mention how small he is (he is comfortably in 18-24 month clothes) or ask why he isn't walking yet (we're getting there!). When we do say that Harry has down syndrome we always get the same responses;

'Oh, I'm so sorry'

'They are the most loving, happy kids aren't they'

'So what's it like?'

and I have to be honest, every single one of these responses bothers me. I understand that people haven't got a clue what to say when they hear that and I try not to let it get to me. There are things that i always want to say;

'Don't be sorry! There's absolutely NOTHING wrong with him!!'

'No, he can be a stubborn little monkey and has a stinking attitude sometimes, just like all the other 2-year-olds out there!!'

'Honestly, it's like having a 2-year-old. We don't know any different!'

I think its really important to remember that a diagnosis doesn't mean that a child, or a person of any age, any less of a person. and whatever their diagnosis, it doesn't define who they are!

5 wishes for Harry's Future

Sam and I are often asked what school we will be hoping to send Harry to, special needs or mainstream? It seems important for people to know and, even though they have no idea what they are talking about, to question our answer.

Our answer has always been the same. Whatever works for Harry. He currently attends a mainstream nursery and is blooming there, so ideally we would love for a mainstream school to work for him. We swore when we found out his diagnosis that we would never treat him any differently then we would have if he didn't have Down's syndrome or Klinefelter's syndrome, and we have worked hard to keep to that as much as possible. So it always confuses me that people question why we would attempt mainstream schooling. If it doesn't work, we step back and reconsider, as we always have with Harry.

This got me thinking, What things are really important for us to aim for with Harry. What dreams do we have for his future, this is the list we came up with;

1. Do well in school. For this one we aren't talking about grades necessarily, I mean that we want him to be involved in things, like teams or after school clubs, making friends and just generally enjoy school. For me, this is what doing well in school means.

2. Achieve. We are very much in the frame of mind that Harry is a person, and as such we try not to dictate things for him, such as things like which football team he will support (I have refused point blank to let anyone buy him anything to do with football teams) or what we want him to be interested in. if he wants to be a dancer, go for it, if he wants to be a poet good on him. We really have no preference, but the most important things for us is that he works hard and gives it everything he's got to achieve his dreams.

3. To be accepted. This is a great fear for us. It took a long time for us to accept that, as much as we treat him as normally as possible there are people we know who don't and who he will come in contact with in the future who won't. To them he is different. I work hard every single day to try and raise awareness in the hope that Harry will never meet people who will treat him badly because of his diagnosis.

4. He lives in a world that he feels safe in. As an adult and a parent, I am shocked at all the things in the world that make me scared or feel unsafe. I wish I could protect Harry from these things forever, but most of all I want him to feel safe walking down the street or driving a car and the things that scare me aren't there when he's out in the world on his own.

5. That he can look after himself. This one is my most important and actually didn't come around because of his diagnosis. Sam and I aren't going to be around forever, and I want to leave Harry, as well as any other children we may have, with all the skills he will need to look after himself when we are gone. I want him to know the value of money and that nothing is handed to you on a plate. That bills need paying and debt is a dangerous thing. I want him to be able to cook and use the washing machine and all the other things that come with 'Adulting'

If I knew what i know now, back then

Getting a positive diagnosis for Downs syndrome is heartbreaking. There really is just no other way to put it. I wish i could make that moment seem better, but in that moment, looking a my poor sick baby, i felt like the world was collapsing around me.

As I've said before, I was so young when I had Harry. I didn't think i was then but looking back I wasn't prepared for anything of this magnitude. I convinced myself that i was young and healthy and had been doing everything right, so there was no way that anything could be wrong with my baby, I wasn't high risk.

I was wrong obviously. And 19 months in (Where did that time go?!) I know now that it really isn't the end of the world. If I could go back to that moment, there are a few things I would love to tell that scared. tired girl...

1. He will still love you more then you can imagine - Harry having disabilities doesn't make him any less of a human. He's still a fun loving cheeky monkey who loves me and Sam more then i ever thought possible.

2. You wont love him any less - One of the biggest things I was worried about was not being able to love him. What a stupid idea that was. I didn't know this amount of love was possible.

3. He can still do everything you dreamed for him - When i was pregnant I had huge dreams for Harry and hearing his diagnosis, I thought he would never do any of them. But he can do anything he sets his mind to. It might take him a little longer to get there, but he sure will!

4. There is a whole world out there you will discover and fall in love with - Harry has opened so many doors for me. His diagnosis has led me to meet some amazing people, and gave me something to write about, after not writing for years because i was uninspired. He is my inspiration. Every single day.

5. You will all be just fine.- And we are. We are just a family getting by every single day

I'm not saying that everything is perfect. Nothing is every perfect and there are struggles that parents with kids with no special needs will never understand, and i worry every single day that Harry will be singled out. But we will get through it, because its not the end of the world.

The Harmony test

What is the Harmony test
The Harmony test - also known as Non-Invasive Prenatal testing or NIPT - is a blood test which can test for various genetic abnormalities including Downs Syndrome, Edwards Syndrome and Patau Syndrome. It is being rolled out slowly in the UK to replace the CVS and Amnio testing usually done after your 12-week scan.
The Harmony test can be taken as early as 10 weeks into your pregnancy and has a false positive rate of just 0.1%. With the Harmony test, you can expect to receive your results within 10 working days.
One of the great things about NIPT it completely eliminates the risk of miscarriage for fetal testing, which with Amniocentesis is 1% and CVS is 2%.
What is Amniocentesis?
Amniocentesis is one of the current procedures used to diagnose genetic abnormalities in an unborn baby. The procedure involves taking a sample from the amniotic sack that surrounds and protects the fetus. It can be dangerous though as a slight miscalculation can cause irreparable damage to the sack resulting in miscarriage.
What is CVS?
Chrionic Villius Sampling - or CVS - is another procedure offered by the NHS currently to diagnose genetic conditions. This procedure involves taking a sample from the placenta and of course carries the risk of damaging the placenta meaning a miscarriage occurs.
What are the perks of having the Harmony test?
Besides carrying no risk of miscarriage there are several other perks of having the Harmony test during your pregnancy.

1. Is done early as to make an informed decision - There is no judgement here on Raising Harry. We understand that having a child with special needs is a personal choice and feel that by having the test early you can do all the research you feel you need to to make an informed decision and that is exactly why we started this website. It's nothing to be ashamed of.
2. Can test for other things - With the Harmony test, you can also get what is called X Y testing which means that you can find out the gender of your baby but it also tests for things such as XXY.
3. Low false positive rate - With being over 99% accurate you can trust the information you are given.

How has the development of the Harmony test affected children with special needs?
The development of the harmony test in different countries has affected the rate of children with special needs born.
Termination rates for downs syndrome
U.K - 90%
France - 77%
U.S  - 67%
Denmark - 98%
Iceland - 100%

But why are the termination rates so high? I think, honestly, it's fear and misinformation. And that is why I wanted to start this website, to show the positives of having a child with special needs.


I am all for the Harmony test, from my personal point of view it is a good thing if having a child with special needs is something you feel strongly about, and the main positive for me is the fact that there is no risk of miscarriage makes this the best thing, and while it is not available on the NHS at the moment if you can afford it (runs at roughly £400 for the testing and  private scan) I would highly recommend getting it.

What is Klinefelters Syndrome?

Klinefelters syndrome is a genetic syndrome caused by a male having two X chromosomes, also commonly called XXY or Double X Syndrome. Usually a female has two X chromosomes (XX) and a male has one X and one Y (XY). Having an extra X chromosome does not mean that someone who has Klinefelters is not male because they still have that  chromosome.

Symptoms of Klinefelters include;  

1. Learning to crawl, sit up, walk and talk later then others - This like downs syndrome is caused by low muscle tone and doesn’t mean that boys who have Klinefelters will never be able to but just may be a little slower.
2. Quiet and passive personality – Not necessarily true and anyone who has met Harry will completely agree with that!!! However boys with Klinefelters have been known to be quieter and more passive then other boys their age, although this can just be shyness!
3. Learning difficulties – Issues with reading, writing and spelling. Also boys with Klinefelters are also commonly diagnosed with dyslexia
4.  Height – How jealous I am of this!! Me with my tiny 5”1 height! Likelihood is though Harry will be very tall!
5.  Reduced facial and body hair – May be less but may also just develop later.
6. Wide hips and in severe cases breasts develop.
7.  Low sex drive
8.  Infertility
9. Small penis and testicles

While some males who have Klinefelters will experience all of these symptoms some will have few or none. There is no guarantee and some males go undiagnosed until issues with fertility or other issues.

Health issues are also common with Klinefelters as the risk is slightly higher especially for certain issues such as;

1. Type 2 diabetes
2.  Weak and fragile bones
3. Cardiovascular disease
4.  Blood clots
5.  Under active thyroid
6.  Anxiety
7. Depression
8. Male breast cancer

Again none of these are guaranteed.

Klinefelters is incurable, however it is manageable with things such as testosterone therapy (usually given vial injections) to help the body with its lack of testosterone physio therapy to help with muscle tone development and breast reduction.

Not much more is known about Klinefelters, and Harry having both Klinefelters and Downs is incredibly rare (we worked it out as chances of having a child with both at my age being about 1 in 4.5 million) and so not much is known how it will effect Harry is the future and so we are just taking  everything as it comes.