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sunshineandsmiles.org.uk

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Tell it right Start it right Leeds Down Syndrome Network

Things to think about when telling expectant or new parents their baby has Down syndrome sunshineand smiles.org.uk 0113 226 8457

SunshineAnd SmilesLeeds DownSyndrome Network

07902 054355

@Sun_ Smiles Leeds

Includes contact details for other helpful groups


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Charlie

Useful contact Down’s Syndrome Association www.downssyndrome. org.uk 0333 121 2300

with Jodie

I don’t understand why people can be so negative about people with Down syndrome. Having Charlie has been nothing but a positive experience for our family, particularly our other children.


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Gian

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with Sarbjit and Jatinder

I will never forget the moment when I was told that Gian has Down Syndrome. I had a feeling after his birth that Gian may have Down Syndrome but I was so positive and ready for the beautiful journey I was about to take. The support given from the staff was very good and professional. I remember being handed a wallet full of leaflets, hand outs and booklets for me to read.

Useful contact Leeds Mencap www.leeds mencap.org.uk 0113 235 1331

I remember coming home and putting the information about Down Syndrome and Learning disability support services in a drawer. I just wanted to enjoy every moment with Gian our new baby and not read loads of literature on Down Syndrome. I knew that Down Syndrome is a life-long condition which causes delays in learning and development but I also knew early intervention will be needed. Six months later I managed to get the courage and make contact with support network groups like Leeds Mencap, Bradford Down Syndrome support group and Sunshines and Smiles. I remember putting down the phone and having a cry but also remember having two wonderful supportive parents by my side encouraging me that Gian is going to be fine and have the ability to do great things in his life. Within the Asian community there can be negative attitudes towards children with a learning disability. There is a lack of awareness and understanding with regards to learning disabilities within the Asian community and this may mean that a child may fall behind because of the lack of early intensive interaction and intervention. We hosted a wonderful event at the Sikh Temple in celebration of Gian’s 1st Birthday. For us the day was a special occasion to celebrate Gian’s health and well-being but also to raise more awareness within the Sikh community regarding Down Syndrome. The aim of the event was to dispel any negative attitudes or blame placed on a family and to highlight the potential in all children with Down syndrome recognising them as a gift.


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Luke

We think this poem by Terri Mauro sums up with Cherie and Rich how lucky and blessed we feel as Luke’s parents

Oliver

with Katie

Having a child is the beginning of a journey.

All parents go on a journey whether they have a child with Down Syndrome or not, it’s just a slightly different route: you are going along and enjoying yourself (everyday stuff), sometimes it’s more exciting (especially seeing your child reach milestones!) sometimes it’s tough/bumpy (not sure where things are going or things aren’t moving forward) sometimes it’s a bit scary (thinking about the future and the unknown) Take each day and each part of the journey as they come and enjoy what special times you have together! We are all on a journey and will experience similar things at some point, you’re not on your own.

You are blessed – Terri Mauro 2006 It may feel like a curse sometimes, but having a child with special needs bring with it abundant opportunities for grace. It slows you down and allows you to enjoy the little things – a calm quiet day, a hard won skill, a spontaneous hug, a pleasant conversation. Where other parents are driven to find their children’s success in high grades and high scores on the playing field, you are granted the privilege of focusing on the things that really matter, teaching your child how to love and care and communicate on the more basic level. You know what’s important and because you are not caught up in the trivialities you are more able to appreciate that so much more deeply. Miracles happen every day if you only know where to look for them.


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Lyall

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with Sharron and Steph

Sometimes superheroes reside in the hearts of small children fighting huge battles

Useful contact SNAPS Leeds www.snapsvol.org.uk 07964 847775

At our 20 week scan we found out Lyall had a life threatening heart condition, probable Down Syndrome and many other potential health issues. Lyall has overcome enormous medical challenges. He has had 2 open heart surgeries, complex stomach surgery, was 24hr ventilated for over 2 years, has a tracheostomy and chronic lung disease. He faces more surgery in the future on his airway and heart.

Do not go where the path may lead, go instead where there is no path and leave a trail

Despite all this he lives life to the full and has the capacity to light up a room with his beautiful smile and infectious enthusiasm for everything he experiences. Our message to people is ‘Don’t ever make value judgements about quality of life!’


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After seeing her siblings going off to university and gaining their independence Lydia wanted and needed to do the same. Gaining a 3 year residential placement at The Linkage Community Trust in Grimsby has enabled her to do that. She absolutely loves it and is becoming more independent and achieving goals we never thought possible. Linkage College has empowered Lydia. She has made many friends, joined in with the numerous activities offered there, continued her educational needs and developed her social skills all within a safe, caring environment. All of her complex needs are met fully and faultlessly by the very enthusiastic, experienced and qualified staff both in the college setting and at the house she lives in along with 5 other young adults. She is involved in a continuously monitored 24 hour, 7 days a week programme which stretches her capabilities more than ever before. More than anything Lydia is very happy at her ‘university’ (Lydia’s own words) and is living her dream! One that all young people with learning disabilities should have the right to access.

Lydia with Lynda

Useful contact Down Syndrome Training and Support Service www.downsupport bradford.btck.co.uk 01274 561308


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Sophie

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with Kath and John

The challenges, the medical issues, these were explained at the time of diagnosis. However these are not what we now reflect on at the end of the day, it is the positives of which there are so many. The new word or sign that Sophie has learnt. The infectious laughter and, as one nurse called it, her 1000 watt smile. Her love for life and appreciation of the things we so often take for granted. Her complete trust in everyone she meets. Her wonderful sense of humour and ability to make those she meets smile and laugh. The list goes on. These cannot be explained but only cherished, which we do.

Useful contact Wakefield and District Down’s Syndrome Support Group www.down syndromewakefield. co.uk 07814 367594

Lauren

Hi my name is Lauren.

I am 14 years old. I live in Leeds with my family. They are my dad, mum and 2 brothers. We have 2 dogs. I go to Abbey Grange Academy and am in year 9. I like dancing and gymnastics.


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Just over 4 years ago, after a perfect home birth, our beautiful daughter Thalia was born. I remember holding her in my arms; in awe of this tiny, perfect life... After a while I ventured to say what I had been thinking from the moment I saw Thalia... ‘I think she has Down Syndrome’...

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Thalia

with Ailith and Kevin

I wouldn’t change you for the world, but I wish I could change the world for you...

There were lots of ‘ummms’ and ‘maybes’... the midwives checked for physical signs... a larger gap between the big and second toe, just one crease across the palm of her hand... her eyes and her face told me all I needed to know... subsequently we were transferred to hospital for diagnostic blood tests and to check Thalia’s heart. Lying on the hospital ward at 5am I was wide awake... desperately excited to get to know our new daughter, determined that we would give her all the love, care and support that she would need... and worrying about what the future would bring for her. My husband, Kevin, texted our friends and family, he explained that it was very likely that Thalia had Down Syndrome and what he wrote was just right... ‘Thalia Skye was born on 17th February at 12.39am... we celebrate her arrival into our family and treasure her for who she is and who she will become’. Thalia has changed our lives just as any other child... she brings us joy, worries, frustrations, amazement ... and most of all inspiration and determination.

Useful contact Huddersfield Down Syndrome Support Group www.hdssg.org


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