Here are a selection of quotes from families in our group, on their feelings and experiences of having a child who has Down Syndrome. The children concerned vary enormously in their age, ability and character, in an effort to provide you with a good cross section and variety of experiences.
I have a son with DS who is now 14 yrs old.
I can very clearly remember being told by the consultant that she was 95% certain my baby had Down Syndrome about 12 hours after he was born, and I clearly recall my horror, heartbreak and despair on receiving this news. I was completely devastated, thought my world had ended, and my vision of our future was not a pleasant one. How wrong I was!!.
I'm aware that as parents we can vary enormously in the timescales it takes us to reach a much more positive perspective and I know that I actually came around to a positive way of thinking quite quickly really. I knew he was mine, and that I would adore him and protect him no matter what. In the years I have spent supporting other parents I have seen all extremes of reactions including mums who haven't shed a single tear, and have just got on with it, and parents who seem forever saddened.
I know that in the early days I did spend time rocking my baby and weeping and wishing for the child I'd imagined I would have, but it didn't take long before I just loved and adored him so much that nothing and no-one could ever have taken him from me. He needed open heart surgery at 3 and a half months old which was terrifying for me, I never left the hospital once in the whole 10 days he was there, because I was so terribly frightened that I might lose him - but I needn't have been so scared - he just sailed through it brilliantly!
At 18 months old I was told by a physiotherapist that he had extremely poor muscle tone and that although I would have to try to encourage him to do physical activity - he would never be sporty! I was also told before he started school that he probably had 'verbal dyspraxia' and that it was quite possible that his speech would be so poor that he would never be understood by an unfamiliar listener.
How wrong were THEY?!!
I now have a lean mean skateboarding teenager who likes nothing better than football, skateboarding, basketball and snooker! He is also crazy about cars and joyfully watches endless re-runs of Top Gear on the 'Dave' channel! He can hold a reasonably good conversation with just about anyone and was very articulately able to ask for a Bugatti Veyron or Subaru Imprezza for his fourteenth birthday! My handsome, sporty, young man, who brings a smile to my face every single day of my life, is quite simply nothing like the vision I imagined when that consultant said I am 95% certain your baby has Down Syndrome.
I cannot begin to tell you what he has brought to our lives, and I can honestly say
that I wouldn't swap him
for all the world!
'I'm sorry but we suspect your baby may have Down Syndrome'.
Those are not the words you expect to hear halfway through your pregnancy.
Your mind goes completely blank and all the negative stereotypes go through your head. It is impossible to stop them; no matter how positive a person you normally are, the immediate, split second reaction is negative.
No one can prepare you to deal with this news either during pregnancy or after your baby has been born. But further down the road, when a little positivity is starting to creep in, the truth is that Down Syndrome, whilst it may feel like it at the time, is not the end of the world. Yes, things will be different to how you imagined them and yes, you will have to make some adaptations to your life's plan, but there are so many far worse medical conditions that a child can have. Your baby will still have a full childhood; will be able to enjoy with excitement and wonder things like their first birthday, Christmases, their first encounter with snow, seeing animals for the first time and so much more. Perhaps not in line with ordinary milestones but in their own time they will speak, walk, run, swim, play and do absolutely everything that you would expect for a little child, full of fun and mischief.
My little girl is 4 years old now and she is absolutely amazing. She has brought so much love and laughter to my husband and I that we cannot imagine ever being without her. Every achievement is celebrated, every milestone involves calls to grandparents to share the news. Her little sister adores her and they play beautifully together. She has the most wonderful temperament and chilled out approach to things and yet she has a wicked sense of humour! She loves books, music and swimming and, like all four year old girls, loves Peppa Pig and playing with her dollies.
There is no doubt that having a child with Down Syndrome brings challenges, but all children bring challenges, it is just that they are simply different challenges.
My little angel is such a happy, smiley child and so very, very loving. Her affection is indescribable
and her love for cuddles, hugs and kisses melts my heart every time.
I arrived late to this world of Down Syndrome!
I met my partner when her son was 9 years old and was very surprised to discover I had a new best mate within all of 5 minutes which came as a bit of a surprise to me and also, I later discovered, to those who knew him better.
I had already raised three of my own children and thought I knew what it was all about but my new best mate has taught me differently! Initially he fascinated me with his quirky character and his unique and often bizarre view of the world, he frightened me with his ability to escape and he exhausted me with his endless chat and questions.
However, he quickly became so important to me that not to have him there would be like missing a limb. We have both learned a lot from each other and I am particularly pleased with my success at having taught him to ride his BMX.
Having arrived so late I missed the traumatic time of being given that diagnosis and for the most part I am grateful to have done so, but feel that maybe the loss of that experience means there is a part of this world that I can never share...
So now I see the world at least partly, through his fresh and innocent eyes and my life is, as some have pointed out, challenging but never dull!
My daughter was born at home, which was definitely not the plan. It was all such a drama that my little pink bundle was just handed to me to cuddle and the midwives said they would come back in the morning. I snuggled her all night and we made all our phone calls to family to tell them of our new arrival.
The next morning my husband walked up to me at the window and said don't you think she looks like one of those children who have Down Syndrome? Don't be so wicked, I said she does not! At that moment I stared out of the window and knew. He was right. I pleaded in my head for it not to be true and decided that I wouldn't let anyone else say it out loud.
When the midwives came and started saying things like do you think she is a little floppy? I very quickly said no, she's fine just a little sleepy.
I avoided the Tuesday afternoon weighing sessions at the health centre and made sure any visits by any professionals were very short. By the end of the month my daughter hadn't gained much weight and had developed a rash. I spoke to the doctor (never mentioning the words Down Syndrome) who referred us to a paediatrician.
My husband and I took our tiny little baby to the hospital. The paediatrician took one look at her and said what do you think is the matter with your daughter?. He made me say it out loud!. He made us say the words!. The hugest tears rolled silently down my face and wouldn't stop. Thoughts of all the older people with Down Syndrome I had ever seen came into my head. The thoughts that our whole life would never be the same again and what did I do wrong were whizzing through my mind. The paediatrician told us to take our baby home and enjoy just cuddling her and being a family.
That was 13 years ago. I now have a beautiful, sometimes stroppy, teenager just like everyone else. Which is exactly
what I feared I would never have. She attended mainstream primary school and is now in her second year at
mainstream secondary school. She has lots of friends and enjoys spending time on her bike and listening to very
loud music. She is particular about the clothes she wears and what music is on her MP3 player. She has already
decided what she wants to do at college and I know, because she shows me every day, that she will meet every
challenge head on and overcome it.
I recently found myself saying OUT LOUD, with an enormous smile, I never thought I would ever feel this way
about Down Syndrome, I am so happy and proud. My daughter is the reason for so many of my smiles
and so very few of my tears.
My son is now 12 years old & attends the local mainstream secondary school.
Before he was born, even though I'd had the triple test, I was assured that my child was in a low risk category for genetic problems. So I planned for the birth, which turned out not to be as expected. I had a bleed & was taken in to hospital for bed rest.
After a week & various scans the doctors decided to deliver the child a week before the due date by caesarean. I opted for a spinal block & so held my son as soon as he was born. About five minutes later they took him across to the baby station to check him out.
After my operation was completed I was wheeled into the recovery room & within 5 minutes a registrar came & told me that he was 99% certain that my child had DS & he was sure that a blood test would confirm the diagnosis.
I was stunned. Instead of my beautiful hoped for son here was a different, unexpected child & something was seriously wrong with him. The nursing staff gave us a quieter private room off the main ward & then a flurry of activity started with various tests & investigations into the effects of the diagnosis.
Looking back I don't really think I took on board all the implications of having a child with DS as they were all presented as being
so negative. The medical & developmental implications were listed for me & were just too much to bear so, as my son's heart was ok & there were no immediate medical issues to deal with, I decided that at this time all he needed was the same things as my daughters did at their birth. So the bond was there & I determined my son would have all the love & nurturing of any desired for child.
During the past 12 years there have been struggles & challenges, but as any parent would for their ordinary
child, I have & will continue to guide, encourage, seek resolutions & love my son through them & in return I am
privileged to be part of a world that has a slightly different perspective to the ordinary.
A sister's story:
I remember the day my dad picked me and my sisters up from school and he told me with tears in his eyes that the child my mother just gave birth to had Down syndrome. My first initial reaction was, what's her name (as they had yet to decide). Zoe my dad replied and we all started crying in the car.
I am now 26 and I speak to Zoe every day on the phone and see her at least twice a week. We dance to Girls Aloud and like any typical teen sister thing I do her hair and make up and I have the most amazing time with Zoe. My friends all always loved Zoe and all still ask after her now as she really does make an impact on your life
Anyone who has met Zoe has had the privilege to share her warm smile and great personality. My friend once asked me if they offered a drug to change Zoe would my parents use it? My whole family couldn't think of anything worse as she wouldn't be Zoe then would she?!
If you're reading this feeling sorry for Zoe, then please don't as she lives her life to her fullest potential and enjoys everything as that's her nature. If you feel sadness for my family thinking it must be hard work then don't, as it's completely the opposite and we feel so lucky to have such a special member of family. She has brought our family closer together than anyone could ever imagine - but then that's our Zoe, always surprising us!
Here are some favourite pieces of writing chosen by our families. Welcome to Holland is a well used favourite of many parents, as is the slightly less well known 'an extra chromasome for Fred'' - both were written by mothers of a child who has Down Syndrome.
"Normal Syndrome" is a very clever look at how people who have ordinary babies might be told about their baby's 'condition' if they were told in the same way that parents are told about Down Syndrome - stretching out all the possible future challenges that may await the parents of an 'Ordinary' child!!
Welcome_to_Holland.pdf
An_Extra_Chromosome_For_Fred.pdf
Normal_syndrome.pdf
