91Èȱ¬

What a moving and uplifting blog.

Fantastic reading, thanks for the honest, up-beat perspective of Your World!

I have registered here solely to comment on this blog post. I'm a father of two happy non-Down's children. I live in a country that considers Down's as something that should be eradicated nearly at all cost, with pregnant mothers actively encouraged to go for terminations if there's any risk of Down's at all. This has gone on for years, to the point where there is real pressure on them.

Your fantastic and very life-affirming story shows that there is another side to Down's. Yes, I'm sure you have left out a lot of heartbreak, but isn't life about focusing on the positives?

For lack of a better word, well done.

Thanks Steve for writing so positively about your son and experience of being a 'Downs dad'. I have a brother with a related syndrome and I wish our father had felt a fraction of the pride and joy you obviously feel for Stan and shown him the same love. You know you're doing a fantastic job and I salute you! :-) :-) Say hello to your cheeky man Stan and keep on dancing.

Great blog. There's lots of fun and joy being `Disability Dad'. My special son is 37 years old!

I too was a Downs Dad many moons ago. Sadly my daughter had a severe form of the heart complications that so often come with the condition and died during an operation to correct it. She was only 6 years old but they were years filled with love and fun and she touched the heart of everyone she met with her bright eyes, long blond hair and ready giggle. Having her was a blessing - it shaped my life and made me a much better person.

Nicely put. I can still remember the vivid shock of being told my 10 month daughter had cystic fibrosis: I thought the lives of all three of us were effectively over. I could not have been more wrong. Yes, life has its wrinkles, but she's a wonderful, serene (most of the time) girl who just happens to have CF and I would not change a thing about her.

Very inspiring! Thank you for sharing!

You are an inspiring family

Great story Steve. Thanks so much for sharing.

My son, Shahryar Niazi, we call him Sherri is 14 years old. When only afew weeks old, the Doctor sedated him for a minor procedure. His body became stiff and he remained like that for 2 days. By the age of two and a half he stared showing signs. By three, his vocabulary was reduced to one work "Baba" for me. When we went to collect him from his first day at school, the Principal said "In my 25 years of experience, I have not seen such a child. It would be a miracle if he could learn his ABCs. It wasn't a good day. We could not control him. He could not sleep. The diagnosis was autism. "The best thing you can do for my patient is to take him to Canada" was the psychiatrisit's advise. We immigrated. The Halton Regional Centre in Oakville Ontario Canada sent specialists. They worked with Sherri and us. The schools had teachers trained for special needs. Today Sherri has two books authored by him available on amazon.com and Kindle.
Special need kids need special attention. Give it and you get the love of life. Keep it up Steve.

what a lovely story, your discription of your feelings at the birth, ' juggernaut through my hopes' really sums it up! I am a screening lead midwife and always try to point out that these days, Downs children can lead active independent lives, and that it is not nearly as bad as people perseve. Sadly I think the 'pressure' that people feel that they need to undertake these screening tests is mainly down to ignorance of what is really involved, from midwives to women themselves. It is thought of as a 'routine' test' and people think it wont happen to them, and so do not seriously question whether or not they should be tested in the first place. I always say what is the worst that can happen? To loose a baby through diagnostic testing or to have a baby with downs syndrome? For some people screening is definatley a good thing, they understand the implications, but for the vast majority, they do not really think it through. Almost everyone who has an undiagnosed downs baby copes brilliantly, even if at first they cant! You cannot stop the love coming because Downs babies give it unconditionally forever.

Some people we look up to, your humble attitude to life shines through your blog. Being disabled is not easy, living alongside and caring for a disabled child is a dedication. But then I dont really think you see Stan as 'disabled', just different. And a joy to share life with. Thanks Steve. Take care.

Wow, what a truly inspiring story. Thank you for sharing

I have a beautiful 29 year old Down's daughter called Amy. As I always say "every home should have one!"

A very good point SeafoamGreen. Our society seems to consider the avoidance of this and similar conditions so important that it is happy with screening tests which sometimes present a greater risk to the unborn child than the probability of the condition itself being present. So we would rather kill a healthy child than have one born with Downs.

Hi Steve & Stanley & family

I too registered so I could post this. Probably from quite a selfish motivation in that I think I'm searching for some sort of reassurance. I'm an older Dad with gorgeous 8 month old, but I'm struggling, arguing too much with his mum and in front of him, lot of it has it's roots in my own insecurities. They are off out today and I've planned a day of watching sport for myself, nothing wrong with that, but I'm glad I stumbled on this article and read your blog - it is incredibly uplifting and a really good read, you write so well and so movingly Steve, hope I an retain the improved sense of perspective you've given me this morning...hope to see you and Stanley dueting at Glastonbury!

Our daughter, Victoria, was born 18 years ago with Downs and several other very serious complications. We were warned in advance to expect her to be still-born. A few moments after she was born alive, the doctor approached me, while my wife was being stitched up, and asked if I wanted resuscitation for her. "Will she live?". "No.... No, I don't think so". I picked her up and we had our first experience of being a family until she died in her mother's arms five hours later. It took me years to work out that I did the right thing for her that morning, even though I was partly motivated by the same horror of Down's, that Steve experienced. We now have 2 "normal" teenagers.

Hello, Steve and Stan. Whilst still servinmg in the RAF, I undertook many years of voluntary wrk in my then community of the Forres and Elgin area in Morayshire. I worked with many vulnerable groups of wonderful people including adults with special needs (I`m sorry to use this term, there are so many `lables`, this is the least offensive one). From that experience, I came to belive that, with the correct help and supoport, these wonderful people deserve the chancde to live equally in society and even hold down employment and live as indepedant a life as possible and many of the men and woman I workwed with were able to do so. Sadly, however, this does not seem to be the case at the moment, and it sadened me that many of these capable people faced a life on benefits or living with parents or carers. I am talking about individual assessments here as some people will need constant care, butr those who do not and have the ability to live a `normal` life, then that opportunity should be there. I feel we all have `learning disabilities` (Lieft school with no qualifications and am hopeless with maths for example and this limits my career choices). With regard to Downs, I know too that there are many forms of it that in tuen pose their individual challenges. However, as regard to who or what is `normal`, I don`t think there is a definitive answer for that other than we are complex people with our limitations and imperfections. We all deserve the same opportunites to exploit all potential and abilities we have irrespective of where the threshold is. In conclusion, we all should all take a look at Stan and realise, too, that life is meant for living amnd enjoying and for being happy! Here`s to you Stan, cheers! Garry Harriman.

Steve, I also hope that you have perfected that dance now and have the courage to do it solo without the hel[ and encouragment of Stan! You should now try the Macorina or the Ketchup song!

One of the longer blog posts I've read but read in full without procrastination, that shows great writing and readability. The post is inspiring and gives me hope that if I am in such a situation I'll be the same and have such support from others.

I am a dad to Carys who was diagnosed at 2 yrs with Rett Syndrome. Rett Syndrome means she cant talk, use her hands, walk unassisted or even sit up. Yet she is a sparkly amazing girl. It really is true when they say these things teach you so much about life and make you a better person. If I had the choice I would do it all again.

Nice one and as the Father of a beautiful 17 month year old wee girl who is also DS, I agree with everything you've written. The highs are higher, as my Wife and I have found so far, but it's the difference in my Daughter, which makes the difference.

And it is this difference we celebrate everyday as should every Parent of DS children. Keep up the good work...

Being a disability advocate in the U.S I wish the 91Èȱ¬ to please note. The is no ' in Downs. The correct name has always been Downs Syndrome. This is a common mistake like the incorrect use of your and you're.

A truly inspiration tale. Simply fantastic.

Dad of severely autistic boy. Got many campaign medals but this brought a tear to my eye.

Wow! I must say that you are a great Dad! I am not sure how many people could react so positively to something that challenging. Best Wishes to all of you!

Thank you for your honesty.... Please write more. This was a brilliant article.
As a society we have a shocking attitude towards Downs syndrome and disability. I have had friends who have been under pressure to terminate the pregnancy of their child, diagnosed in the womb with a chromosomal abnormality...who have not (terminated the pregnancy)...and then have been severely criticised by family and friends rather than encouraged and supported.
When the babies were born and introduced to those around attitudes changed. Meeting the child and getting to know them as a person resulted in an evaporation of negative feelings to be replaced by love and a sense of responsibility.

You and your family are a true blessing to society.

I read this with tears in my eyes. It was as if i was the author of this blog. My brother is a down's and he brings happiness and joy to us every day. Constantly laughing, smiling and just happy. Always reminding us that this life is too short to waste being stressed or sad. The reason i had tears in my eyes wasn't just because of this moving life journey with your son Stan but because of the similarities of events and the relationship between me and my Downs brother. He is 9 years of age and he too had two life threatening heart operations. Looking at the picture you uploaded here of him as a new born, instantly reminded me of the first time i met my brother surrounded by wires and hospital monitors etc.

I am looking forward to reading next weeks blog, i hope you could talk a little about Stan's progress, particularly his communication skills and what you have done to help him with this.

What a brilliant blog, inspirational and moving!

Thank you so much. The Eastenders storyline you contributed helped me rationalise the feelings I had as a first time Mum when I found my baby wasn't perfect and would need a lot of operations and support. I remember my Eureka moment too.

Great story and it rings so true with my own experience. You came to terms with it a lot quicker than I did (I'm ashamed to say) but everything you say is right. You love your own children and want a perfect family and then this big surprise hits you and, for me, it was almost like a bereavement with the loss of all hopes and dreams and the loss of the perfect baby my wife and I had just expected. Now, 6 years on, the only thing I wish I had known then is just how much I would love her.

Thank you so much for this story.
In a world that is increasingly hostile to children with Down's Syndrome, your words here are much appreciated.

I stumbled across this article today, which is particularly apt as it is my lovely nephew's 18th birthday today - he is also Down's. He is a joy to be around - so full of love and fun - and can get any party started, particularly if it means he gets to dance with girls! I smiled when I read the part about you dancing with Stan on New Year's Eve, it rang some bells. My nephew has taught me to get up and dance and enjoy yourself as though no-one is watching.

Sadly, I have recently lost a friend who was in her 60s, again with Down's. It has been a privilege to grow up around her and now to be able to see my nephew grow up. I believe that people with Down's can teach us so much - particularly to give love unconditionally. I can honestly, honestly say that my experiences with my friend and nephew have taken away any fear I might have about having a baby with Down's, it might take some getting used to and an adjustment of the hopes you have when you have a child, but without fear. Yes, it must be a challenge - as all parenting is - but I think that the love you get in return goes a long way to offset this.

I would hope that any parents who have a child with Down's are given help and support to realise what a really special little person they have been entrusted with and what fun and love lies in store for them. Blogs like this are a great way to show the positives and dispel fear and ignorance.

Steve, like other people this made me cry but for a very different reason.

I wish my son's father was like you. Our child has a learning disability (not Down's) and despite him now being almost 15 years old I know in my heart that his dad hasn't excepted this. He is still "grieving" for the child he lost, for the child he will never have. I am not painting myself as a saint . My son drives me up the wall usually at least once a day, but what teenager doesn't!
You have clearly embraced your son's differences and it's wonderful to hear how you have accepted it and view it so positively

Hi Steve.
This is very reassuring and nice to hear an honest and positive story in relation to the situation. I am 27 and have a 10 year old step son called Taz and a 2 year Daughter called Alex. They are both beautiful kids. Taz is hyper most of the time and Alex has Downs. The way you described finding out had some eerie memories from our experience. I think myself and my Partner expected to see a perfect little girl pop into the world, instead it was a cold, blunt and heartless nurse who began prodding and poking from day one. They ran tests, and for 6 weeks we were reassured that everything was fine and that they were sure the tests would come back negative. Then, on a week I was working away from home my partner called in undescribable fits of tears and agony saying a letter had been sent through saying that Alex had downs!

In the first trimester we thought there was a possibility as she had a fluid build up in the back of her neck, but then this was cleared and everything seemed fine. I struggled at the start also, but my demascus moment was about 4am, when alex had began drinking her (what felt like!) 50th feed of the night. It was peaceful, quiet, and she locked eyes with me, and we stared at each other, not separating for a second. The sun began to rise, she fell back asleep and from that day forward I knew that the Downs (or DS as we sometimes call it) would be a stumbling block but it didn't matter. At 2 years old she has had 3 major operations, sent approximately 2-3 months in hospital during her life and still has bowel issues.
HOWEVER
She has also:
- managed to make EVERYONE fall in love with her
- she has started toddling
- she's beginning to eat solid food
- she's starting to sleep through the night
- she is constantly babbling, and has about 10 words in her vocabulary
- she knows how to beat up her brother
- and most importantly when she holds my hand and walks around shops with me I'm the proudest dad in the world!

At 25 I wasn't even sure if I was ready for infantile fatherhood, but alex everyday reassures me that it's going ok by wanting kisses when she wakes up, wanting cuddles when she falls over, by drinking imaginary tea and laughing at my rubbish jokes!

She is my best friend (although officially its her mum or a few other adults!) ever spare minute I can grab with her I cherish. I wouldn't change alex for the world, and just like you mentioned, she is forever educating people about her condition by just being herself. She has made me closer to my family than I ever thought possible, she's been given allsorts of presents by perfect strangers and she's just beautiful! We moan about how life gets us down, and its ironic that a condition called "Downs" seems to be the very reason we feel "up" on a daily basis.

Thank you for your story, and I will continue to follow your blog.
James - Proud dad of Taz and Alex

15.
At 12:02 4th Feb 2012, ss wrote:

"screening tests which sometimes present a greater risk to the unborn child than the probability of the condition itself being present. So we would rather kill a healthy child than have one born with Downs."

No you are wrong. SS - ask yourself if you would *like* your child to be born with complicated but avoidable health issues. Ask yourself if your would *like* to see your child die and then *like* organising their funeral.

CVS and Amniocentesis both have a ~1% risk of affecting the pregnancy. All pregnancies have a ~1% risk of an unsuccessful outcome. CVS and FISH Karotyping will detect all Trisomy, Diploidy and other deletions.

Having lost our first child to a cardiac condition at 4 weeks due to a micro-deletion we were sure that all his future siblings come to into the world without this risk and the years of uncertainty - for them, not only us. I love my son who we lost and having been through these tests, his sister has arrived healthily. We feel the pain of not having been able to ensure that he was saved from his condition.
I admire Steve and some of the things he says about being run over by a train when hearing this kind of diagnosis is absolutely true as it happened to me.

My son Daniel is Autistic ............. and I love him to bits. For some reason he's inherited my love of cycling and doing that has brought us so very close. He's now racing on his own in the paracycling series (finished 4th in the National Road Championships last year). He's also a keen swimmer with silver national learning disability championship medals. Do you detect a hint of fatherly pride?

He's now based at Foxes Academy in Minehead (featured in a little thing they did on 91Èȱ¬ Spotlight that was screened yesterday) and is working hard to live as normal a life as possible.

I didn't/don't have a support network. The people who have done most for Daniel are his Mum and his sister. We have had to fight hard for everything that Daniel has needed and, watching him continue to grow and develop despite his disability is amazing. As the main article says, perspectives change tremendously. I don't need anything more in life other than to watch him grow as a person and to be able to live a fulfilling and rewarding life.

Thank you so much for this story I am glad about your family.

That's so wonderful thank you for sharing

I find this an uplifting article but am still disappointed every time by the 91Èȱ¬ by its use of the word Down's. Especially as the its the 91Èȱ¬. My son is five and has Down Syndrome. I find it so offensive when people say he is a Down's. No he's not! He's my son, a human being who has a condition called Down Syndrome. It doesn't make him who he is.
He also has a condition called West Syndrome not West's Syndrome. It was found by a doctor called William West. Down Syndrome was found by John Langdon Down. Where does the 's' come from in Down's Syndrome?
Please stop using this derogatory term which puts our children into a pigeon hole for people to define them all by because if I have one more person tell me how 'loving THEY all are' I will scream!!!!

Thanks JojoD31! I too HATE it when people describe my feisty, clever, stroppy, funny 9 yr old daughter as 'A Down's'!!! Makes her sound like a breed of dog..."What's yours?" "Oh, it's a Down's..."

My daughter is all of the above, and she has Down Syndrome. I also HATE it when the media and health care professionals pedal the same tired cliches surrounding people with Down Syndrome. If I had a penny for every time I've been told that people with Down Syndrome are always so happy and loving. People with DS have the same range of emotions as anyone else, and exercise that range of emotions just like anyone else. I had to laugh the last time someone told me that 'Down's kids are always so happy' as it occurred in a shop at a time when my daughter was growling aggressively and pinching her older brother for no particular reason!

Enough of the cliches, let's get on with the business of recognising that Down Syndrome is often no more than a learning delay with a few health complications thrown in, and that 'normal' kids like my eldest son can end up attending more hospital appointments than those with a disability due to sports injuries, developmental delays/complications, eye/teeth problems. My point is that with children there are no guarantees, but it doesn't matter, they're your kids and you love them, support them and guide them as best you can.

I guess all we need is a little perspective, fewer assumptions, a better educated media (just read a Mirror article about Eva Longoria's sister with the headline 'My Down's Sis is So Special'...aaarrrggghhhh) and more positive role models like Stan and his Dad.

Thanks Steve.

Good post. My boy has DS, he is 17. He attends college, has a p/t paid job, uses local buses independently, skis well on blue and green runs, and trains at our local boxing gym every week without any support. You have all this, and more to come... its a great journey.

This was a compelling story. I enjoyed that you have been through 10 years of Stan’s and celebrating his life and yours instead of dwelling on struggles through life. He has made some big accomplishments in life and probably will continue to do so. I wish for the best and to keep enjoying Stan and his many gifts he has to offer.

Thank you for being so honest with yourself and taking us on your journey This really is a heart warming story and gives an idea of what it takes to be a real father.