My Journey with Miles M iles was born in August 1999, a long-awaited and much wanted first baby. My pregnancy was routine other than a few bouts of morning sickness and I remember feeling very lucky and deliriously happy to be pregnant at long last. When the big day came, my labour and delivery all went smoothly. After two and a half hours, my precious baby was born and I held him in my arms for the first time. I was so proud of myself; I was totally elated. Sadly, this joyous feeling was short-lived. Some minutes later, Miles was being given a bath and I saw his little face. An overwhelming sense of despair came over me; I had a sinking feeling like I was falling into a big black hole and my stomach lurched. I looked at my husband and said: “There’s something wrong!” and then said to my wonderful midwife “I think he’s got Down Syndrome”. She tried to reassure me I was wrong. But instinctively I knew I was right. I didn’t cry; I was in shock. My very first thought was bizarre and I blurted out in panic “What are the neighbours going to say?” I felt a mixture of shame and fear. I even said that I couldn’t possibly breastfeed him. I was utterly distraught. Shortly after, a paediatrician came and said he couldn’t confirm just yet whether Miles had Down Syndrome. He had a number of characteristics that suggested he might, but only a blood test could confirm the diagnosis. The paediatrician was very gentle and softly spoken and told me that he had a cousin with Down Syndrome and that he was the
Down Syndrome Information and Support Down Syndrome Association National organisation helping people with Down Syndrome www.downs-syndrome.org.uk 21&Co Down Syndrome Support Group based in Surrey www.21andCo.org.uk MeToo & Co Twickenham-based charity supporting children with additional needs, their parents, carers and siblings www.metooandco.org.uk Three Wings Trust Richmond-based charity supporting children and young people with additional needs www.threewingstrust.org
Tracy signing with Miles
nicest person he knew. I felt comforted by his comment, but yet was still numb. We stayed in hospital for a whole week because I was simply too scared to go home. The two-week wait for the test result felt like an eternity but I knew full well what I was going to be told. Looking back, those early weeks and months were dominated by a crushing sense of loss: I was mourning for the baby I thought I was going to have and for the family unit I thought we were going to be. Yet, here I was with a delightful little boy, alive and kicking - no-one had actually died! An instinct kicked in and I knew I would not give up on Miles and couldn’t let myself succumb to this feeling of grief. Instead, I developed a strong need to learn, get involved and be proactive. Within eight weeks I had joined the Down Syndrome Association; two
Down’s Side Up Informative and supportive blog by mum of Natty, a child with Down Syndrome www.downssideup.com Singing Hands Baby and Toddler signing classes and sign language resources in Twickenham and Teddington www.singinghands.co.uk Tiny Talk Baby and Toddler signing classes in Kingston, Thames Ditton, Cobham and Weybridge www.tinytalk.co.uk The Makaton Charity A Language system featuring signs and symbols alongside speech to help support communication development www.makaton.org
By Tracy
Upton
groups for families with children with additional needs, baby massage; swimming classes; and my NCT group coffee mornings. I went into overdrive! Within a few months, Miles started various therapies and I began to learn a basic sign language called Makaton, as children with Down Syndrome usually have delayed speech and language development. And so began our journey together. Grief turned to acceptance; fear and shame gave way to pride and joy in what Miles can and will achieve in life. At last, I whole-heartedly embraced the new direction that I was going in as a parent. I realised that our life was not over – it was just going to be different. Without question, it can be difficult and challenging, but Miles has enriched and enlightened my life, the life of his brother and of all those that he meets. Likewise, I changed and I was inspired to develop a fulfilling, new career as co-founder of Singing Hands, a local baby/toddler signing company which raises awareness about the benefits of signing for all children. We have done incredible things such as creating songbooks, CDs, award-winning DVDs. We have worked for Cbeebies and in amazing settings such as hospices, schools, nurseries, and at Great Ormond Street Hospital. So, this is how life is for us now – we are in a good place - and it’s all because of my lovely boy (now a teenager!) called Miles.
Toddler Sense
18 months to 3 years
The new adventure play programme from Baby Sensory
Adventures include: - Space Adventure - Cheeky Monkey - Rock & Roll - Circus - Magic Show
Classes run weekly in Addlestone and Kempton Park For more details contact Jo Ashe on 07810 540 352 or email Weybridge@toddlersense.co.uk
www.babysensory.com
Baby Sensory
Award Winning Baby Development Classes Designed for Babies from Birth to 13 Months
Sessions held weekly in Egham Hythe Staines Lower Sunbury Addlestone & Weybridge For more details contact Jo Ashe on 07810 540 352 or email Weybridge@babysensory.co.uk
Visit www.babysensory.com
November-December 2012
www.familiesuponthames.co.uk
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