Lockdown. Who thought we would end up here? Covid-19 (or coronavirus, whichever you want to call it!) has sent the whole world into a panic and here we are in the UK, under lockdown. There are more and more cases every day and more and more deaths. I worry every day about Harry getting it as he could be considered high risk due to his heart issues and because of this we are staying home and have been since before the lockdown.
But staying home day after day is not easy. When there were the first talks of lockdown I was excited at the thought of spending more time with Harry and desperately wanted this, however, the moment it happened I worried about keeping Harry occupied and keeping my mental health in check especially as I'm not working from home I'm just home. After the first week indoors I wanted to talk about how we have been coping.
1. Getting dressed every day. This is a big one for me. I spent the first couple of days in my pj's and vegging out in front of the TV. We did no activities and honestly, it was not productive. I went to bed every night telling myself 'I'll get up and do this or that tomorrow' It didn't happen and I stayed in my PJ's on the sofa all day. Then something hit me and I had a shower, brushed my hair and got dressed, then suddenly I was like a new woman. I've now been dressed every day since and getting lots more done.
2. Having a routine. Again, I obviously didn't do this one for the first couple of days and felt completely lost if I'm honest, but then I realised, we don't know when - or even if - Harry will be going back to the nursery and he thrives having a routine, so we've put some in place. It's not a strict 'we must do this at this time' routine but it helps both Harry and I feel more at ease.
3. Garden time - The weather is finally nice enough for us to use the garden and we have been making the most of it. Harry loves to be outside and to be honest, it wasn't always my favourite thing to do but I'm really appreciating the fresh air out there.
4. Learning-based activities. I felt so guilty that Harry spent three days sat in front of the TV. especially with him starting school in Septemeber. So I jumped online and looked for some age-appropriate learning-based activities for him. It's not something that you will have to do - unless your child is already at school and the school have provided work for them to do, but this makes me feel so much better about having him home. I am also going to be digging out the 100 words activity that nursery does with him and putting that to good use every day too!
How are you staying sane? What have you been up too? I'd love some more ideas of things to do with Harry too!
My favourite things to do with Harry, when it's just us!
********PLEASE NOTE THIS POST WAS WRITTEN PRE 'LOCKDOWN'***********
3 weekends out of every 5, it's just me and Harry, while Sam is working. It took a long time for this to be something I'm comfortable with, and 'solo-parenting' is still so hard sometimes, but Harry and I have found some things to do together that we just love.
Snuggles and a film are usually my go-to when it's early in the morning (5:30 am on a Sunday, really Harry?!) So we pull out the spare quit and pillows, get cosy on the sofa and pop on one of Harry's favourites (usually one of the Incredibles or Despicable Me films). Some days Harry will only give me 20 minutes, others he can make it to pretty much the end of the film.
I love to get cosy with him on the sofa, its one of the only times he ever lets me get some proper snuggles and it quite content. It usually gives me time to wake up properly too. I'm going to be completely honest as well and say that some mornings, depending on what shift Sam is on, we don't make it downstairs and Harry just climbs into our bed, which he definitely prefers!
Harry and I love to get out the crafts. especially when the weather isn't the best and I don't really want to take him out. Harry loves playdough so that definitely always comes out at some point, I'm definitely that mum though who only lets him play with one colour at the time. I can't cope with the mixing. We also love to paint and at the moment Harry's favourite thing to do it paint his hands and make prints. It's not the cleanest activity but he really loves it.
I love to bake and Harry loves to help. This is something I love to do with him but I'm also a perfectionist so struggle to actually let him help! I'd love to do more baking with him though and I know he would love to do more baking!
Nothing makes Harry happier then getting his coat and boots on and going for a walk, especially if he can splash in the puddles!
3 weekends out of every 5, it's just me and Harry, while Sam is working. It took a long time for this to be something I'm comfortable with, and 'solo-parenting' is still so hard sometimes, but Harry and I have found some things to do together that we just love.
Snuggles and a film are usually my go-to when it's early in the morning (5:30 am on a Sunday, really Harry?!) So we pull out the spare quit and pillows, get cosy on the sofa and pop on one of Harry's favourites (usually one of the Incredibles or Despicable Me films). Some days Harry will only give me 20 minutes, others he can make it to pretty much the end of the film.
I love to get cosy with him on the sofa, its one of the only times he ever lets me get some proper snuggles and it quite content. It usually gives me time to wake up properly too. I'm going to be completely honest as well and say that some mornings, depending on what shift Sam is on, we don't make it downstairs and Harry just climbs into our bed, which he definitely prefers!
Harry and I love to get out the crafts. especially when the weather isn't the best and I don't really want to take him out. Harry loves playdough so that definitely always comes out at some point, I'm definitely that mum though who only lets him play with one colour at the time. I can't cope with the mixing. We also love to paint and at the moment Harry's favourite thing to do it paint his hands and make prints. It's not the cleanest activity but he really loves it.
Colour sorting game
Today Sam set up a great game for Harry. It was completely free using things we had laying around the house!
He used - 4 different containers - Old boxes, a roasting tin and our carrier bag storage! Paper with 4 different colours on them. We chose red yellow blue and green and just coloured 4 pieces of the paper. and things to sort. This was easy for us. We just used Harry's ball pit balls. We found 8 of each colour was the perfect amount.
Sam mixed up all the balls, threw them on the floor and let harry go! Harry picked up on the game really quickly. Red balls in the box with the red paper, blue with blue, green with green and yellow with yellow. This game really helped Harry to understand the different colours and even helped with his speech, using the words 'red' 'yellow' 'blue' 'green' 'here' 'there' 'that'.
While this was a quick game we swapped the positions of the boxes and tested Harry with giving him the balls rather than letting him pick. We even progressed to giving him two balls of different colours and letting him work out which box they needed to go into!
Harry had great fun and wanted to play again and again. It was a great way to keep him learning without him realising. We will definitely be playing this again, maybe introducing different objects and a wider range of colours.
He used - 4 different containers - Old boxes, a roasting tin and our carrier bag storage! Paper with 4 different colours on them. We chose red yellow blue and green and just coloured 4 pieces of the paper. and things to sort. This was easy for us. We just used Harry's ball pit balls. We found 8 of each colour was the perfect amount.Sam mixed up all the balls, threw them on the floor and let harry go! Harry picked up on the game really quickly. Red balls in the box with the red paper, blue with blue, green with green and yellow with yellow. This game really helped Harry to understand the different colours and even helped with his speech, using the words 'red' 'yellow' 'blue' 'green' 'here' 'there' 'that'.
While this was a quick game we swapped the positions of the boxes and tested Harry with giving him the balls rather than letting him pick. We even progressed to giving him two balls of different colours and letting him work out which box they needed to go into!
Harry had great fun and wanted to play again and again. It was a great way to keep him learning without him realising. We will definitely be playing this again, maybe introducing different objects and a wider range of colours.
Dear Harry...
My dearest darling boy,
Today your surgery got postponed again. Your dad and I didn't take it very well honestly. We have been going through all of the emotions in these last few months and honestly, it doesn't feel much better than it did when we first heard that you were going to be having surgery.
Honestly, I'm scared. This feels big and important, which of course it is. When we finally get a new date we will be travelling to London on the train, which I know you will love, get some bloods taken and then your surgery is scheduled for the next day. Your dad and I will stay with you when they put you under and then will be sent off to get some food and get out of the hospital that will, hopefully only for a week, be our home.
You will be in surgery for around six hours. When you get out, you will not be awake. the doctors assure me you will not be in pain for those first few days but that doesnt stop me worrying about how you will be feeling. I know you will be sedated but will you be feeling the pain? Or will you even know that mummy and daddy are there, watching over you.
Before you, my darling boy, I did not think I was a strong person. I never expected to be able to do something like this. I'm terrified for you, but I also know this is something I am going to remember for the rest of my life and I think that is the scariest thing
When we first heard about your surgery, I wanted to hold you tight and never let go. I wanted to say no. All of a sudden you seemed so tiny and I didn't know how I was going to handle it.
We had your Pre-Op appointment in February and you flew through it. The staff at Great Ormand Street hospital were all so amazing but I think it was seeing the ward that really kind of put me at ease. I walked into the CICU ward and heard the sounds and smelt the smell and realised that, although this is going to be really hard, we've done ICU before, Everything on that ward reminded me of when you were in NICU, which seriously helped me. It still feels like the most horrible thing for you to be going through, for us to be going through but I do feel like we have this.
I'm still scared baby boy, but together, you, your dad and I will get through this.
I love you Bug.
Mummy xxx
Today your surgery got postponed again. Your dad and I didn't take it very well honestly. We have been going through all of the emotions in these last few months and honestly, it doesn't feel much better than it did when we first heard that you were going to be having surgery.Honestly, I'm scared. This feels big and important, which of course it is. When we finally get a new date we will be travelling to London on the train, which I know you will love, get some bloods taken and then your surgery is scheduled for the next day. Your dad and I will stay with you when they put you under and then will be sent off to get some food and get out of the hospital that will, hopefully only for a week, be our home.
You will be in surgery for around six hours. When you get out, you will not be awake. the doctors assure me you will not be in pain for those first few days but that doesnt stop me worrying about how you will be feeling. I know you will be sedated but will you be feeling the pain? Or will you even know that mummy and daddy are there, watching over you.
Before you, my darling boy, I did not think I was a strong person. I never expected to be able to do something like this. I'm terrified for you, but I also know this is something I am going to remember for the rest of my life and I think that is the scariest thingWhen we first heard about your surgery, I wanted to hold you tight and never let go. I wanted to say no. All of a sudden you seemed so tiny and I didn't know how I was going to handle it.
We had your Pre-Op appointment in February and you flew through it. The staff at Great Ormand Street hospital were all so amazing but I think it was seeing the ward that really kind of put me at ease. I walked into the CICU ward and heard the sounds and smelt the smell and realised that, although this is going to be really hard, we've done ICU before, Everything on that ward reminded me of when you were in NICU, which seriously helped me. It still feels like the most horrible thing for you to be going through, for us to be going through but I do feel like we have this.
I'm still scared baby boy, but together, you, your dad and I will get through this.
I love you Bug.
Mummy xxx
What I've been watching
With all of the Covid-19 stuff going on at the moment we haven't left the house much lately. I know children are at lowest risk for the virus but with Harry's heart issues I still worry, so other than going to work we aren't really doing much.
Scrolling through my social media I can see lots of posts asking for recommendations on what to watch and realised I have been watching a lot of, let's face it Netflix really! So I thought I would do a post about what I've been watching lately.
Starting with my absolute obsession lately, The Originals. This The Vampire Diaries spin-off is, amazing. If you liked The Vampire diaries I highly recommend checking it out. I adored Klaus in Vamp diaries and him not being the villain but still totally evil is something wonderful. They have portrayed the vulnerabilities of the otherwise powerful characters so wonderfully that I've become invested in the lives of fictional beings. Sad I know but I love it. You can catch all 5 seasons of The Originals on Netflix - Just no spoilers! I'm halfway through season 2.
Sam and I usually have something on the go, and when we can't decide we go to some old classics. Lately, we have been re-watching Skins. Watching this now honestly is making me feel really old! I remember watching it when I was 16/17 and thinking about how awesome their lives must have been to be able to do all those things with little consequences. Now I find myself wanting to scream at them to get to bloody college and stop wasting their lives. I can't be the only one?
Bad parent alert! We've been watching The Simpsons a lot lately with Harry. There comes a point in every parents day I'm sure when Hey Duggee and Mr Tumble just get too much and so we compromise and put on The Simpsons. Harry loves it, honestly, I'm not even sure he gets it, but its the only way Sam and I can stay sane sometimes.
What have you been watching lately? I'd love to know!
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!
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?
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!
Down Syndrome. My journey with Harry's diagnosis
Down Syndrome. I'll never forget the way I felt, the first time I heard those words in relation to my beautiful son. He was less than 24 hours old and already we feared we would lose him. The doctors sat us down and said 'We think your baby has down syndrome.'
My world stopped.
Growing up, I had always said that I didn't think I would cope with a child with special needs. I had seen other family members dealing with it. It wasn't easy I knew that, but what I felt was worse, was the way the world looked at children who were different. Like they were aliens. I didn't think I would ever be able to cope with that.
When I was pregnant I thought about what kind of mother I wanted to be. I wanted to be like those mums you see on Instagram and YouTube who totally have their shit together 24/7. I was going to have the perfect balance of home life and building my career and take perfect photos and wear perfect clothes and throw perfect parties with themes and colour schemes. The whole shebang was what I pictured in my head.
Hearing that my child was different, felt like none of that was possible. I felt like my child would be singled out and stared out in the streets and never be included in everything. Who would come to the perfect parties I planned? and how would he cope with the perfect activities I saw us doing in my head?
I soon learnt that Harry wouldn't be the one stopping us from doing those things. I also learnt that the things I pictured in my head weren't real life. No one's life is that perfect. No one has their shit together 24/7. I certainly never will. Most of the time I'm a walking disaster.
That's not to say that this journey has been easy. I didn't tell anyone new I met about Harry's diagnosis for around six months. I had friends I had made with children around the same age who had no clue because I didn't want them to see him differently.
It's not that I was ashamed. It's that I didn't know how to deal with their reactions. It's stupid really because they were absolutely fine with it, they just wondered why I hadn't told them sooner!
Harry's health issues, especially as he is getting older, has probably been one of the hardest things I have ever had to deal with. There have been times when I think to myself 'i just can't do this anymore' but I've learnt that I am stronger than I ever knew.
Harry's diagnosis has made me re-evaluate lot of things about myself, not just about the kind of parent I want to be, but the kind of person. The things I think when I see children who are slow and even the words and phrases I use in everyday life.
Being Harry's mum has made me so much of a better person, as as much in the beginning as I was convinced his diagnosis was the end of the world. I know now, it was the beginning of a whole new one for me. A world of acceptance and fighting for that acceptance. It is a world of teaching others the way my little boy has taught me.
And honestly, I wouldn't have it any other way.
My world stopped.
Growing up, I had always said that I didn't think I would cope with a child with special needs. I had seen other family members dealing with it. It wasn't easy I knew that, but what I felt was worse, was the way the world looked at children who were different. Like they were aliens. I didn't think I would ever be able to cope with that.
When I was pregnant I thought about what kind of mother I wanted to be. I wanted to be like those mums you see on Instagram and YouTube who totally have their shit together 24/7. I was going to have the perfect balance of home life and building my career and take perfect photos and wear perfect clothes and throw perfect parties with themes and colour schemes. The whole shebang was what I pictured in my head.
Hearing that my child was different, felt like none of that was possible. I felt like my child would be singled out and stared out in the streets and never be included in everything. Who would come to the perfect parties I planned? and how would he cope with the perfect activities I saw us doing in my head?
I soon learnt that Harry wouldn't be the one stopping us from doing those things. I also learnt that the things I pictured in my head weren't real life. No one's life is that perfect. No one has their shit together 24/7. I certainly never will. Most of the time I'm a walking disaster.
That's not to say that this journey has been easy. I didn't tell anyone new I met about Harry's diagnosis for around six months. I had friends I had made with children around the same age who had no clue because I didn't want them to see him differently.
It's not that I was ashamed. It's that I didn't know how to deal with their reactions. It's stupid really because they were absolutely fine with it, they just wondered why I hadn't told them sooner!
Harry's health issues, especially as he is getting older, has probably been one of the hardest things I have ever had to deal with. There have been times when I think to myself 'i just can't do this anymore' but I've learnt that I am stronger than I ever knew.
Harry's diagnosis has made me re-evaluate lot of things about myself, not just about the kind of parent I want to be, but the kind of person. The things I think when I see children who are slow and even the words and phrases I use in everyday life.
Being Harry's mum has made me so much of a better person, as as much in the beginning as I was convinced his diagnosis was the end of the world. I know now, it was the beginning of a whole new one for me. A world of acceptance and fighting for that acceptance. It is a world of teaching others the way my little boy has taught me.
And honestly, I wouldn't have it any other way.
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.
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.
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?
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.
