This is Elsie

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We are The Stones family, I’m Chloe, I’m married to Adam, and we have two fabulous children Elsie, 3 , and Seb, 2. Elsie was diagnosed post-natally with Down syndrome which came as a huge shock to our family.

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Elsie was a much wanted baby, the previous couple of years had been a very difficult time after losing my dad and brother and having to go through IVF, we were over the moon when we found out we were expecting a baby. Things were looking up at last! My pregnancy was just like anyone else’s. The same tiredness, sickness, cravings of mayonnaise and onion rings, and not being able to get comfy however many pillows I surrounded myself with. My scans were all very positive and with a chance of 1 in 5500 women of having a baby with any ‘abnormalities’ as they called it no-one batted an eyelid. When Elsie arrived two weeks early and it was explained that it was more than likely Elsie had Down syndrome I’m not going to lie I was heartbroken, after all that we had been through life just didn’t seem fair. With no knowledge of Down syndrome I was petrified of the unknown. I didn’t feel I was a strong enough person to be able to bring up a child with disabilities, but holding Elsie in my arms and seeing her tiny features and expressions I just knew Adam and I were going to get through this. The love and protectiveness I felt for her was overwhelming, we were going to give her the best chance in life we could. We spent the next week following Elsie’s arrival in hospital, which consisted of scans, tests and meeting various consultants. To be honest it was one of the most scary weeks I’ve ever had, watching my tiny baby being prodded and poked around by all different doctors and nurses not knowing what they might find filled me with anxiety. Elsie was proving everybody wrong, nearly everything in her tiny body was working as it should, the only thing that was detected was a medium size hole in her heart which the consultant reassured us would more than likely close up by itself without surgery, they were to keep an eye on it and hopefully it will repair itself.

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Elsie was very fortunate to only have to spend a week in hospital before she was discharged. It gave us as parents a chance to really bond with Elsie and get an understanding of Down syndrome. It was a very emotional time not only getting my head around the diagnosis but also a lot of grief resurfaced. The one thing my dad always wanted was to be a Granddad and I found this very hard that he wasn’t here to meet his Granddaughter. One of the things I found the most difficult was telling our family and friends about Elsie’s diagnosis and seeing them for the first time. Not because we were ashamed – I think it was more the fear of other people’s reactions through lack of knowledge, the “oh I’m so sorry” or “you poor things”. If I got a pound for the amount of people that have said that to me I would be millionaire! Adam was so much stronger than me with this and told our closest family straight away. He was my rock. Some people we chose to tell when they met Elsie. We didn’t want them to judge her and make an old fashioned presumption. By being introduced to our baby as Elsie and holding her first before they knew her diagnosis we found people could see for themselves she was no different to any other baby. We didn’t get much information from the hospital with regards to Down syndrome apart being given a basic leaflet and contact details for the DSA. We were guided by the community team most of the time and finding out information for ourselves. Elsie’s paediatrician was great too and was the first to recommend PSDS to us. At this point I didn’t feel ready to join any support groups. I had some friends with babies all born within months of Elsie so we spent a lot of time with them going for walks, attending baby classes and having lots of coffee. It was really important for me to do things that any other parent would do with their child when we weren’t attending appointments.

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In the back of my mind was the last thing the paediatrician had said before we got discharged from hospital: ‘Mix Elsie with anyone and everyone and she will learn and benefit from them greatly’. This has stuck with me and I have made sure as Elsie has grown up she has had opportunities like any other child and been included. Elsie has gone to a mainstream nursery and will go to a mainstream school. Since her little brother Seb arrived, Elsie has just thrived. The bond between them is so incredible and they are the best of friends. They learn from each other and have achieved milestones at the same time. There is 14 months between them and they are often mistaken for twins. Seb’s caring nature makes sure Elsie is always included whether it’s playing a game or giving her a biscuit. Don’t get me wrong it’s not always so peaceful – like any siblings a little scuffle can break out if one’s got a toy the other one wants! Seb is at that age where he is like a sponge, he learns and picks things up very quickly however Elsie will take her time and when she’s ready will achieve the same. Elsie watches Seb constantly and soon after will be doing the same as him. I often say Seb will take the most direct route to get there and Elsie, well, she likes to take the scenic route and enjoy the views!

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About 18 months ago, we went to our first PSDS coffee morning and joined the Charity. It felt like it was the right time for us. If I’m honest, now that we are members and have experienced what PSDS has to offer I wish we had joined a lot earlier. The families we have met and the support we have had through PSDS is just amazing and I can’t thank them enough. Elsie is currently attending DIGBIES, everyone is just like us as a family and it makes me happy to see Elsie learning new skills and making friends for life. I joined the PSDS Events Sub-committee late last year and now Chair the meetings which I’m really excited about. I work for a Charity too and so I felt I would be able to put my experience in fundraising and organising events to good use. I will be hosting my very own ‘Rock Your Socks’ coffee morning at a local cafe on World Down Syndrome Day as I feel very passionate about raising awareness and fundraising for PSDS. Hopefully it will be the first of many events! I know with the support of PSDS Elsie has a budding future ahead of her.

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Elsie will be four in May and is growing up so fast. Her hole in the heart amazingly repaired itself and so she has been discharged from the cardiologist. Elsie is becoming a very sassy little girl. She’s independent, and likes to learn how to do things for herself. Her favourite activities are helping me at home with the washing, cleaning and tidying up, she especially likes to clear away the toys and equipment at DIGBIES. Elsie adores looking at books and I will find her telling stories to herself in a quiet corner. Elsie is extremely creative and is always drawing, not always on paper may I add, I will often find little pieces of artwork on walls around the house!

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When I look back now at the start of our adventure with Elsie I wish I hadn’t been so scared and worried. Of course we have faced many challenges and I’m sure there’s more to come, but the fun happy times certainly outweigh the difficult times. I can honestly say having Elsie has made me into a better person, she’s taught me to appreciate the little things, to be strong, and to make the most of every opportunity. She amazes me every day with the things she achieves, she makes me laugh, and most of all she loves life. I can’t wait to see what the future has in store for her.

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Jenny – A very proud Granny

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Kate, my 2 year old grand daughter, sat with me waiting for the phone to ring. Her new baby brother or sister was due at any time. Finally, a very proud and excited dad rang to say we had a little boy and that mother and baby were doing well. As soon as they were settled we could go to see him. A little while later dad rang to say that the doctors thought the baby had Down Syndrome.

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I cannot describe the emotions I felt in those first few seconds before I had to answer. As a professional who had worked with young children for many years, I was not fazed by the baby having Down Syndrome, my thoughts were for my daughter and her husband. For me, from the time you have your own children you spend much of your life trying to keep them safe and happy, hoping their lives will go well. I knew I had to be strong, positive and supportive. They were already great parents and the baby could not have been born into a better family. I also knew that there would be much laughter and tears for us all in the years to come.

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For me and Kate, seeing the baby for the first time was the best. He was her baby brother and my first grandson. Nothing can take that feeling away.

Life with Sam, as he was named, has been a wonderful and varied experience. I moved South to be closer to the family and have never regretted it. There have been anxious times due to medical issues and developmental delays. On the other hand, each step he achieved felt like he had won an Olympic medal. I have watched him enter mainstream school where he has grown in confidence and made good progress. Watching him, from the side lines, play football, rugby and cricket, with his friends, for his school team meant so much to me. His many performances in the school plays, dancing and in stagecoach always makes me cry along with all the other families. Sam, like all children, loves to succeed and show his growing independence. We are so proud of him. He is funny, cheerful, polite and most of all very empathetic and loving. He has certainly changed my outlook on life. Although family life has changed because he has needed more support and attention than usual the rewards are enormous. I feel that as a grandparent I have been able to help with this as well as being a listening ear when needed. Wherever I go with Sam he brightens someone’s life and certainly makes me smile.

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Having Sam has taken all our lives in different directions to that we may have planned. However, our lives have been enriched not only by having Sam in it but by the many friends we have made along the way. I have been privileged to be involved in the setting up of DIGBIES for PSDS and working with children and their parents for some years. I have seen how the support, input and opportunities being created by PSDS have greatly helped the children reach their potential at each stage in their development. As a grandparent I am welcome and encouraged to come to all events and meetings where support is given to all family members. This has been great in helping me to support my family as Sam makes his way through life. For me, it has been brilliant to see how PSDS has responded to the changing needs of the children as they grow older.  Being able to take part in a growing number of out of school activities with his friends is proving very popular!

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Sam is very lucky to have such strong, loving parents and especially lucky to have a great sister in Kate. She is very protective of him but equally treats him like any other brother! So, going back to the beginning, my worries for my daughter will obviously never go away. She will continue to face challenges for Sam for years to come. However, being lucky enough to be closely involved over the past 11 years has made me confident that their lives, though different, have been greatly enhanced by both of their children in their own different ways. I am a very proud granny.

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I was asked if I had any advice for grandparents just learning that their grandchild had Down syndrome. I wouldn’t even begin to offer advice but all I would say is that all our grandchildren are very special to us and they are children first. Being there for the whole family and enjoying time spent with them, is just part of what we do as grandparents.

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Our Amazing Annie

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Our amazing daughter Annie was born by emergency caesarean 11 weeks early, weighing 2 pounds and 12 ounces and looking like a tiny doll. My husband Jon and I spent 3 months in hospital watching her slowly growing strong enough to come home with us. Annie’s big sister Grace held her hand through the window of her incubator and I remember feeling anxious about what the future may hold for Annie and wondering how life would be for us as a family.

We first heard about PSDS when we were in hospital. A lovely nurse that looked after Annie told us about the charity and I actually contacted them before we left hospital. I had been struggling to breastfeed Annie and phoned to see if anyone had been through similar problems. After a lovely chat with one of the trustees, I was put in touch with another mum who was really supportive.

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We attended our first family meeting when Annie was 4 months old. I remember how great it was to see so many children of all different ages and their siblings, running around, eating biscuits and generally having a great time. We felt really welcome and instantly relaxed and knew that we wanted to be part of this amazing charity.

Fast forward almost 5 years and our little whirlwind graduated from Digbies in July and has just started school! She is feisty, independent, determined, loving and hilarious in equal measure. Over the summer I have lost count of the times that she has surprised me and made me feel proud. I watched her first sports day, running down the track with a beaming smile, egg in one hand and spoon in the other. I watched her sail through her first solo swimming lesson without us in the water, quietly terrified as she teetered on the edge of the pool, threatening to jump in when the teacher’s back was turned. If someone had told me she would be doing all these things a year ago, I’m not sure I would have believed it.

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Annie attended pre-school for the past year and in that time she made friends with pretty much every child and parent in the playground of her new school. She says “hello, good morning” to everyone we meet and hands out high fives and fist pumps to all her fans. She has a great cohort of friends that have moved up with her into reception in her mainstream school. I would say I naturally tend towards the more introvert end of the personality spectrum but Annie’s outgoing and bubbly nature and tendency to talk to everyone we meet has meant that we rarely go anywhere now without making ourselves known to everyone and gaining lots of new friends!

When Annie was 18 months old, she started to have formal therapy sessions at Digbies. She has gained so much from going to Digbies and developed lovely relationships with both the therapists and the other children. I really believe Digbies offers something very unique and special to children and parents and we have been so lucky to have had the opportunity to benefit from it. This past (pre-school) year has been a bit of a challenge, trying to make sense of the EHCP (Education Health and Care Plan) and ensure that Annie gets the support she needs starting in reception at school. It all seemed pretty daunting at the start but as a cohort of parents at Digbies we really supported and encouraged each other. Parents of children that have been through Digbies and are now in school have also offered support, coming along to share their wisdom and giving us the confidence to fight for what our children need.

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Annie has made huge progress with her speech and language, social and general life skills at Digbies and it has been a brilliant preparation for her transition into school. Seeing Annie and her friends progress from week to week, celebrating every new achievement with their therapists and with other parents has been really wonderful. Our cohort of Digbies parents has been particularly busy this year welcoming 5 new babies. I’m not sure what they’ve been putting in our cake! We had a new addition to our family in November, baby Daisy, and she has been a big hit with her sisters so far. I will really miss seeing the other mums and dads at Digbies, sharing our ideas, tips, funny stories and pregnancy and new parenthood joys and struggles.

Digbies and PSDS have given so much to our family and we have tried to find ways to raise money to help the charity continue its fantastic work. When I say we, I really mean Jon who completed the Great North Run in 2013 and has signed himself up for a Tough Mudder this month too. My role has mainly been to nag him into training and pop the cork at the finish line.

We are excited to see what the future holds for Annie as she moves up to “big school”, knowing that we have the support of PSDS and of all the lovely friends we have made through being part of it.

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The Power Of PSDS

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Our daughter Lara is twelve now. That happened in the blink of an eye. A couple of weeks ago she was in London on a school trip visiting the main tourist attractions with all her fabulous friends and teachers from her new school. Minnie and I were worried for them all because of the awful terrorist incidents recently. To that end before the trip there was a briefing for all the pupils addressing any concerns they might have. When asked if there were any questions Lara’s hand shot up. She looked genuinely concerned. “Will we be allowed ice cream?” she asked. Well that lightened the atmosphere a bit. “Don’t Worry, Be Happy” is one of the great lessons that life with Lara has taught us, but that in itself isn’t enough. There needs to be something more substantial behind it and that something is the Power of PSDS.

Minnie, Maia and I moved to the PSDS heartland from London in 2006. Lara was a year old, we were uncertain about how the pieces of our jigsaw were going to fit together and, if truth be told, we were still a little emotionally vulnerable about her diagnosis. Minnie is instinctively more social than I am and when she was offered the chance to attend a PSDS Saturday morning get together she advised me that it would be a good idea if I came! We never looked back. In joining PSDS we have become part of a community. We share our highs and lows, learn from others, give something back, value the power of togetherness and grow as people. In our vulnerability we found security and then strength. So the first ingredient in our PSDS power mix is a sense of belonging for all the family and that provides the foundation for everything else.

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We all know that good things tend not to happen by accident. There is a structure to what we do at PSDS that enables us to move forward. Speech and Language, Occupational Therapy, Education days, drama, in school support, social events and a myriad of other PSDS led initiatives have given Lara the platform to flourish in primary and secondary school and set herself up for what we hope is a bright and fulfilling future. Without the services provided by PSDS, and the excellence of our team of professional supporters, we wouldn’t have known where to start. It is so important to have a sense of where one is heading and PSDS provides the route plan for the journey. To have regular access to the expertise that PSDS provides is a catalyst for so much. It’s empowering.

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I’ve talked about the sense of belonging but that wouldn’t be possible without great people. We have our fabulous children and their siblings, our passionate and caring parents, our inspiring and committed team, our generous and engaged supporters but above all we have Vicky, Helen and Sarah the founders of PSDS and the heart and soul of the charity. I’ve been privileged as Chairman to watch “the three witches” in action and it is something to behold. They want the best for PSDS and are intelligent and able enough to realise their ambitions. Above all they love what they do and have brewed a heady potion which will power PSDS into the future.

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These ingredients mix together to give PSDS an extraordinary positive energy. We are a vibrant charity. There is laughter, fun and celebration in all that we do. Even our logo bursts with colour! Our Big Summer Sleepover, This is Me exhibition, Quiz nights, Fun Days and myriad of other events capture that spirit and project it on to the wider world. There is a magnetism to PSDS that makes our wonderful supporters want to engage with us. PSDS provides us with security, then hope, then ambition and then strength. I feel so lucky to have been Chairman for the last ten years and look forward to my new role as Patron. PSDS is a force for good…how powerful is that!

Zach’s new world of sound

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An introduction to Zach

Zach is now 2. He’s a happy, playful and adventurous little boy. Zach’s had a challenging start to life. At nine days old he had emergency bowel surgery at Southampton General Hospital and then went on to have two more emergency operations on his bowels. He also had heart surgery to repair a large hole in his heart when he was six months old.

When we began to suspect he was deaf

I can clearly remember talking to a nurse who was caring for him after one of his bowel operations when he was 6 weeks old. I commented on the fact that Zach wasn’t responding to sound, she agreed with me. Once we got him home he had a hearing test at our local hospital which confirmed he was profoundly deaf. Further tests confirmed he had a condition called Auditory Neuropathy Spectrum Disorder (ANSD) – a real tongue twister! Simply put, this means that sound doesn’t travel to the brain effectively. We were told that without hearing Zach will never be able to access speech. This floored us. We were devastated. He had been through so much already, it just seemed so unfair. Zach began wearing hearing aids which were at full volume, but even then reaction to sound was intermittent and as he got older this reduced.

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Hello wonderful Cochlear Implant Team at St George’s Hospital

When Zach was nine months old we asked for him to be referred to the Cochlear Implant Team at St George’s (we had heard about this team through his Hearing Impairment Teacher). This referral triggered a year of assessments carried out by the Cochlear Implant Team. These included hearing tests and speech and language assessments. The purpose of all of this was to see if Zach was a suitable candidate for Cochlear Implants. CT and MRI scans confirmed that he was suitable for the surgery.

Wednesday,10th August 2016 – Family Meeting

At the end of a busy year of tests and assessments we were called to a family meeting to receive the lead consultant’s and his team’s decision. This would be the moment we would find out if our precious baby boy could have Cochlear Implant surgery and with that the gift of hearing and speech. We walked into a meeting room full of medical professionals. We felt apprehensive yet ready to fight our son’s corner. We needn’t have worried as it was decided that this was right for Zach. There are no words to describe how Mike and I felt. Our little warrior will hear, he will speak, he will hear us say “I love you”.

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Don’t get me wrong, it wasn’t an easy decision to make. There was a brief moment when I rather foolishly nearly put a stop to everything. The reason – “There is a risk of facial paralysis”. The consultants words were like a smack in the face. There’s a chance our Zach won’t be able to smile if nerves are damaged during surgery. To be fair to the consultant he was doing his job by making us aware of the risks involved, but this is rare and has never happened at St George’s. A few glasses of wine later and I saw sense. Zach will have Cochlear Implants. Bring it on!

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Friday, 13th January 2017

Yep, that’s right, Friday 13th!! The date of Zach’s surgery. It was a ridiculously long day. We kissed our little warrior goodbye and handed him over for surgery…again. Seven and a half hours later we were reunited with an irritated, thirsty and hungry toddler. The surgery went well.

Monday, 6th February 2017- Switch On Day

Off to St George’s Hospital we go! This is it! Zach had recovered from his surgery and was doing great. He was ready. We sat in a soundproof room with the best audiologist in the world (we think he is amazing) and waited for Zach’s first reaction to sound. The poor child leapt off his dad’s lap and cried in a way I have never heard before. In truth he was distressed. He had gone from a silent world to this new thing called sound and he wasn’t too impressed. He didn’t like us very much and he certainly didn’t like the poor audiologist. This sounds awful, I know, and I struggle to watch the footage of that moment, but believe it or not this is excellent. We were warned that he may cry.

He is getting the full range of sounds and frequencies hence his dramatic reaction at switch on. The days that followed were hard and emotionally draining. He continued to cry when we put the speech processors on. We were told by the audiologist to be strong “We move forward now” were his exact words. Our normally gentle audiologist never sounded so stern! Although it was a difficult time, we were reassured by the audiologist that it would get better and this was the right thing for his development. As a family we had to fight the urge to give in and take them off. We all just wanted to scoop him up and make it better. We supported each other and persevered. We knew Zach needed this to “move forward”.

Life with his speech processors

Once you get over the fact that there are magnets in your childs head that the speech processors attach to, then these are straight forward to manage. Zach can be a pickle and has figured out that they come off when he rubs his head against things. That’s why he now wears a special headband and yes he does look like something out of the ‘80s, but it helps to keep everything safely in place.

Magical moment at Digbies

Mike and I realised that persevering in those early days after switch on were starting to pay off. We had this wonderful realisation at Digbies. As always, we would all sit in a circle on the floor and sing & sign together. Zach used to be oblivious to what was going on when this happened and would do his own thing despite my efforts to include him. At his first Digbies after switch on we sat in a circle to sing songs and Zach sat up and listened. He was listening! He smiled at all of us. He was listening (yes, I said it again). Everybody commented on the positive change in Zach. The lovely thing about our fellow Digbies mums, dads and therapists is that they’ve seen the before (profoundly deaf Zach) and that they are a part of this journey and will witness Zach as he embraces this new world of hearing.

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Today

Three months after switch on and he is doing well, reacting more to sound as he learns to listen and communicate. He is attempting to mimic us. For example, he will attempt to say (sound) ‘Ready, Steady, GO!’ and ‘Bye Bye’. There have been several visits to the audiologist at St George’s and each time there has been a volume increase. Zach is almost at full volume which will be reached in the next few weeks. He still has a lot of work to do, but he’s doing it and having fun! He is now starting to associate sounds with actions, people etc. WOW! What a journey, but this has been a massive blessing. Only 3 months in and we are already seeing good things in Zach. Members of the Cochlear Implant Team have said that Zach is making excellent progress beyond their expectations. This is a life-changing event, we are so grateful to the team at St George’s for everything they have done and for the continuing support they are giving to our little warrior. We are excited about where Zach is heading next on this journey. It’s definitely going to be an adventure for him.

Watch out world, here comes our little hero, armed with this speech processors!

My sister, Thea

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My name is Rowan. I’m nearly 14. I live with my parents, two cats and my sister Thea.

Thea is 2 years younger than me and we both love Taylor Swift, Little Mix and lots of other music (Thea is a BIG 1Direction fan but I’m not). We love going to Costa, bowling, having sleepovers in my room (or in the tent) and we also like going swimming. We love Pizza Express and a café called Rialto because it has bubblegum flavour ice-cream. But our favourite food is Thai – dim sum is our favourite but Thea likes rice and I don’t.

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We like going to Spain on holiday because we love showing off our skills in the pool, going to the beach and eating out with mum and dad.

I like more sports than Thea, but she is mad on gym, dance and drama. She’s got some moves! Sometimes it’s a full disco in our house with flashing lights and Thea is the DJ – and that is sometimes my Sunday morning alarm call.

We do argue and get on each other’s nerves. Thea can be really annoying when she plays the same song over and over again on her i-pad. All in all I like hanging out with Thea. She’s got a wicked sense of humour, a mad laugh and a really amazing memory.

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Thea finds maths quite hard, but she likes having a tutor on Saturdays because she gets chocolate as a reward.

Oh and by the way…Thea has Down syndrome. I don’t think it’s a really big deal and she doesn’t either.

Having Down syndrome doesn’t change Thea, it’s just part of who she is. I think she is pretty cool because she has to work hard at some things. She is my role model. Things that I find easy aren’t easy for Thea, but she doesn’t let that get in her way. Last year she couldn’t score a goal in netball but now she can and she’s always on my team when we take on mum and dad.

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What bothers me about Down syndrome is what other people think they know. Or when they use it to criticise someone or put them down or make them feel stupid. They have no idea what Down syndrome means. I’ve heard people say things like “You are such a Downie!” and it makes me feel upset. They don’t know anyone with Down syndrome or what it means to have Down syndrome – they just use it as an insult and think they are being cool. But they are not.

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If I could make them understand what Down syndrome is, I’d say “it’s only an extra chromosome and people with Down syndrome aren’t different to you or me.”

Having Thea as my sister sometimes makes me feel emotional when I hear people saying stupid things. But it also makes me understand and care about other people too. I’m proud to have Thea as my sister and my friends think she is amazing (even though she annoys them too sometimes!

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A week in the life of the Grover family

Let me do a spot of scene setting… We are a family of 4, well 5 if you count the cat! Richard (Daddy), Manda (me, Mummy), Jessica and Jack (15 month old twins, Jack has Downs Syndrome). I thought I would tell you about the week we have had. I knew it was going to be a bad one when our boiler packed up (leak and hot water not working) last Friday. Luckily we have a British Gas service plan so called them out – couldn’t fix it till Monday, so we moved in with my parents for a few nights! Then the double buggy broke, so you get the gist of where I am going with this!

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On the Saturday Jessica woke up full of cold, sore throat and feeling very sorry for herself. Poor little snot monster! I also didn’t feel too good, so Jessica and I had a duvet day. Immediately I started to worry about Jack. Ever since birth he has had issues with his breathing when he gets a cold and has been in and out of hospital with bouts of bronchiolitis (which I know isn’t a major health issue, but for us generally means a stay in hospital and juggling Jessica and who looks after her). I could see Jessica was really struggling with her cold and knew it would mean Jack would have a real problem if he caught it. He has been so, so well over this winter too – looking really bright and strong, I was dreading it. By Monday I felt worse (lost my voice and had a very sore throat, good for the diet though as didn’t fancy eating anything!) and Jessica was still full of the cold. I went off to work and left the twins at my Mums. She normally has them on a Monday night anyway so I knew I could try to get a good night’s sleep and start to feel better. My Mum let me know that Jack had woken up full of the dreaded cold. She knew what signs to look for if he struggled to breathe properly so I felt comfortable she would look after him well and I could try and get me better. She bought them back on the Tuesday and Jack was really starting to struggle, snotty, coughing and not looking his best. But he was still eating well – always a good sign! The heating was back on, but no hot water!

Jack had a physio appointment on Wednesday and I was desperate for him to feel a bit better so we could show off his crawling and standing up. At the previous appointment he was just commando crawling, pulling himself along, but now he was on all fours and quick with it! We had also been invited to go along to a Portage session. Jack is on the wait list for Portage, so I really wanted us to show our faces! I still felt rotten on Wednesday but we got it together and popped to the Portage session. It was brilliant! Lots of play time and we got to see Joe there too. We met Joe and his family at a PSDS meeting so it was lovely to see them again. Jack wasn’t really enthusiastic about the session, Jessica had lots of fun though! She was definitely feeling better!

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We just managed to get home in time for the physio! Jack showed her his new moves and she was suitably impressed with him – I was full of pride. She booked in for another appointment in 4 weeks and said she wouldn’t be surprised if Jack is walking by then! I can’t tell you how proud I am of him and how well he is doing. Jessica has been walking for a while now, I can’t help but compare the two of them even though we all know every child develops at different rates. To imagine Jack walking too fills me with mixed emotions – dread that wherever I go I will have two of them running off, no doubt in different directions. And huge pride that he will be up and running. Gas man came again and still couldn’t figure out the issue with the water! He would send a plumber on Thursday as he thought it might be a water pressure issue. Grrrrrrr!

Thursday came and we were still without hot water! Jack took a turn for the worse and his breathing became very quick and he was clearly struggling with it. I rang the Child Assessment Unit (CAU) at East Surrey. Jack has a passport to the unit, which means that we are able to go there at any time without referral from a doctor. They said to bring him in to be assessed. My mum rushed up to look after Jessica for the day and to be there to let the plumber in! Off Jack and I went to hospital. I took supplies as knew we were likely to be there for a good few hours, if not the night. His sats were good, slight temperature, but breathing at a rate of 60 breaths a minute (should be around 30-40). The doctor then assessed him and could hear a wheeze on his chest – which I had suspected. They gave him 10 puffs on an inhaler and said we needed to wait an hour to see how he reacted to it. Well, it didn’t do too much for him so they decided to give him a nebuliser. He managed a bit of lunch after that and seemed to perk up a bit and his breathing eased. They suctioned out his nose and it really bled when they did it, but did manage to get a lot of snot out, which would help his breathing too. After 8 hours there they were happy for us to go home. I was relieved we didn’t have to stay in the night. We went home with the inhaler and instructions to give it to him every 4 hours and then start to wean him off it by reducing the amount of puffs he had. It had started to really snow, so took us ages to get home and what do I get back to? Still no hot water!

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On Friday Jack went downhill again. He was very lethargic and vacant. We waited to give him some lunch, which he refused (very unlike him) and I decided that he should go back to hospital again, rang CAU and they agreed he should be seen again. This time Richard took him and I stayed at home with Jessica. His breathing rate was back up in the 60’s again… They monitored him and after having his inhaler and after a few hours were happy he came home again. His breathing rate had gone down to 35 per minute, excellent work Jack! Gas man came whilst Jack and Richard were at the hospital and said he needed to get a new circuit board for the boiler – still no hot water!

By Saturday Jack seemed so much better – still wasn’t eating much but had a bit and perked up as he wanted to play and crawl around. Thank goodness! Gas man came early and got the water hot again! Today was a good day! What a week we had! But finally things were on the up for the Grovers! Huge credit to the team at CAU in East Surrey, what an amazing team they are. Always happy to see Jack and give him lots of cuddles as well as getting him better. Good report from the physio and we managed to get a taste of what is to come with Portage. Ticks all round in the end!

Next week is a quieter week and hopefully nothing else breaks down on us!
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