When you are growing up you have several ideas of how your life will be when you are older. What job you will have; what age you will get married; how many children you will have. For me, I always thought 2 children would be nice. A nice even number. A family of 4. When L came along, I couldn't believe how much hard work a baby actually was. There really was no let up! The sleep deprivation was awful. Most of the time I could actually fall asleep standing up then whenever I actually got the chance to sleep I just could never seem to nod off. I struggled to switch off from L and was forever checking him during the night to make sure he was ok. I remember one night being woken up by the alarm which was connected to L's baby monitor - a monitor that picked up every movement including a heartbeat and sounded an alarm if there was no movement for a period of time. I've never moved so fast as I flew into L's bedroom terrified of what I might find. There he was, tucked up in the very top corner of his cot - too far away from the monitor for it to pick up any motion. I aged ten years that night and the monitors got packed away after that.
When I realised L had autism, it made me question whether or not to have another baby. Life just wasn't simple anymore and we had so many things to consider when it came to expanding our family. If you have a child with autism, any siblings have up to an 18% chance of also being born with the condition. That really scared me and I just didn't know if I could go through it all again. I felt in my mind that L was here, he was my priority and I should dedicate all of my time to him - another child would take me away from him to a degree and he needed me. And if another child was on the spectrum then that would leave me even less time to spend with L. I couldn't do that to him. I also worried if another child was more 'typically developing' how would they feel growing up with a brother with autism? A black and white decision of will we or won't we was suddenly full of doubt and worry. But my gut feeling was I had to focus on L so my mind was made up. L would be an only child and I would devote all of my time to him, raising him to the best of my ability so he could grow into the finest young man possible.
I was happy with my decision and when people asked the inevitable question of whether there would be any more children, I said I didn't think so and left it at that. But over time something just didn't feel right. My family felt incomplete. I remember looking at a holiday picture of the 3 of us and thinking that something or someone was missing. The thought of never carrying another baby or holding my newborn in my arms again made my heart ache and I started to feel really sad about it. My main worry was having two children with autism. I was handling one but could I handle 2?
Then one day, while watching L playing in our back garden I had this light bulb moment. A sibling wouldn't take anything away from L - it would do the complete opposite. A sibling would enhance his life. He needed a sibling. A live-in playmate for him. Someone bonded by blood who would always be in his corner. And if that child had autism? So what. I was already in Holland with one child, so would it be so bad if it was with 2? The more the merrier. I talked it over with S and he agreed. He said one of the nicest things I've ever head him say - that he didn't care if anymore children had autism because L was awesome just as he was. So it was decided. We would have another baby and in May this year little R joined the family. A little sister for L. I'm delighted that I had a change of heart and having R was one of the best decisions I've ever made. She is amazing and fits right in to all of our lives. Finally, our family is complete.
Wednesday 27 November 2013
Wednesday 20 November 2013
What is autism?
Before autism entered our lives, it's probably fair for me to say my knowledge on the subject spanned as far as the 1980's film Rain Man. Having never encountered it personally, I never had the need or want to know too much about it. Watching Dustin Hoffman memorise a phone book and make Tom Cruise very rich by counting cards in a casino is about all I could say on the topic of asd. But when the realisation set in that L probably had autism, I did what any half decent parent would do - I educated myself as much as I could on the subject. I wanted to become an expert on autism, to know it inside and out to the point I could win an episode of Mastermind hands down. So where do you start when you want to find information on something? Of course the internet was the first port of call. Good old google took me to many sites which made for very upsetting reading. As if my stomach didn't churn with anxiety enough, reading some of the things I did was almost enough to make me climb under my duvet and not get back out. So I went down the book route - and many titles now fill my home - Engaging Autism, Autism and Diet Intervention, Ten things every child with Autism wishes you knew, The Reason I Jump, Early intervention games for children with autism..........you get the picture. Knowledge is power as they say and I wanted to be extremely powerful.
So I soon learned that autism is basically a social communication disorder which is defined by 3 separate impairments (in asd lingo it's known as the triad of impairments). The first impairment centres around speech and language which can typically be a speech delay and problems with both expressive and receptive language. (In layman terms, expressive language is speech and receptive language is what you can understand). As a rule of thumb, people tend to understand a lot more than they can actually say. For me it's a bit like the offside rule. I understand it perfectly in my head but don't try and ask me to actually put it into words. I wouldn't really know where to start. For children with autism the opposite is normally true, they can say a lot more than they actually understand. They can memorise and recite whole songs and films but would struggle to have any form of conversation. They often use echolalia, which means when you speak to them, instead of answering appropriately they simply repeat back what you have said. L still does this sometimes. People with autism take things literally so saying something like "my feet are killing me" may actually terrify them. Of course it's a figure of speech and simply means you have sore feet - not that your feet are actually going to cause your death. Things like sarcasm are lost on them also. So the rule here is if you are speaking to a person with autism say what you mean.
The second impairment involves social and emotional interaction. A child with autism can struggle to interact with their peers and may prefer to be alone. They may be happy to play alongside other children but don't try to actually play with them or make friends. They may be too over friendly with people or can be the opposite and appear very aloof. They can't read body language or understand the 'social rules'. It is often said that children with autism are in a world of their own due to these difficulties.
The third impairment is about imagination and flexibility. A child with autism will have no or very little imaginative play. They may not pretend to talk on a toy phone or play with a tea set or toy kitchen as a typical child would. They like structure and routine and don't like change. I remember one day a few months ago, L and I had been out and were returning home. We live in a new build estate which still has building work going on and on this particular day the entrance to our street was blocked by a huge dumper truck. We had to drive around it and get to our house by a slightly different route. L had been in a lovely mood and we were chatting in the car but the second I drove around that dumper, it all changed. He started screaming "go that way, go that way" over and over. He was hysterical and had a melt down which lasted over an hour. In the end, S had to take him out and drive back in the street the 'right' way. Something which should have been nothing more than a tiny inconvenience turned our whole day upside down and left me a bit shaken up. That is autism for you. Just when sometimes you almost forget it's there, it rears it's ugly head to remind you.
On the plus side, I can't wait to take L to the casino when he is older.
Kidding!!!!!
So I soon learned that autism is basically a social communication disorder which is defined by 3 separate impairments (in asd lingo it's known as the triad of impairments). The first impairment centres around speech and language which can typically be a speech delay and problems with both expressive and receptive language. (In layman terms, expressive language is speech and receptive language is what you can understand). As a rule of thumb, people tend to understand a lot more than they can actually say. For me it's a bit like the offside rule. I understand it perfectly in my head but don't try and ask me to actually put it into words. I wouldn't really know where to start. For children with autism the opposite is normally true, they can say a lot more than they actually understand. They can memorise and recite whole songs and films but would struggle to have any form of conversation. They often use echolalia, which means when you speak to them, instead of answering appropriately they simply repeat back what you have said. L still does this sometimes. People with autism take things literally so saying something like "my feet are killing me" may actually terrify them. Of course it's a figure of speech and simply means you have sore feet - not that your feet are actually going to cause your death. Things like sarcasm are lost on them also. So the rule here is if you are speaking to a person with autism say what you mean.
The second impairment involves social and emotional interaction. A child with autism can struggle to interact with their peers and may prefer to be alone. They may be happy to play alongside other children but don't try to actually play with them or make friends. They may be too over friendly with people or can be the opposite and appear very aloof. They can't read body language or understand the 'social rules'. It is often said that children with autism are in a world of their own due to these difficulties.
The third impairment is about imagination and flexibility. A child with autism will have no or very little imaginative play. They may not pretend to talk on a toy phone or play with a tea set or toy kitchen as a typical child would. They like structure and routine and don't like change. I remember one day a few months ago, L and I had been out and were returning home. We live in a new build estate which still has building work going on and on this particular day the entrance to our street was blocked by a huge dumper truck. We had to drive around it and get to our house by a slightly different route. L had been in a lovely mood and we were chatting in the car but the second I drove around that dumper, it all changed. He started screaming "go that way, go that way" over and over. He was hysterical and had a melt down which lasted over an hour. In the end, S had to take him out and drive back in the street the 'right' way. Something which should have been nothing more than a tiny inconvenience turned our whole day upside down and left me a bit shaken up. That is autism for you. Just when sometimes you almost forget it's there, it rears it's ugly head to remind you.
On the plus side, I can't wait to take L to the casino when he is older.
Kidding!!!!!
Friday 15 November 2013
Welcome to Holland
I touched on the previous post about Welcome to Holland - a popular analogy in the special needs community. When I first read it, I cried my eyes out. I didn't like it. Who wants to go to Holland? No one would chose to go there but when you are taken there unexpectedly, there isn't much you can do about it. People have said to me in the past that they couldn't cope in my situation or they couldn't do it. I say of course you could, there is no choice. It's not like buying a new car and it breaking down. I can't take L back to a garage and say "sorry, there is a problem with this one". He isn't a piece of faulty merchandise that I can return and get a new shiny one in his place. Not that I would want to of course, even if I could. Having additional needs doesn't make me love him any less. It does the complete opposite. I love him even more. I just want to run away with him sometimes. Wrap him in cotton wool and protect him from society and its prejudice and ignorance. His autism is part of him and he wouldn't be who he is without it. A lovely mummy who I met on our journey said once that she wanted to run away and sell coconuts on a beach somewhere. Doesn't sound like a bad idea sometimes. I still sometimes cry when I read Welcome to Holland. It describes what it's like to be mum to a special little person more beautifully than I ever could. It touches me every time I read it. I used to sometimes look at L and wonder what he would be like if he didn't have autism but I don't let my mind wander there anymore. It's painful and pointless and besides, what's so good about Italy anyway?
Here it is:
Welcome to Holland by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Wednesday 13 November 2013
The Beginning
"We are diagnosing him, but I think you were expecting it"
I nodded and smiled at the speech therapist as she looked back at us with a sympathetic look on her face. Ten minutes later we left, with a few leaflets in hand about "what to expect after diagnosis".
Let's rewind...
When I was pregnant with L, I had a niggle that something wasn't going to be quite right. I put it down to me being a first time mum and just having typical worries. As the pregnancy progressed my feelings got stronger and I was sure something was going to be wrong when he was born. One morning whilst watching breakfast tv, I saw on the screen a teenage girl who had given birth to a baby with Down Syndrome. She had no idea and had dismissed her 1 in however many chance as most of us do. But as she said that morning "someone is always the one" and in this case it was her. I convinced myself that I would indeed be that one, that my baby would also be born with Down Syndrome. I wondered how my husband and family would react when our baby was born with the condition. He wasn't of course, but it didn't stop me checking him over after his birth - just in case the midwife had missed it. I checked the palm of his hands for a single crease, having googled the signs previously. My baby appeared to be healthy, but I still had this niggle. I didn't tell anyone about these fears and how I was feeling. I could almost picture the looks on peoples faces if I had to say these things out loud, they would surely think I was mad. Again, I just put it down to being a first time mum and that these were worries and fears most mums would have. We left the hospital the following day and I decided to put my fears to one side and enjoy my baby. He was here and he was healthy.
The months passed by quickly in a whirlwind of dirty nappies and sleepless nights. L wasn't much of a sleeper but I suppose most babies aren't. I remember speaking to a friend when L was 5 months old and her saying "he must surely be sleeping at night by now" and me fibbing and saying yes he was because I was too scared to say he wasn't as if it meant I was failing as a parent. My niggles were still there but I knew in time I would see all was well as I watched my baby boy grow and develop. We lived in a flat at this time and were beginning to look ahead and take steps to move to a house. We started talking about what areas we would like to live in, where were the good schools? The niggles continued "L might not go to mainstream school" I told myself. Why did I keep thinking this way?
Around the time of his first birthday, the niggles got stronger. But this time they weren't just niggles, there were signs something wasn't right. Little subtleties that anyone else would miss, but I saw them. I asked myself if I was looking for things that weren't there. He seemed fine a lot of the time but when he was next to other children his own age I could see differences. Of course everyone will tell you not to compare children, that they are all different but there comes a point when the differences become palpable and you can't deny them any longer. I spoke to L's dad (S) about it but he didn't agree so I turned to google and started to search, trying to find out if the gut feeling I had from even before L was even born was right.
My stomach turned over as I kept coming back to the same thing. The same word kept appearing over and over. I felt physically sick as I read screen after screen describing my little boy. It couldn't be right. I wouldn't believe it. I went to bed and cried myself to sleep. I knew it was true, finally it all made sense, but it was too horrendous to face.
L had autism.
I felt like my life had changed in an instant. I was propelled into a parallel universe where everything appeared to be the same, except it wasn't and it would never be the same again. I desperately wanted to go back to before, to find the door back to my old world, where everything was nice and rosy and special needs children were born to other people. But I couldn't find the door anywhere. It was gone. I was stuck here now, in this new world. In this new life.
The days and weeks that followed were a bit of a blur. I spent hours and hours online, spending every night into the early hours of the morning looking for more information. I went between knowing L had autism to convincing myself he didn't - he was too young, he was just immature, he would get there eventually (wherever 'there' is). I would often cry myself to sleep after reading stories of children locked in their own worlds, who never learn to talk, and who have violent outbursts towards their parents. I would wake in the morning and have those few seconds of bliss where I was unaware then the realisation would hit that it wasn't a nightmare. It was real. I spent many hours on special needs forums, asking other mums if my son had this condition. I was often sent links to a poem called "Welcome to Holland" - an analogy which compares having a healthy child to a fabulous trip to Italy and having a special needs child - where your journey takes an unexpected turn and you end up in Holland. I hated Holland. I didn't want to be there. I wanted to be on the beach in Italy, building sand castles and eating my body weight in gorgeous Italian ice cream. That's where I should be. That's where I was supposed to be. S refused to talk about it, he didn't believe it so I spoke to my mum often about it - she was the only other person who saw what I saw and she probably stopped me from going mad back then.
Many, many appointments ensued. Paediatricians, speech therapists, support workers, all working with L and giving their ten pence worth. And finally, at the ripe old age of 4, L was diagnosed with autism spectrum disorder. The last 3 years have been emotional to say the least. It's been a long journey and there have been many tears - and I'm sure I will shed many more along the way. But things are different now. The sadness and anxiety from 3 years ago has lifted. My beautiful baby has grown into a beautiful boy who is smart, funny and a joy to be around. Autism is just a little part of him and it's a part of all of us. I'm not the same person I was when he was born. Motherhood changes you anyway, and being a mummy to a special little person changes you even more. L is teaching me more about life than I could ever teach him and I appreciate so much now - I'm learning what life is all about and it's all thanks to him and a little thing called autism.
I nodded and smiled at the speech therapist as she looked back at us with a sympathetic look on her face. Ten minutes later we left, with a few leaflets in hand about "what to expect after diagnosis".
Let's rewind...
When I was pregnant with L, I had a niggle that something wasn't going to be quite right. I put it down to me being a first time mum and just having typical worries. As the pregnancy progressed my feelings got stronger and I was sure something was going to be wrong when he was born. One morning whilst watching breakfast tv, I saw on the screen a teenage girl who had given birth to a baby with Down Syndrome. She had no idea and had dismissed her 1 in however many chance as most of us do. But as she said that morning "someone is always the one" and in this case it was her. I convinced myself that I would indeed be that one, that my baby would also be born with Down Syndrome. I wondered how my husband and family would react when our baby was born with the condition. He wasn't of course, but it didn't stop me checking him over after his birth - just in case the midwife had missed it. I checked the palm of his hands for a single crease, having googled the signs previously. My baby appeared to be healthy, but I still had this niggle. I didn't tell anyone about these fears and how I was feeling. I could almost picture the looks on peoples faces if I had to say these things out loud, they would surely think I was mad. Again, I just put it down to being a first time mum and that these were worries and fears most mums would have. We left the hospital the following day and I decided to put my fears to one side and enjoy my baby. He was here and he was healthy.
The months passed by quickly in a whirlwind of dirty nappies and sleepless nights. L wasn't much of a sleeper but I suppose most babies aren't. I remember speaking to a friend when L was 5 months old and her saying "he must surely be sleeping at night by now" and me fibbing and saying yes he was because I was too scared to say he wasn't as if it meant I was failing as a parent. My niggles were still there but I knew in time I would see all was well as I watched my baby boy grow and develop. We lived in a flat at this time and were beginning to look ahead and take steps to move to a house. We started talking about what areas we would like to live in, where were the good schools? The niggles continued "L might not go to mainstream school" I told myself. Why did I keep thinking this way?
Around the time of his first birthday, the niggles got stronger. But this time they weren't just niggles, there were signs something wasn't right. Little subtleties that anyone else would miss, but I saw them. I asked myself if I was looking for things that weren't there. He seemed fine a lot of the time but when he was next to other children his own age I could see differences. Of course everyone will tell you not to compare children, that they are all different but there comes a point when the differences become palpable and you can't deny them any longer. I spoke to L's dad (S) about it but he didn't agree so I turned to google and started to search, trying to find out if the gut feeling I had from even before L was even born was right.
My stomach turned over as I kept coming back to the same thing. The same word kept appearing over and over. I felt physically sick as I read screen after screen describing my little boy. It couldn't be right. I wouldn't believe it. I went to bed and cried myself to sleep. I knew it was true, finally it all made sense, but it was too horrendous to face.
L had autism.
I felt like my life had changed in an instant. I was propelled into a parallel universe where everything appeared to be the same, except it wasn't and it would never be the same again. I desperately wanted to go back to before, to find the door back to my old world, where everything was nice and rosy and special needs children were born to other people. But I couldn't find the door anywhere. It was gone. I was stuck here now, in this new world. In this new life.
The days and weeks that followed were a bit of a blur. I spent hours and hours online, spending every night into the early hours of the morning looking for more information. I went between knowing L had autism to convincing myself he didn't - he was too young, he was just immature, he would get there eventually (wherever 'there' is). I would often cry myself to sleep after reading stories of children locked in their own worlds, who never learn to talk, and who have violent outbursts towards their parents. I would wake in the morning and have those few seconds of bliss where I was unaware then the realisation would hit that it wasn't a nightmare. It was real. I spent many hours on special needs forums, asking other mums if my son had this condition. I was often sent links to a poem called "Welcome to Holland" - an analogy which compares having a healthy child to a fabulous trip to Italy and having a special needs child - where your journey takes an unexpected turn and you end up in Holland. I hated Holland. I didn't want to be there. I wanted to be on the beach in Italy, building sand castles and eating my body weight in gorgeous Italian ice cream. That's where I should be. That's where I was supposed to be. S refused to talk about it, he didn't believe it so I spoke to my mum often about it - she was the only other person who saw what I saw and she probably stopped me from going mad back then.
Many, many appointments ensued. Paediatricians, speech therapists, support workers, all working with L and giving their ten pence worth. And finally, at the ripe old age of 4, L was diagnosed with autism spectrum disorder. The last 3 years have been emotional to say the least. It's been a long journey and there have been many tears - and I'm sure I will shed many more along the way. But things are different now. The sadness and anxiety from 3 years ago has lifted. My beautiful baby has grown into a beautiful boy who is smart, funny and a joy to be around. Autism is just a little part of him and it's a part of all of us. I'm not the same person I was when he was born. Motherhood changes you anyway, and being a mummy to a special little person changes you even more. L is teaching me more about life than I could ever teach him and I appreciate so much now - I'm learning what life is all about and it's all thanks to him and a little thing called autism.
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