Mummy Bugg: At first sight...

Saturday, December 26, 2009

At first sight...

I was up early this morning... haha well, yes, I am up early every morning! by choice. I watched this movie on Foxtel called At First Sight. It was about a blind guy, who got his sight back via an operation, and was based on a true story. I couldn't help but draw parallels to the thought of Andy not having DS. I missed the first 20 minutes or so of the movie, so not sure how the story started out. But basically he had a girlfriend, she was with him when he went for the surgery that would possibly restore his sight. It did.

His reaction to becoming a sighted person left me with soooooo many thoughts! He couldn't cope. He was a 25 year old man, and had been blind since birth. He had no perception of facial expressions or emotion. He couldn't read. He walked into mirrors. He experienced jealousy (cos he could see it) He went to a party and everyone started dancing Y.M.C.A. ... he couldn't do it, cos of course he had never seen it before. Looking at tall buildings gave him vertigo. He still needed to touch food to realise what it was. He was served up a crayfish, and was astounded that people actually ate something that looked like that.

Then there was his partner... Her original expectations became obvious as the story went on. She obviously thought that gaining sight would improve his quality of life. That the fact he was blind meant he was missing out on so much. Of course she had no idea of the hurdles he would encounter transferring from being blind to being sighted. She couldn't cope either... with the fact that gaining sight didn't automatically turn him into a sighted person! He could "see" but he also coudn't "see" He really didn't know how to use his sight.

And then my mind started ticking over... I have had the discussion, and read a few discussions on whether I would take the DS out of Andy if I could. I have always said no, I wouldn't, because Andy is who he is, and we love him just as he is. Although, I will concede that that doesn't mean the thought hasn't crossed my mind as to whether he would have a better life if he didn't have DS. I watched the whole movie, with DS in my mind, and how many of us must think about the quality of life that our kids have, and whether their lives would be enhanced if they didn't have DS. And at the conclusion of the movie, I am at peace in my mind that Andy is Andy, and taking away the DS would quite possibly, as it did for this man, make his life so complicated that we would wish he had it back!

What would life be like for Andy if he didn't have DS? Would it automatically make him a super sports star? Would he stop having anger management issues ( haha that is a slight exaggeration, but I like the term...) would he be "smart" ? His 18 year old sister still has trouble reading a clock, so would taking away his DS mean that he would be able to tell the time? Would society think any different of him? He would still look the same... How would his personality change? Would he actually WANT to learn all the stuff that his intellect had previously prohibited him from learning? The quesitons are endless really.

In the end, the mans eye disease returned, only 5 weeks after he became sighted. It was like he was releived that it was happening. He had quality of life. He was happy. It was the society around him that thought that having sight would make him a happier person.

Oh, and then there was his mum, who had been his primary carer. When he woke up from surgery, sighted, he no longer needed her. He no longer needed the safe haven that had been his home forever, cos of course he could see now, so he could live anywhere. He moved in with his girlfriend. His mother was devastated. She went overnight from having a son who needed her assistance on a daily basis, to him not really needing her at all! And I could see myself in her! Imagine waking up tomorrow and not needing to do anything for Andy, ever again!!! Whilst that is a scenario that I sometimes crave, the reality would be, that it would knock you for six!

Food for thought hey...

3 comments:

Shelley said...: That sounds like an interesting movie - yes I sometimes think about changing Han's DS - I still would like to change the things that are so hard for her - but then again that is part of it all too isn't it? And her determination and good cheer in the face of it all... welcome back to bloggy land!; December 27, 2009 at 12:35 PM
Narelle said...: Thanks Shelly :P Yeah I get what your saying, there are certainly aspects of Andys life that I would like to change too. Hmmm; December 27, 2009 at 3:04 PM
Dory said...: It's something that's certainly crossed my mind as well, but would never do if I could.

BTW, you have inspired me to get back to blogging :); December 31, 2009 at 8:03 PM

Post a Comment

The birth of Andy

Hi, I’m Narelle, wife to Paul and mum to three beautiful children, Cleo (15), Lachie (14) and Andy (11). Eleven years ago I gave birth to my third child. It was a boy - That was no surprise as I had found out the sex at the ultrasound. However learning that my baby boy had Down Syndrome, now that was a big surprise!
It was about four o’clock in the afternoon; Cleo and Lachie were sitting on my bed, eating BBQ shapes and watching Playschool. I was 37 weeks pregnant and had been to my obstetrician that morning to have a cervical suture removed. This was a procedure I’d had done with my last three pregnancies, after a late miscarriage prior to Cleo’s birth. I had this feeling that the baby was very low and warned my husband that if he indeed went on his work trip that day, our son would arrive. As they do, my husband thought he knew better, and off he went.
Around 4.15pm I was having reasonably strong contractions. By 5.45 pm my mum suggested perhaps we should be going to hospital! I packed the kids off to a neighbour’s house and was on my way. As I walked in the door of the hospital, I doubled up in pain over a couch in the entrance. I was put in a wheelchair and off to the delivery suite we went. Ten minutes later Andy was born! I was laughing; it had all happened so fast. Our little boy cried as they wrapped him up. Mum was in a spin; she had never attended a birth before! And as I had told my husband would happen, he had missed it all. The obstetrician had devastating news
The next three days I went along my merry way. Andy was not really into breast feeding, preferring to lick rather than suck, and he was rather sleepy. My mother informed me that I too had been very sleepy and that this was common for babies born three weeks early. I trusted her words.
A girlfriend came in to visit, and we were again laughing, “You didn’t sleep with the Chinese chef did you?” she commented “His eyes look really Chinese when he opens them” Day four came and I was looking forward to going home with my baby. I was also worried that he was not feeding properly. Around lunchtime I was again attempting to feed him. Paul had taken Cleo and Lachie to Ballarat to work with him for the day (about 1.5 hours from home)
The obstetrician arrived to visit me. “We think there a few problems with your baby - he doesn’t seem to be feeding very well does he?” she said. “Actually we think he has Down syndrome” My heart started beating a million miles an hour. (Strangely enough, as I am typing this it is happening now too!) A million thoughts were running through my head ‘I am only 29! Look at him - he is perfect! What would you know, stupid woman, and I don’t like you anyway. How the hell would you know if he had Down syndrome, and anyway that only happens to old mums. You are so wrong, and I shall prove it’ And then she went on to say, “Would you like to call your husband? Hold my hand and have a good cry” Of course I burst into tears, but no way was I touching her! How the hell was I going to call my husband and say “Oh by the way dear, they think Andy has Down syndrome”?
“You know you don’t have to keep him”
A couple of hours later, a paediatrician came to visit. He was pinching Andy’s skin, (I later discovered this was checking for dehydration), looking at his feet, poking at his eyes. “Mmmm hmmm, 99% sure he does have Down Syndrome, but we shall test to be sure” he said.Again I was thinking, “No way, look at him! You are so wrong!” Of course he was actually spot on. The next couple of days were filled with tears, and mixed emotions. How was I going to cope? And what had I done to my perfect little family? Why oh why didn’t I just stop at two!
My only recollection of a person with Down syndrome was a girl who worked in the sheltered workshop that my uncle had managed a few years back. She was obese, could not talk, and spent her day sleeping at the table. My other thought was that people with Down syndrome die when they are about 15. I don’t even know why I thought that, but I did. So was I going to waste 15 years caring for a sick child, only to have them die! My dad came in to visit soon after the diagnosis. He said, “You know you don’t have to keep him - people will adopt him and he will have a good life.” Those words still send a shiver up my spine.
A weekend paediatrician also came into visit me. His words have stuck with me forever. He said with a smile “So, baby has Down syndrome, bit of bad luck there - But you know what? - A whole new world is about to open up to you and you will meet many wonderful people because of this” His words couldn’t have been truer.Andy was a delightful baby On day ten we took our precious little man home. We had received the all clear for any heart problems - 50% of babies with Down syndrome have some form of heart problems. In the first few weeks I did spend lots of time going through the “Why me’s” I was also waiting for things to be difficult; wasn’t this supposed to be really hard? Isn’t Andy supposed to be sick? Aren’t I supposed to be run off my feet with appointments?” A physio from early intervention came to visit me. She offered me a photo album of all the babies she had worked with. I promptly told her what she could do with her album. I had my own son and I didn’t need to see photos of ‘more of them.’ I have laughed about that since.
She was a lovely lady, and when she left I did in fact look at the photos; and I was quite amazed at these beautiful kids. They all looked fantastic! Far from the images I had in my head. There were photos at gym classes, school photos, and some happy family snaps.
The first year of Andy’s life, he did get quite a few chest infections. On one occasion he ended up in hospital overnight. But he was a delightful baby. As I did with Cleo and Lachie, I spent lots of time playing with Andy. And much to my surprise he reached his milestones with incredible ease! He could roll over at 3 months, learnt to sit around 9 months, was crawling around 11 months and walked at 18 months. Not bad I say! Feeding was easy for us. I know some families who have had difficulties with solids, but for us Andy cruised through it all. Sleep wise he was a dream! And Andy was the cutest baby ever! His smile lit up his whole face. Every achievement Andy made was so special, and slowly but surely I began to realise that he was going to achieve great things. All the negative information I was given when he was born was starting to sound all wrong.
Thriving in the school environment Every day Andy would teach us something new. The joy he was bringing to our family was amazing. Andy was charming everyone he met, and he still does! My family and friends were extremely supportive. My one dear friend, Sam, spent hours at my place, as I did hers; always being there to listen or comment on every aspect of Andy’s life. We have shared lots of laughs and tears. I loved that she treated him like the other kids, and she was one of the few people I trusted to baby-sit him. Fast forward a little, and we were ready to start Andy’s education. I enrolled him at the same kinder Cleo and Lachie had been to. The kinder teacher was fantastic and we worked together to settle Andy into the routines. Again he was treated like everyone else and was thriving in the new environment. I recall going to pick him up one day and being greeted with a strange smile. “Andy has had a bit of a dip today” said the teacher. He had climbed into the water play tray when he knew no one was watching and was happily splashing in there! There were many laughs to come, Andy can be very entertaining and has the ability to work a crowd.
We also chose to send Andy to a mainstream school for his education. Again, we enrolled him at the same primary school where Cleo and Lachie were attending.
He is this year going into grade six. I am trying to think of a way to absorb the tears I will shed at his graduation ceremony at the end of this year. Our journey through school has been an interesting one! Andy has the help of an integration aide in the classroom for most of his day. The first couple of years were a little tricky as Andy had little intelligible language and he also used to run away! After he managed to leave the school grounds for around 20 minutes, the school took my concerns seriously and applied for funding to get safety gates. These days he rarely tries to escape! A star of the school play each year
While the school experience as a whole has been wonderful, it has not always been easy. But most of the teachers have been fantastic, only one gave us a bit of a hard time. Andy has learnt so much. He can read and write, loves drama, plays in a school basketball team, has been on school camp, and he is always a star at the school concert. Every year I am amazed at what he achieves. I often find myself racing to the car to burst into tears after something wonderful has happened. The reaction from the children towards Andy has been a real eye opener! I believe that having Andy in their class has made every one of them a better person. It is wonderful to watch them helping him. At least once a week someone will stop me after school to tell me about something Andy has done. Children will tell me, “Andy was so good at drama today, he’s a really good actor” or “I never knew Andy would be able to read, he read us a whole book in class today”
As a family we keep Andy involved in all aspects of our lives. He has been going snow skiing since he was three, he loves to go to the AFL games with Paul and Lachie, he rides a bike, loves playing the play station, and is obsessed with wrestling. He also loves to get breakfast for anyone who’ll take it (even if you don’t want cereal and juice, you will get it! And you will eat it!) Friends with AFL players and wrestling champions
Cleo and Lachie adore him. As with any siblings, the boys do fight. They love a wrestle and we have all the normal problems of “He hit me/I did not/You started it…” They too have gained so much from having Andy in their lives. Their friends accept Andy - there is the odd one who hasn’t and fortunately my kids are smart enough to know that they are not worth having as friends. I love hearing him muck around with Lachie’s mates, especially when they don’t pamper him and expect him to behave like any other kid.
Having Down syndrome comes with some bonuses too. Andy loves the AFL and when he goes to player functions, they always spend extra time with him; taking photos and chatting, I keep telling Cleo she should go with him! Last year Andy and Lachie also got to meet one of their heroes - John Cena. John Cena is a wrestling champion from America - he was out here on a promotional tour and the boys got taken out the back to meet him and get photos! I’m not sure who was more excited - them or Paul!
People who have Down syndrome can have such fulfilling lives, just like anybody else can. I am confident that Andy will eventually be able to live independently. He is now also learning lots of life skills. Dispelling the myths I hope that my story will help dispel some of the myths that people have about children with Down syndrome. There is so much testing done with pregnancies these days, and I wish that when a prospective parent receives news that their baby may have Down syndrome, that they were told some of the good things. I must concede, not all families are as lucky as us, and some babies with Down syndrome will have poor health for a period of their lives. But most babies with Down syndrome are healthy! Ask any one of the parents I know with a child who has Down syndrome and we all say the same thing. We wouldn’t change our children for the world!
Andy has taught us so much - patience, understanding, the ability to go with the flow, not to worry about things that really don’t matter. Before having Andy I was completely naïve about Down syndrome. All I could tell you was ‘The statistics show that after you are 35 you might have a child with Down Syndrome, and you don’t want that to happen!’
Ask me now and I will tell you… having a child with Down syndrome is so much better than I could ever have expected. He has changed our lives forever. It’s wonderful, he’s wonderful! I also feel privileged that Andy has given me the opportunity to meet so many other beautiful children who also have Down syndrome, and their wonderful families too. An EB weekend in Bright
In November last year we actually organised a weekend in Bright with the wonderful ladies I have met on Essential Baby. I would never have come across them had it not been for Andy. Six of us families chatted our way through the weekend, sharing many stories and lots of laughs! It was definitely the highlight of my year. So please, next time you come across someone with Down syndrome, don’t take pity. Give them a smile, and rest assured that they have quality of life. Their biggest hurdle in life is not their disability; it is dealing with a society that unfortunately is not as inclusive as it could be.

Mummy Bugg

Saturday, December 26, 2009

At first sight...

3 comments:

My often visited sites

Blog Archive

About Me

The birth of Andy