Whether you like tattoos or not, you have to agree that it is a way to remember something forever. A tattoo is something that will never go away and each tattoo has its own meaning behind it. Continue reading “The special story behind 3 of my tattoos!”
World Down Syndrome day (21st March) is a huge day in our diary, whether you are celebrating at home with your odd socks or organising a big local event. Continue reading “What we are planning for World Down Syndrome Day 2018!”
So you have a sibling with Down Syndrome? Or maybe you’re due one? or maybe you’re just intrigued to know what it is like?
Now I’m not going to sugar coat this because I’m not Willy Wonka and this isn’t a pity party so get ready for the facts.
Already I have made this sound like this is going to be a serious post, trust me it’s not.
Seriously though, moments might be hard. I’ve seen Rory when he has been so ill and when she had his stoma bag but I forget that because I am there when he achieves. A happy moment over rides a bad one. The support groups are amazing and the friends you will make are even better. Your sibling may show you part of life you never thought you would see. I’ve been in the houses of parliament and protested because of my little warrior brother. Not something I ever thought I would do. I’ve won a journalism award because of something I wrote about Rory. I was never interested in writing until Rory came along and I found blogging as a way to get my voice out there!
Siblings with Down Syndrome are not a burden but more a key into a part of life we never thought we would see.
Some times we can be afraid to openly say that we are proud of ourselves. There seems to be a slight taboo surrounding it. But why? For me focusing on all the great things I have achieved, just makes me even more determined and motivated to continue. As we are now in 2018, I thought I would write down the things from 2017 that I am proud of.
I feel like I have 2 huge achievements from 2017.
First one has got to be the birth of Cleo, I was not prepared for the type of experience I had or the challenges I would face. I had a hard time recovering and getting over all the horrible feelings I had about my emergency C-section ( I will link my blog post all about it down below). Nearly 6 months later and I feel like I have come so far and I feel so much better about myself and the situation.
Second one is winning the Mencap Journalism Award in the print category. For me winning this has opened my eyes to the fact that if I put my mind to it, I can write and I can put my thoughts down on to paper. Never in a million years did I think I would ever win an awards for writing but Rory has inspired to and now that I am doing my diploma in journalism I will continue! (I will also link my Mencap entry post down below)
Then there is all of my little personal achievements. Reaching 20,000 views here on the blog! A stat I never thought I would see, but I am so happy that I did. Then there is getting Kings Lynn Town Hall lit up in blue and yellow for my little warrior brother in aid of World Down Syndrome day. Another big achievement not just for me but also for Cleo is working with Asda and Dr Hilary Jones. It was an amazing experience and the video that Cleo will always be there for me to show her when she is older. As well as the day of filming, I was also invited to The Ivy for lunch. It is something I will never forget!
There are so many little achievements that have made 2017 one of my best years yet!
Here’s to 2018!!
Links to posts:
Cleo’s birth story
Mencap Journalism Awards entry
Working with Asda and Dr Hilary Jones
In those next few weeks the word spread. The questions started and the judging started. While you were growing hair and fingernails we were dodging the unwanted questions surrounding your survival and existents. We didn’t notice, we were blind to it but the community began to fade into nothing. Those words spoken by that Sonographer ‘your baby has a thick Nuchal fold’ seemed to echo around our once tight knit community. We were completely unware that while one group of people left another was waiting for us. One that understood, one that didn’t judge, one where you could just be you. Time passed, people faded, information multiplied. While our lives prepared to change, yours was only just beginning.
As your family, we awaited your arrival, we waited and we waited until here you were. Still you. You were 3 days old when you faced your biggest hurdle. 5 long weeks passed before you, our little baby was allowed home. After facing so many hurdles and challenges, I still don’t know 2 years on how, a tiny fragile baby overcame so much. But then again you are stronger than everyone thinks. The next 2 years up until now have been overwhelming for us, but you have taken it in your stride. We have become part of movement, a whole new, unexpected door has been open and we now have the abilities and motivation that could move mountains all because you are still you.
Our community has the good, the bad and the ugly. The good; the ones that support and love you. The bad; the ones that try but still don’t know how to react to you then the ugly; The ones that see you as how I like to put it, a 2-headed monster. They refuse to accept you for one reason or another but in their world, you don’t fit. but would you want to?
Some people will accept you, some refuse to and we will never find out why. In our family, you are the glue that sticks us together strong that anything else ever could. Your still so small and Brother you have moved mountains just with your smile, with your strength and with your courage. With support, you will achieve more than most people. I will always tell you this; Just be you and never ever hold back. Be whatever you want to be. You have nothing to lose and everything to gain because whatever happens you will always still be you. You have nothing to stop you, the world is your oyster and the skies are the limit.
Some of the community may question you, some may even doubt you. But Brother, never listen to them. Yes, you are different. When has it ever been ‘cool’ to be the same. You are different, but you are everything we as a family have ever wanted and more. Watching you grow, develop and achieve so much is an honour. You have done more in your 2 short years of life than some people achieve in a whole lifetime. Having you as a Brother has made my life change. Everyone around you has changed. The people we have met, the places we go, the opportunities we have all because of you. All of this just because you are still you.
We have met families and made friends with people from all over the world. A picture of you and your awareness message has also gone all over the globe. You are so small and look so much different to the boy we all imagined when that Sonographer, in that room, said those words. But because of that diagnosis, you are you and wouldn’t have you any other way. Weither it is 1 or 100 people that doubt you. Never listen to them. As your family, we value and support you and we will always have you back. The community don’t need to be sorry, they don’t even need to understand if they don’t want to.
Thinking back, while we felt a million emotions, you were still you. While people asked, what felt like a million questions, you were still you. While doctors write a million words about you, you are still you.
But Brother, we got this. We’ve got you. To other people you are unanswered questions. To Nan and Grandad, you are a Grandson. To Mum and Dad, you are a son. To your Niece and unborn Niece, you are an uncle. To me and your other siblings, you are a Brother. We are your family, your supporters and you are our future. We love you from your blonde hair to your chubby cheeks to your palm crease to your amazing personality to your extra chromosome.
All because you are still you.
You can also find my entry on the Mencap website: https://www.mencap.org.uk/blog/still-you
To me it is so important to talk to people living with someone with Down syndrome when it comes to discussing DS. I love reading the blog, I am River.
The blog follows a little boy called River and his family as they have fun and laugher on their journey with Down Syndrome. I asked River’s mum, Hayley some questions all about her life with River! Here they are:
1. What makes you most proud about River?
There are so many! Honestly River fills me with pride every single day, he really is incredible. I would say that the thing I am most proud of is his sheer determination. As parents with down syndrome we are often told about all the things they won’t be able to do or achieve, and it’s often just assumed that they are just not capable. River has been feisty, strong and utterly determined since the day he was born, and along with all the other people born with Down syndrome that are achieving great things I just know he will break down barriers. He has already achieved so much in his short life and with a character like his, he will accept “you can’t do it.”
2. What do you wish you knew years ago about Down Syndrome?
I’m ashamed to say that before I had River I didn’t know anything about Down Syndrome. I would never have purposely disrespected a person or their families, but if I’d have thought about it I wouldn’t have a positive vision of what Down Syndrome means. I was completely in the dark and that’s why I don’t believe getting angry with societies ignorance is helpful, we were all uneducated once. I wish I’d known then that people with Ds can have fulfilling and worthy lives, that they can get an education, have active social lives and friends, get married, have jobs, have interests and ambitions, travel and have various levels of independence. I wish I’d known then that it really isn’t so different at all.
3. If you could tell your younger self one thing what would it be?
I wish I could tell my younger self not to worry about the future, because you will figure it all out and be happy. I was a completely different person growing up, and at one point I went through a period of partying way too much and not taking a whole lot of anything seriously. Even when I was doing it I always thought that I didn’t have a successful future ahead of me, I wasn’t doing anything to make that possible. But I would tell myself it’s fine, go ahead and enjoy it because you’re moulding the person you are going to become. I’d tell myself that I wouldn’t always be so useless and just might make a positive difference to others. I travelled, grew up and everything just fell into place. I now have a successful art business, a great husband and even greater children. I feel like I have a purpose and I wouldn’t change a thing. I’d tell my younger self to go ahead and enjoy those younger years because the future is going to be amazing.
4. What do you think the world will be like in 10 years time in terms of Down Syndrome?
I think the world is becoming more accepting, I must believe that the world is becoming more accepting. I really do though, and it may seem like a funny thing to believe when there is so much hate around, but I also see the good people fighting for change. There Is such a stigma around Down syndrome, but we need to remember that it wasn’t so long ago that our babies were in institutes and hidden away from the world. We really have come so far. And yes, the abortion rates and advances in prenatal testing are scary, but it is bringing out some warriors who are fighting for people with Down syndrome and are doing an incredible job. We have a long way to go as society is so scared of anyone or anything that is ‘different’ and that needs to change, but with so many people with Down syndrome making amazing achievements and so many advocates fighting for their acceptance, I do really believe the future is positive. Social media has played a huge part in this to, people with Down syndrome will no longer be hidden away and forgotten about, they are able to show the whole world their abilities and worth.
5. What inspires you most to blog?
I first started writing following River’s diagnosis as a kind of therapy, as it helped massively to just get things down on paper. I found a passion in writing and found I was good at it! I started a Facebook page not long after, and after it’s success I started our blog a year later. It’s been brilliant, right up there with the best things I have ever done and after only a year I made the finals of a huge blogging award. What started as self-care for myself and my family, has turned into what I hope is a useful and honest resource for parents. My son inspires me every day to carry on writing along with other who have that extra chromosome. I want to show the world what they are capable off and that Down syndrome really isn’t such a big deal. I write and share our lives because I want to give people with Down syndrome a voice in a world that sees them as less, I want to support parents without judgement and offer information to those that need or want it. It’s easy to write when you get to witness inspiring people every single day!
6. What is one piece of advice you would give someone new to the Down Syndrome community?
The best advice I could possibly give to new parents is to allow yourself to feel whatever you need to feel, without guilt. Allow yourself to feel sadness over your baby not living the life you had imagined for them, and allow yourself to be angry for what you feel you have lost. Everybody reacts differently and that’s ok, it’s all an emotional process and you need to go through it in order to come out the other side. You will come out the other side, and one day you will realize that you really didn’t lose anything at all. Your life did not become worse, it just became different and I think different is pretty fantastic. Your child is going to show you a love you never knew possible and a pride that will make you burst. A fierceness will be released in you that you never knew existed and you will soon realize that you are one of the lucky ones. Your life is going to be beautiful!
Thank you to the amazing I am River for being part in my Q & A series! Go check out their blog! It is brilliant!
Imagine this..
You are out with your family. There’s you, your children, maybe your partner. Your shopping.
Without any worries or cares you go and spend your well-earned money in major high street stores. While everything seems to be going ok for now, out of the blue your child needs to go to the toilet or has an accident. Seems like an easy situation? Just take the child to the toilet right? It’s so simple.
But what if it is not that easy?
Now imagine that your child is disabled. Many families don’t have to imagine this. It is just their life. Your child, you have desperately protected from bugs, germs, anything that may hurt them. But they need to go to the toilet, A basic human need, right?
Back to shopping in said huge multi million pound UK retailer, before there is an embarrassing accident for both you and your child, you go in search for a toilet. Most shops have a toilet. Its basic human need.
You find a toilet.
But remember, it’s not that simple. Your child has a disability which means that they can’t use a regular toilet. Whether it is due to the fact they are still in nappies and too big to use a ‘baby’ changing table or they are in a wheel chair and even a conventional disabled toilet doesn’t fulfil their needs.
Before we continue with imagining lets talk about some facts on public toilet as you will most probably be changing your child on a cold, wet and germ infested public toilet floor after all.
Now you know this would you be willing to change your child on a public toilet floor?
If the answer is no (which I hope it is ) Then you need to get behind the Changing Places campaign.
A Changing Place is a specialist space so people with extra needs can have a comfortable place to be changed or use the toilet. Many families are forced (a lot of stores don’t provide adequate facilities) to use dirty germ infested toilet floors to change their loved ones!
In reality no one would agree there is much dignity in this. The best way I have found to describe how horrid it is for major companies not to provide Changing Places for their costumers is this;
Ask yourself this – Would you be willing to walk in to your local public toilet and happily lay on the floor beneath a dirty toilet used by hundreds of people a day? Not knowing what germs and bacteria could potential be on that floor?
NO! So why should thousands of people everyday be forced to do this.
Changing Places provide adult sized height adjustable changing benches, hoists, enough space for a person with a disability and 2 careers, a screen or curtain to allow privacy, a non slip floor, large waste bin for disposable nappies and paper roll for hygiene on the bench. Changing Places should be provided in addition to disabled accessible toilets.
To learn more bout Changing Places check out their website.
If you know of any where that you think would benefit from a Changing Places then contact them and pitch the idea. They might not have one because they don’t know about them!
Please share this to spread the word!
When you are buying for a child with additional needs it can sometimes be quite tricky. There are many factors to think about: Is the product right for the children in regards to ability? Will it benefit them to have this product? How long will it last them? It is worth the price tag?
That is where this gift guide comes in handy, whether it is for christmas, birthday or just a special gift this guide will tell you what we think is the ultimate present. Rory has got a list as long as my arm of medical conditions that may have an influence on what we buy him. As well as Down Syndrome, Rory also has hearing loss and cataracts so he has sight loss. He has hypermobility which affects his muscles. I seem to always be on the look out for good toys for Rory as things like sensory toys are very important in his development.
This list will help guide you in the right direction in finding the perfect toy, Rory has tested out all of these products in the list so we are now a bit more about them and can tell you exactly how they helped him.
ToddleBike2*- We reviewed this a couple of weeks back after we were sent it, blog post link below. Originally the bike was meant to be tested by Elsa as I didn’t think Rory would have much interest. As Rory has hypermobility this means that his knee and shoulders can pop out of the socket, he basically dislocates his joints himself. In effect this can sometimes affect his balance and Rory is prone to falling over randomly when walking. Because of this we thought he wouldn’t be ready for a bike just yet BUT he has taken to the ToddleBike2 and races round on it all day everyday! It’s a great gift! Plus ToddleBike as a company has a great outlook on children with additional needs, I absolutely love their attitude and believe more companies should be like this!
Homemade sensory tunnel – We got this idea from Rory’s old Portage worker. As Jonny is a carpet fitter we found that old carpet tubes are a brilliant size to use as sensory tubes with flashy balls. We covered Rory’s in bright blue carpet to give it more of a toy like look and feel. Used with a bright flashy ball this is brilliant and cheap way to make homemade sensory toy.
Not my Books – This one is great depending on the age of the child. Not My Books come in loads and loads of different varieties from animals to vehicles. They can be found relatively cheaply and can be collected to have the whole set. Inside they have a story with corresponding touchy feely pictures. They use different textures and materials to create this books that can be enjoyed by children of all ages.
Sensory Pack* – Sensory is a big part of helping children with additional needs. It can help with fine motor skills, colours, language and so much more. Using sensory to support learning is encourage and it is also great fun! We were kindly sent a brilliant sensory pack from Sensory Treasures and we are amazed by the variety of items in the pack. At Sensory Treasures they ask you what interests the person has so that the pack or basket is bespoke to them and is perfect for their needs. From a flashy ball to a foil blanket, this sensory pack has all bases covered!
VR headset*- This interactive head set from Utopia 4D+ can also be used with just a phone or tablet if you child isn’t keen on having the headset on. You place the animal cards on a flat surface and watch them come alive on your phone. You can feed them with the special food cards that also come in the pack. It is the ultimate sensory experience for children that also need something visual in front of them to help them learn. There is a wide variety of animals in the pack and the graphics used to create the animals is great and the animals really do look real on your table. They also make space exploration and dinosaur experience as well as animal zoo so all bases are covered and it is fun and educational for the whole family.
To read my full review of the ToddleBike2 click HERE
Disclaimer – All products marked with * were sent to us to feature in this gift guide.
There are many misconceptions when it comes to Down Syndrome. People think they know about people with Down Syndrome when in actual fact they are the same as you or I. Alot of textbooks and peoples thoughts are very out dated which means there are myths about Down Syndrome still floating about.
Rory and I thought it was time that we sorted that out, so here are 10 myths that you probably didn’t know about Down Syndrome!
We received a brown box which contained this little lightweight pre-balance bike. At first glance it looks tiny and like a regular bike. As soon as I got it out of the box, Rory started to ride it. This might not sound like a big deal but trust me it is. Rory can at times find it difficult to have balance to walk so him riding a bike, we thought it was completely out of the question. Originally I was going to have Elsa test out the ToddleBike2 but that soon changed and Rory claimed the bike. There is just something about the ToddleBike2 that makes it easy for Rory to get on it and manuever it. I’m convinced it is due to the ToddleBike2’s small light-weight design. We didn’t think Rory would be riding round on a bike before his 3rd birthday but because of the ToddleBike2 he is riding round the house like it is a racetrack and loving it!
It can be used both inside and outside and is intended for children aged 18-36 months when they begin their cycling journey. The saddle and cross-bar are at a similar level meaning that a child can sit on either, where ever they feel comfortable.
The ToddleBike2 makes the transition between bikes easier for children, it’s practical and fun design encourages your child to be active as well as improving their balance. As someone who is very involved in equality for children with additonal needs I love that in the booklet that comes attached it says ‘ Toddlers need to mount and dismount without falling over so must be confident on 2 legs first 12-18 months * Some a littler earlier, Some a little later – it’s not a competition.’ All companies should have this attitude! It’s amazing to see a company that also has in mind children that may find it that little bit harder to achieve things.
I am so impressed with the ToddleBike2 and We will defiantly be recommending and telling people that the ToddleBike2 is a must have! The bike is also available in Pink, Blue aswell as Red and you can purchase them from the ToddleBike website and Halfords.
Disclaimer – We were kindly sent a ToddleBike2 from Toddlebike in exchange for an honest review. All opinions and views are our own.
The Coastal Mummy 