29/01/14
Luke is an extremely active little boy - sometimes a little too active! Luke went back to nursery today after having 2 days off due to a sickness bug that's doing the rounds at the minute, and I had to list all the bumps and bruises he has.
He has a bruise on his cheek because he decided swinging on my curtains was super fun, and the curtain pole came down and smacked him in the face! He has a blister on his hand after touching the glass dish that had just come out of the oven! He has a graze all down one thigh after running outside with no shoes on, running on a mossy patch and sliding across the patio... Bumps and bruises are a regular occurrence for Luke.
Luke has a ridiculously high pain threshold, that quite often he is a danger to himself. We have a gas fire in our front room and he sits really close to it, and quite often doesn't realise just how hot he is getting. He touches hot things and doesn't immediately feel that they are burning him, and so he holds it for 5 or 6 seconds before letting go.
He also has no safety awareness and no sense of fear. In a lot of ways he is a danger to himself and others around him. I've had to start filming him when he's doing things, so that when I have to take him to A&E I can show them what he does (the way he's going it will only be a matter of time!). He has currently taken to climbing up on the furniture and jumping off it...
Bumps and bruises are inevitable with any child, but having an autistic child who is active and a bit of a daredevil, means that you have to be super vigilant at all times. You know how some people say "You're making me tired just watching you"? That actually happens with Luke. You get so physically and mentally tired watching him constantly. You can't even leave him alone long enough to go to the toilet without him doing something. But his safety and well being are my highest priority. I hope that one day I'll be able to pee in peace, but until then I'll always be watching him like a hawk.
Lukey is an escape artist. I call him my little Houdini. I always lock the door when we come in, but Luke can work the keys. I take the keys out, but he knows which key goes in which lock. So I made his dad put chains on the doors so that he wouldn't be able to get out. So all he does now drag something up to the doors and takes the chains off. Sometimes people forget to re-lock or re-chain the door when they get in and Luke runs off. So it can be very tiring some days.
Luke is also quite the naturist. He hates wearing clothes, particularly trousers, pants and socks. He's OK wearing them in public, but as soon as he gets home they come straight off. He has sensory processing disorder as well as the autism and it's a little too much for him. He doesn't like to feel confined in his clothes, and sometimes he doesn't like the texture of his trousers, or the way the clothes touch his skin... Some days he keeps his t-shirts or jumpers on, but most days they come off too and he ends up running round as naked as the day he was born. So, for anyone who has or will be visiting us at home, Luke's nakedness is a common occurrence for us and we don't think anything of it. I understand that it can be quite as shock for new people to see a 4 year old running around with no clothes on, but that's what Luke needs and if he's happy then I'm happy.
We have very good days and very bad days. However, thankfully majority of our days are mixture of good and bad.
Some of the comments I've been getting about my blog are fantastic, and I really appreciate the support, the encouragement and even the fact that any of you bother to read it! I only really started this as a vent for myself - sometimes a girl just needs to rant and rave about things, and writing it down seems to help. But I just wanted you all to know that I'm not writing this for recognition, or sympathy or anything, this is purely for myself, my one selfish thing. If I can educate a few people along the way then that's an added bonus. If someone reads this who has autistic child with any similar traits to Luke and it helps them to know that they aren't alone, then that is also an added bonus.
Take care guys :)
Wednesday 29 January 2014
Tuesday 28 January 2014
Everything Is Different
28/01/14
When I was at school, I wasn't what you would call one of the popular crowd. However, I had plenty of friends. I had the ability to find something in common with everyone, and therefore was quite easy to get along with. I'm not saying it was a walk in the park - I could be nasty, I could be a bitch, according to a few boys I was friends with I had quite a temper and that usually ended up with painful private areas for them.
I always tried to make people feel comfortable and accepted for who they were. I would fight for anybody who needed it, both figuratively and literally.
My point is, I had friends. I had my inner circle of 4 or 5 people, and I had the outer circle who I always made time for too.
I left school 6 years ago, and I find myself with 3 friends. 3 real friends that I speak to regularly and see occasionally.
I got pregnant with Luke when I was 17 years old, and he was born 2 weeks after I turned 18. A healthy, happy, 8lb 13oz little boy. And then the friends started to dwindle. No one wants to be accompanied by a baby everywhere they go. The invitations to go out stopped, the offers to come round to my house stopped. At this point I had 3 friends. One tried to get with my partner behind my back, so she soon got kicked to the curb! One disappeared into thin air, but one I still see on a semi-regular basis. She has a life, I have Luke and we try to work around each others schedules.
I have 2 friends that have come back in to my life just recently. Well, one was about 18 months go... One is a lovely, lovely person. My bestie :) He works down the road from where I live and so we see each other kind of regularly, it just depends what shifts he's working. I've known my bestie since I was about 7, through a school holiday play scheme. We went because both of ours parents worked for the local council. We lost touch for a few years, but when we started talking again it was like we'd only seen each other yesterday. He's a true friend, and I wish for every happiness for you in the future. Will, your friendship, wisdom and loving advice mean the world to me.
My other friend is Jay. He came to see us last Friday, and is coming again this Friday. He is lovely, funny and he likes my boy. He is patient, and playful with Luke, which I amazing as not people like to be around him for any length of time. I've not seen Jay for about 6 years and it's so nice to be back in contact with him.
So, after people a semi popular girl at school, I am now down to 3 friends. And it's lonely. My days are lonely, with only Luke for company. I love Luke very much, but sometimes it would be nice to have some adult conversation.
People don't like to see us, because majority of them don't understand Luke. They doesn't understand his autism or why he behaves the way that he does. They become uncomfortable and 9 times out of 10 are never to be seen again.
When I try to explain, they think I'm talking about him too much and that also makes them uncomfortable.
On the bright side, people know and understand that Luke is my life. He is my main priority. So perhaps that is why they don't invite me/us anywhere... Who knows. I also don't want to put people on the spot by asking them, and quite frankly I'm not really sure that I want to hear the answer.
Other people who have children don't understand why I was so excited and proud of the little things that Luke accomplishes. Luke finally came out of nappies 6 weeks ago. He is now completely dry at night time!! YAY!! But other parents don't understand why that is such an achievement for us. But it is! We were told that Luke would be severely behind everyone else, even our paediatrician is amazed that he is toilet trained. Luke's achievements may seem like small things for the people whose children have already accomplished it or did it long before. But everything is an achievement for us, when he doesn't manage to do something I don't see it as a failure - it is merely a stepping stone towards an achievement.
People often ask me how I'm so optimistic all the time. I'm not. I have days where I don't want to get out of bed (not just because it's warm and super comfy!). I have days where I need to beg somebody else to watch Luke because he's having a bad day and I can't take any more. But I always put a smile on my face, I always try and tolerate the vast majority of people who decide to judge Luke's behaviour and come up with the wrong answer. If they catch me on a bad day I usually rip their heads off like a mama bear protecting her cubs (hence the name).
I've had this thing, almost a mantra, since I was about 11. It's really quite simple, and not all that unique. Many people have the same one.
Mess with one of my people, and I will mess with you.
This has applied to both my friends and my family, and still does now. If any of my friends needed me, I would be there. I almost get something going on that resembles Liam Neeson in Taken. You know the whole "If you are looking for ransom, I can tell you I don't have any money. But what I do have is a particular set of skills, skills that I have acquired over a long career... Let (insert name here) go now, that will be the end of it. I will not look for you, I will not pursue you. But if you don't, I will find you and I will kill you".
So, I haven't acquired skills over a long career, but I have acquired skills from martial arts. I wouldn't literally kill someone, but I'd kick their ass. Both of my kids know this, I will always have their back.
We had a bit of a strange weekend. Luke has been super sensitive to everything this weekend, and had a few meltdowns over Saturday and Sunday, so my Liam Neeson/Mama Bear thing came into play a few times.
I've found something amazing though. On eBay, I've little cards (business card size) to hand out to people who feel the need to stare and comment about Luke's behaviour. They explain that he has autism and why he's behaving the way he is and then very politely says that I am happy to answer questions, but rude comments and stares aren't very helpful. I have some on order!
Anyway, it turned out that Luke hasn't been feeling very well. He was sick yesterday morning before nursery, and so has had to have 2 days off. Luke is verbal, but not very much. He has limited vocabulary and struggles to communicate his wants and needs to us - but majority of people can't understand a word he's saying. So he couldn't tell us that he didn't feel very well - and I was dragging him round the supermarket and such like as normal.
Just because people can't speak, doesn't mean that they have nothing to say.
When I was at school, I wasn't what you would call one of the popular crowd. However, I had plenty of friends. I had the ability to find something in common with everyone, and therefore was quite easy to get along with. I'm not saying it was a walk in the park - I could be nasty, I could be a bitch, according to a few boys I was friends with I had quite a temper and that usually ended up with painful private areas for them.
I always tried to make people feel comfortable and accepted for who they were. I would fight for anybody who needed it, both figuratively and literally.
My point is, I had friends. I had my inner circle of 4 or 5 people, and I had the outer circle who I always made time for too.
I left school 6 years ago, and I find myself with 3 friends. 3 real friends that I speak to regularly and see occasionally.
I got pregnant with Luke when I was 17 years old, and he was born 2 weeks after I turned 18. A healthy, happy, 8lb 13oz little boy. And then the friends started to dwindle. No one wants to be accompanied by a baby everywhere they go. The invitations to go out stopped, the offers to come round to my house stopped. At this point I had 3 friends. One tried to get with my partner behind my back, so she soon got kicked to the curb! One disappeared into thin air, but one I still see on a semi-regular basis. She has a life, I have Luke and we try to work around each others schedules.
I have 2 friends that have come back in to my life just recently. Well, one was about 18 months go... One is a lovely, lovely person. My bestie :) He works down the road from where I live and so we see each other kind of regularly, it just depends what shifts he's working. I've known my bestie since I was about 7, through a school holiday play scheme. We went because both of ours parents worked for the local council. We lost touch for a few years, but when we started talking again it was like we'd only seen each other yesterday. He's a true friend, and I wish for every happiness for you in the future. Will, your friendship, wisdom and loving advice mean the world to me.
My other friend is Jay. He came to see us last Friday, and is coming again this Friday. He is lovely, funny and he likes my boy. He is patient, and playful with Luke, which I amazing as not people like to be around him for any length of time. I've not seen Jay for about 6 years and it's so nice to be back in contact with him.
So, after people a semi popular girl at school, I am now down to 3 friends. And it's lonely. My days are lonely, with only Luke for company. I love Luke very much, but sometimes it would be nice to have some adult conversation.
People don't like to see us, because majority of them don't understand Luke. They doesn't understand his autism or why he behaves the way that he does. They become uncomfortable and 9 times out of 10 are never to be seen again.
When I try to explain, they think I'm talking about him too much and that also makes them uncomfortable.
On the bright side, people know and understand that Luke is my life. He is my main priority. So perhaps that is why they don't invite me/us anywhere... Who knows. I also don't want to put people on the spot by asking them, and quite frankly I'm not really sure that I want to hear the answer.
Other people who have children don't understand why I was so excited and proud of the little things that Luke accomplishes. Luke finally came out of nappies 6 weeks ago. He is now completely dry at night time!! YAY!! But other parents don't understand why that is such an achievement for us. But it is! We were told that Luke would be severely behind everyone else, even our paediatrician is amazed that he is toilet trained. Luke's achievements may seem like small things for the people whose children have already accomplished it or did it long before. But everything is an achievement for us, when he doesn't manage to do something I don't see it as a failure - it is merely a stepping stone towards an achievement.
People often ask me how I'm so optimistic all the time. I'm not. I have days where I don't want to get out of bed (not just because it's warm and super comfy!). I have days where I need to beg somebody else to watch Luke because he's having a bad day and I can't take any more. But I always put a smile on my face, I always try and tolerate the vast majority of people who decide to judge Luke's behaviour and come up with the wrong answer. If they catch me on a bad day I usually rip their heads off like a mama bear protecting her cubs (hence the name).
I've had this thing, almost a mantra, since I was about 11. It's really quite simple, and not all that unique. Many people have the same one.
Mess with one of my people, and I will mess with you.
This has applied to both my friends and my family, and still does now. If any of my friends needed me, I would be there. I almost get something going on that resembles Liam Neeson in Taken. You know the whole "If you are looking for ransom, I can tell you I don't have any money. But what I do have is a particular set of skills, skills that I have acquired over a long career... Let (insert name here) go now, that will be the end of it. I will not look for you, I will not pursue you. But if you don't, I will find you and I will kill you".
So, I haven't acquired skills over a long career, but I have acquired skills from martial arts. I wouldn't literally kill someone, but I'd kick their ass. Both of my kids know this, I will always have their back.
We had a bit of a strange weekend. Luke has been super sensitive to everything this weekend, and had a few meltdowns over Saturday and Sunday, so my Liam Neeson/Mama Bear thing came into play a few times.
I've found something amazing though. On eBay, I've little cards (business card size) to hand out to people who feel the need to stare and comment about Luke's behaviour. They explain that he has autism and why he's behaving the way he is and then very politely says that I am happy to answer questions, but rude comments and stares aren't very helpful. I have some on order!
Anyway, it turned out that Luke hasn't been feeling very well. He was sick yesterday morning before nursery, and so has had to have 2 days off. Luke is verbal, but not very much. He has limited vocabulary and struggles to communicate his wants and needs to us - but majority of people can't understand a word he's saying. So he couldn't tell us that he didn't feel very well - and I was dragging him round the supermarket and such like as normal.
Just because people can't speak, doesn't mean that they have nothing to say.
Thursday 23 January 2014
Stupid People
We seem to be having nothing but bad days this week.
So far today Luke has had 2 meltdowns.
We went into the city centre today to meet my mum for lunch, which meant getting the bus. Luke is a bit hit and miss on a bus anyway, but he always sits at the very back of the us on the right hand side. Someone was in 'his' seat so he obviously couldn't sit there and then proceeded to do nothing but scream the whole way into town - thankfully its only a 15 minute journey!
Some of you will be thinking 'he's a toddler, he's bound to have tantrums'. You have obviously never been near a child having a meltdown. A meltdown can last anywhere from 5 minutes to 2 hours with Luke.
On a good week, we get one meltdown. On a bad week, we get between 4 and 10.
So on Facebook today, I've seen a picture posted by a Christian group that says "God controls the weather and has out tornadoes and diseases such as autism and dementia on Earth as punishment for gay rights and legalised abortions". I've tried to upload it, but it won't let me.
Needless to say I hit the roof and got in to a full on argument with them!
I said that I am not gay (although fully support those who are), and have never had an abortion. I don't do drugs nor have I ever gone into prostitution. So why would God be punishing me or my child? The answer I got was because I do support gay people, I condone abortion in the right circumstances and our country allows (to a certain extent) the use of drugs, I live in sin (I'm not married and live with my partner) and because I had a child out of wedlock. Oh, and because I'm an atheist. What a bunch of absolute morons!
If that is their God then we need to have some serious words! Their God needs to grow up and catch up with the times!
I'm not anti-religion - I think people have the right to believe in whatever they like, even if it's pink unicorns or aliens. I, personally, need some solid proof before I commit to anything.
So, after a lengthy argument, it was decided that I'm going to burn in hell for my sins. So much for all sins being forgiven. So I rocked the boat a little and said "SMITE ME, MIGHTY SMITER!"
Rant over for today guys :)
Please just bare in mind that people are not always what they seem.
So far today Luke has had 2 meltdowns.
We went into the city centre today to meet my mum for lunch, which meant getting the bus. Luke is a bit hit and miss on a bus anyway, but he always sits at the very back of the us on the right hand side. Someone was in 'his' seat so he obviously couldn't sit there and then proceeded to do nothing but scream the whole way into town - thankfully its only a 15 minute journey!
Some of you will be thinking 'he's a toddler, he's bound to have tantrums'. You have obviously never been near a child having a meltdown. A meltdown can last anywhere from 5 minutes to 2 hours with Luke.
MeltdownsIf the tantrum is straightforward, the meltdown is every known form of manipulation, anger, and loss of control that the child can muster up to demonstrate. The problem is that the loss of control soon overtakes the child. He needs you to recognize this behaviour and rein him back in, as he is unable to do so. A child with autism in the middle of a meltdown desperately needs help to gain control.
* During a meltdown, a child with autism does not look, nor care, if those around him are reacting to his behaviour.
* A child in the middle of a meltdown does not consider her own safety.
* A child in a meltdown has no interest or involvement in the social situation.
* Meltdowns will usually continue as though they are moving under their own power and wind down slowly.
* A meltdown conveys the feeling that no one is in control.
* A meltdown usually occurs because a specific want has not been permitted and after that point has been reached, nothing can satisfy the child until the situation is over.
Unlike tantrums, meltdowns can leave even experienced parents at their wit's end, unsure of what to do. When you think of a tantrum, the classic image of a child lying on the floor with kicking feet, swinging arms, and a lot of screaming is probably what comes to mind. This is not even close to a meltdown. A meltdown is best defined by saying it is a total loss of behavioural control. It is loud, risky at times, frustrating, and exhausting.ESSENTIALWhen your child launches into a meltdown, remove him from any areas that could harm him or he could harm. Glass shelving and doors may become the target of an angry foot, and avoiding injury is the top priority during a meltdown.
* During a meltdown, a child with autism does not look, nor care, if those around him are reacting to his behaviour.
* A child in the middle of a meltdown does not consider her own safety.
* A child in a meltdown has no interest or involvement in the social situation.
* Meltdowns will usually continue as though they are moving under their own power and wind down slowly.
* A meltdown conveys the feeling that no one is in control.
* A meltdown usually occurs because a specific want has not been permitted and after that point has been reached, nothing can satisfy the child until the situation is over.
Unlike tantrums, meltdowns can leave even experienced parents at their wit's end, unsure of what to do. When you think of a tantrum, the classic image of a child lying on the floor with kicking feet, swinging arms, and a lot of screaming is probably what comes to mind. This is not even close to a meltdown. A meltdown is best defined by saying it is a total loss of behavioural control. It is loud, risky at times, frustrating, and exhausting.ESSENTIALWhen your child launches into a meltdown, remove him from any areas that could harm him or he could harm. Glass shelving and doors may become the target of an angry foot, and avoiding injury is the top priority during a meltdown.
On a good week, we get one meltdown. On a bad week, we get between 4 and 10.
So on Facebook today, I've seen a picture posted by a Christian group that says "God controls the weather and has out tornadoes and diseases such as autism and dementia on Earth as punishment for gay rights and legalised abortions". I've tried to upload it, but it won't let me.
Needless to say I hit the roof and got in to a full on argument with them!
I said that I am not gay (although fully support those who are), and have never had an abortion. I don't do drugs nor have I ever gone into prostitution. So why would God be punishing me or my child? The answer I got was because I do support gay people, I condone abortion in the right circumstances and our country allows (to a certain extent) the use of drugs, I live in sin (I'm not married and live with my partner) and because I had a child out of wedlock. Oh, and because I'm an atheist. What a bunch of absolute morons!
If that is their God then we need to have some serious words! Their God needs to grow up and catch up with the times!
I'm not anti-religion - I think people have the right to believe in whatever they like, even if it's pink unicorns or aliens. I, personally, need some solid proof before I commit to anything.
So, after a lengthy argument, it was decided that I'm going to burn in hell for my sins. So much for all sins being forgiven. So I rocked the boat a little and said "SMITE ME, MIGHTY SMITER!"
Rant over for today guys :)
Please just bare in mind that people are not always what they seem.
Tuesday 21 January 2014
One Of Those Days
21/1/14
Sometimes, you have to put on a brave face. You have to smile, you have to pretend that your child went to sleep at a reasonable time the night before, you have to try and not complain too much because quite frankly, not many people are interested. You have to try not to be offended when people say 'you look tired today', or 'Luke doesn't seem very happy today'. You have try not jump down people's throats when they ask, what seems to me, stupid questions. "Is he like this often?", "You've got your hands full with that one".
You have to listen to everybody else's troubles and try and give them advice, but when you want someone to talk to there seems to nobody there.
Just today, I've had 3 people telling me their life stories and their problems. A lovely old lady at the bus stop was telling me about her grandchildren and how she's got to have an operation...
A friend of mine is telling me all the woes or her life - I care, don't get me wrong, but when I want to talk to her about my woes she's always busy.
The only person I can really vent to is the ever wonderful Fiona at Luke's nursery. As ever, I am extremely grateful to you - as are the other parents you see.
For those who don't know, I also have a 15 year old stepdaughter - Lauren. The rule seems to be that a teenager's life is full of drama. So on top of an autistic 4 year old, I have a drama filled 15 year old to contend with too! Problems with school, with friends, with teachers, with hormones, with boys... It's all very tiring! I would like to take a moment to sincerely apologize to my mum and dad if I was ever that bad - truly, I'm sorry.
So my point about Lauren is, she says no one has time for her. Luke gets all the attention, so on so forth. To a certain extent, he does. You can't leave him alone for more than 30 seconds before he goes into destructive mode, screaming, throwing things etc. But, I thought I always made time for her, I always listen when she is saying something, I send her silly pictures that I find to make her laugh, I make her favourite food as often as I can so that she knows she is being thought of and not being neglected. Apparently I was very wrong. If anybody has any tips on how to juggle a hormonal teenager and a special needs child, I would be very grateful to hear them.
I have stolen a fantastic idea from a dear friend and I have made a 'Happy Jar'. Whenever something happens that is good, I scribble it down on a piece of paper and put it inside. On a bad day, I can look at one or two and remember that that whilst the life is bumpy sometimes, they are really just little pot holes in the road.
I saw a picture the other day on the Autism Facebook page, and I was quite offended. It said "It's ok to be a glow stick, sometimes we have to break before we can shine". Luke is not broken, nor is any other child with or without disabilities. Luke is different, and let's face it, if everyone was the same life would be so dull. To imply that, is rude and disrespectful - and yet shows the lack of understanding for what is becoming a more frequently diagnosed disorder.
10 years ago, 1 in 1000 people were diagnosed with ASD. 5 years ago, 1 in every 500. Today, 1 in 100 people are diagnosed with some form of Autism Spectrum Disorder.
Autism is one of those things that isn't heard of, unless someone you know has an autistic relative, or a child at your child's school has it. I think that because autism is becoming more and more common, that awareness needs to be raised so that everyone knows about it.
No one really knows for sure what causes autism. Some say it's the vaccines that you give your children as babies, some say it's all the chemicals that are in the food that we eat and the air that we breathe. In Luke's case it could have been the meningitis he had at 5 months or any number of things. But regardless of what cause it, I think that people need to know about it.
No person with autism is the same as another person with autism. Some may share common traits, but they are never identical in behaviour. Some are quiet, some are loud, some are genius', some a mentally limited.
As always, I am grateful for my child as he is :)
No one will ever love you as much as I do Lukey, never ever xx
Sorry for the rambling - it's been one of those days!
Sometimes, you have to put on a brave face. You have to smile, you have to pretend that your child went to sleep at a reasonable time the night before, you have to try and not complain too much because quite frankly, not many people are interested. You have to try not to be offended when people say 'you look tired today', or 'Luke doesn't seem very happy today'. You have try not jump down people's throats when they ask, what seems to me, stupid questions. "Is he like this often?", "You've got your hands full with that one".
You have to listen to everybody else's troubles and try and give them advice, but when you want someone to talk to there seems to nobody there.
Just today, I've had 3 people telling me their life stories and their problems. A lovely old lady at the bus stop was telling me about her grandchildren and how she's got to have an operation...
A friend of mine is telling me all the woes or her life - I care, don't get me wrong, but when I want to talk to her about my woes she's always busy.
The only person I can really vent to is the ever wonderful Fiona at Luke's nursery. As ever, I am extremely grateful to you - as are the other parents you see.
For those who don't know, I also have a 15 year old stepdaughter - Lauren. The rule seems to be that a teenager's life is full of drama. So on top of an autistic 4 year old, I have a drama filled 15 year old to contend with too! Problems with school, with friends, with teachers, with hormones, with boys... It's all very tiring! I would like to take a moment to sincerely apologize to my mum and dad if I was ever that bad - truly, I'm sorry.
So my point about Lauren is, she says no one has time for her. Luke gets all the attention, so on so forth. To a certain extent, he does. You can't leave him alone for more than 30 seconds before he goes into destructive mode, screaming, throwing things etc. But, I thought I always made time for her, I always listen when she is saying something, I send her silly pictures that I find to make her laugh, I make her favourite food as often as I can so that she knows she is being thought of and not being neglected. Apparently I was very wrong. If anybody has any tips on how to juggle a hormonal teenager and a special needs child, I would be very grateful to hear them.
I have stolen a fantastic idea from a dear friend and I have made a 'Happy Jar'. Whenever something happens that is good, I scribble it down on a piece of paper and put it inside. On a bad day, I can look at one or two and remember that that whilst the life is bumpy sometimes, they are really just little pot holes in the road.
I saw a picture the other day on the Autism Facebook page, and I was quite offended. It said "It's ok to be a glow stick, sometimes we have to break before we can shine". Luke is not broken, nor is any other child with or without disabilities. Luke is different, and let's face it, if everyone was the same life would be so dull. To imply that, is rude and disrespectful - and yet shows the lack of understanding for what is becoming a more frequently diagnosed disorder.
10 years ago, 1 in 1000 people were diagnosed with ASD. 5 years ago, 1 in every 500. Today, 1 in 100 people are diagnosed with some form of Autism Spectrum Disorder.
Autism is one of those things that isn't heard of, unless someone you know has an autistic relative, or a child at your child's school has it. I think that because autism is becoming more and more common, that awareness needs to be raised so that everyone knows about it.
No one really knows for sure what causes autism. Some say it's the vaccines that you give your children as babies, some say it's all the chemicals that are in the food that we eat and the air that we breathe. In Luke's case it could have been the meningitis he had at 5 months or any number of things. But regardless of what cause it, I think that people need to know about it.
No person with autism is the same as another person with autism. Some may share common traits, but they are never identical in behaviour. Some are quiet, some are loud, some are genius', some a mentally limited.
As always, I am grateful for my child as he is :)
No one will ever love you as much as I do Lukey, never ever xx
Sorry for the rambling - it's been one of those days!
Friday 17 January 2014
Bad Days and Good Days.
17/01/14
Today has been a bad day. Bad days are expected to a certain extent with all children, but with an autistic child it isn't once a month as it is with 'normal' children (I use the term normal very loosely, if everyone was the same it'd be super boring!). Luke has roughly 3-4 bad days per week. This can be anything from screaming fits, to meltdowns, to violent tantrums. He throws his toys in people's faces, hits, bites, kicks and spits.
So today, Luke has thrown a die cast train in my face (Ouch!!), trashed the front room twice (once after I cleaned up the first time) and screamed pretty much all day for no apparent reason.
Luke has a lot of bad days, and bad nights too. His sleeping patterns are hit and miss. He's usually in bed between 8pm and 9pm, but quite often is still awake in the early hours of the morning - which means I am too. He's not been to bad for the last week, but it'll go back to normal soon enough.
As I've said before, we're not as bad off as some people are, and my heart goes out to those people. So if you see me, and I look like death warmed up and more bags under my eyes than East Midlands Airport, please don't say how tired I look, or comment on the fact that I have no makeup on and haven't done my hair.
We've been given the choice to medicate Luke when he turns 6, which isn't for another 2 years, but at the minute I don't want to. Life is difficult at the minute, but I don't want Luke to end up like a zombie. He's my baby and I love him just the way he is. Although if I call him my baby he says "No baby, I Luke".
His speech isn't great, before he started nursery his vocabulary had about 5 words in it. The speech and language therapist has put his speech and understanding at the same level as a 2 year old. We both try our best to understand each other, but if Luke can't understand what people are saying to him he shuts down, and the same if you can't understand him. We have a few tricks to get around it - sometimes if it's clear he wants something but not what it is we'll ask him to show us and that seems to help. I think the key (for me anyway) is to just accept your child for who they are, and try your best. No one can ask more than that.
Plus, I've started to teach him makaton signs. Which are brilliant! He can now sign, car, bus, tree, aeroplane, bird, drink, toilet, food, please and thank you.
We've been remarkably lucky with the professional side of things. Luke only started nursery in January 2013, and no one knew he had special needs. He's been this way since he had meningococcal septicaemia at 5 months old, so I didn't even know. Having never had much contact with babies or small children (babysitting jobs and hobbies all had children over 8 years old), I didn't really notice that he was different. We missed his 2 and half year review with the health visitor because of a bereavement in the family and never had another appointment, so when he went to nursery they weren't prepared for his additional needs. On day 2 of being at nursery the SENCo (Special Educational Needs Coordinator) took me to one side and said "There's something not quite right with your son", which immediately got my back up. I don't know how I'd begin to tell someone that I think there child is 'different', but that would definitely not be the way!
I phoned our GP and made an appointment for the following day, we were then referred to the paediatrician and health visitor.
Luke needed 2:1 support at this point, but at the minute he seems to be doing well and has 1:1 support and is in a group at singing and story time.
Within 3 months, we had an appointment with the paediatrician and he was going to get reports from other professionals before making a diagnosis. Skip forward another 3 months, after having blood test (in case it was a genetic thing), seeing speech and language therapists, the educational psychologist and the health visitor, we had a diagnosis of ASD (Autism Spectrum Disorder). We now have a statement of educational needs (which is needed to get into special schools) and a placement at an extremely good school which specialises in autism, and he starts in September. Other people haven't even had their statement yet, so we are incredibly lucky that it has all been moving so quickly.
The school we have chosen is a mainstream school, but has incredible special needs programme. They try to put the 'special' children in with the mainstream children where possible so that they are pushed to achieve - but in a nice way. So, if Luke is particularly good at maths, he will be in the mainstream classes with the mainstream children, but will be in The Arc for the other lessons.
Luke is a bright boy, and so I think he needs the firmer route of education. When we were looking at schools for him we went to our chosen school and another which was purely for disabled children. Whilst the other school was amazing, it had a higher budget, more resources etc. the lady that we saw said that a good day for them is when the children acknowledge they are in the same room as them. So that wasn't a fit for Luke.
I am truly grateful for the help Luke has received, and also as ever to Fiona for all you have done for us both.
Please, remember that people aren't always what they seem on the outside. An age old lesson we were all taught as children - never judge a book by it's cover. And 'if you have nothing nice to say, don't say anything' seems pretty appropriate too.
Today has been a bad day. Bad days are expected to a certain extent with all children, but with an autistic child it isn't once a month as it is with 'normal' children (I use the term normal very loosely, if everyone was the same it'd be super boring!). Luke has roughly 3-4 bad days per week. This can be anything from screaming fits, to meltdowns, to violent tantrums. He throws his toys in people's faces, hits, bites, kicks and spits.
So today, Luke has thrown a die cast train in my face (Ouch!!), trashed the front room twice (once after I cleaned up the first time) and screamed pretty much all day for no apparent reason.
Luke has a lot of bad days, and bad nights too. His sleeping patterns are hit and miss. He's usually in bed between 8pm and 9pm, but quite often is still awake in the early hours of the morning - which means I am too. He's not been to bad for the last week, but it'll go back to normal soon enough.
As I've said before, we're not as bad off as some people are, and my heart goes out to those people. So if you see me, and I look like death warmed up and more bags under my eyes than East Midlands Airport, please don't say how tired I look, or comment on the fact that I have no makeup on and haven't done my hair.
We've been given the choice to medicate Luke when he turns 6, which isn't for another 2 years, but at the minute I don't want to. Life is difficult at the minute, but I don't want Luke to end up like a zombie. He's my baby and I love him just the way he is. Although if I call him my baby he says "No baby, I Luke".
His speech isn't great, before he started nursery his vocabulary had about 5 words in it. The speech and language therapist has put his speech and understanding at the same level as a 2 year old. We both try our best to understand each other, but if Luke can't understand what people are saying to him he shuts down, and the same if you can't understand him. We have a few tricks to get around it - sometimes if it's clear he wants something but not what it is we'll ask him to show us and that seems to help. I think the key (for me anyway) is to just accept your child for who they are, and try your best. No one can ask more than that.
Plus, I've started to teach him makaton signs. Which are brilliant! He can now sign, car, bus, tree, aeroplane, bird, drink, toilet, food, please and thank you.
We've been remarkably lucky with the professional side of things. Luke only started nursery in January 2013, and no one knew he had special needs. He's been this way since he had meningococcal septicaemia at 5 months old, so I didn't even know. Having never had much contact with babies or small children (babysitting jobs and hobbies all had children over 8 years old), I didn't really notice that he was different. We missed his 2 and half year review with the health visitor because of a bereavement in the family and never had another appointment, so when he went to nursery they weren't prepared for his additional needs. On day 2 of being at nursery the SENCo (Special Educational Needs Coordinator) took me to one side and said "There's something not quite right with your son", which immediately got my back up. I don't know how I'd begin to tell someone that I think there child is 'different', but that would definitely not be the way!
I phoned our GP and made an appointment for the following day, we were then referred to the paediatrician and health visitor.
Luke needed 2:1 support at this point, but at the minute he seems to be doing well and has 1:1 support and is in a group at singing and story time.
Within 3 months, we had an appointment with the paediatrician and he was going to get reports from other professionals before making a diagnosis. Skip forward another 3 months, after having blood test (in case it was a genetic thing), seeing speech and language therapists, the educational psychologist and the health visitor, we had a diagnosis of ASD (Autism Spectrum Disorder). We now have a statement of educational needs (which is needed to get into special schools) and a placement at an extremely good school which specialises in autism, and he starts in September. Other people haven't even had their statement yet, so we are incredibly lucky that it has all been moving so quickly.
The school we have chosen is a mainstream school, but has incredible special needs programme. They try to put the 'special' children in with the mainstream children where possible so that they are pushed to achieve - but in a nice way. So, if Luke is particularly good at maths, he will be in the mainstream classes with the mainstream children, but will be in The Arc for the other lessons.
Luke is a bright boy, and so I think he needs the firmer route of education. When we were looking at schools for him we went to our chosen school and another which was purely for disabled children. Whilst the other school was amazing, it had a higher budget, more resources etc. the lady that we saw said that a good day for them is when the children acknowledge they are in the same room as them. So that wasn't a fit for Luke.
I am truly grateful for the help Luke has received, and also as ever to Fiona for all you have done for us both.
Please, remember that people aren't always what they seem on the outside. An age old lesson we were all taught as children - never judge a book by it's cover. And 'if you have nothing nice to say, don't say anything' seems pretty appropriate too.
Thursday 16 January 2014
Invisible Disabilities... SUCK!
16th January 2014
Day 2 (Technically day 3... but I didn't have time yesterday!)
So, I just went to check my blog from the 14th, and apparently it isn't there. Not quite sure what's going on with that, but I did do one.
In case nobody else can see it, I'll give you a brief run down.
I'm Kirsty, I'm 22, I have a four year old son named Luke, who has Autism (ASD).
Day 2 (Technically day 3... but I didn't have time yesterday!)
So, I just went to check my blog from the 14th, and apparently it isn't there. Not quite sure what's going on with that, but I did do one.
In case nobody else can see it, I'll give you a brief run down.
I'm Kirsty, I'm 22, I have a four year old son named Luke, who has Autism (ASD).
This is me and my baby!
I started this blog, because a friend of mine and one of her beautiful daughters, have each started a blog. Tanya - you are my inspiration :). Tasha - you are a beautiful, strong, intelligent young lady and I'm very proud of you for opening up to the world.
Tanya's blog is about having 3 daughters, each with illnesses, and the ups, downs and in between bits of life. It is witty, insightful and brilliantly written.
Tasha's is about living with M.E and is heart wrenching, beautifully done and allows people with the same, or similar illness to relate to someone else.
Links - Tasha's... natashamawer.blogspot.com
Tanya's...crazypurplemama.blogspot.com
Anyway, back to us.
Today, I received a letter from the special educational needs department and Luke has a place at our chosen school! YAY! They have an excellent special resources centre and specialises in autism. Which is brilliant. And he is going with another boy from our nursery, so he will have somebody there that he knows! So, we had some good news today - however, Luke has been a nightmare!
Luke's nursery is 1.2 miles away from our house, which is nothing for us, for Luke this is nearly impossible. We usually ride my bike - I say we, I do the pedalling and Luke sits on the handle bars looking cute as always. (It's not fair! Long gone are the days when I could sit around looking cute!)
Currently, my bike is broken. Which means walking to and from nursery 5 days a week, come rain or shine. Luke can walk, he just chooses not to, he constantly wants to be carried and for a 4 year old he is tall and he is heavy (he wears an age 5-6 in clothes), and my back just can't take it. Whilst holding hands, he bites or pinches the back of your hand, to which the immediate reaction is to let go, and then he runs off - quite merrily I might add - towards the road and into on coming traffic! He has no safety awareness of anything and is a constant danger to himself and others around him. Thankfully, our support worker, Fiona, is trying to get us a disability pushchair for him so that it's safe to take him out for long periods of time. Fingers crossed!
Luke gets bored really easily and some days, no matter what you try to do to entertain him he just isn't interested. Today has been one of those days.
Luke enjoys lots of things, it's just finding the facilities that will put up with a special needs child. As I mentioned in my last blog, Luke doesn't play well with others. He struggles to interact with his peers, has trouble sharing, communicating and understanding reactions and emotions. Often other children refuse to play with him because he is 'weird' - a child at nursery actually said this! Needless to say, I had words with the child's mother. Luke loves to play outside, get wet and muddy, climb on things - typical boy stuff. However, finding places that will allow him to be himself are few and far between. Soft play isn't really an option because he is rough and boisterous, the local park isn't an option on weekends because he has been known to push other children off things he wants to go on. Sadly, our area doesn't seem to have many autism friendly places.
Our local cinema has started an Autism Friendly Screening which is fantastic! it's only once a month, but you can take your own food, the sound is lower, the lights are up, there are no annoying adverts and you can move around throughout the film. it's really great to see that places are taking notice of the alarmingly high increase in autism diagnosis and doing something about it.
Autism is an invisible disability. Luke looks like a completely normal child. When he has meltdowns/anxiety people look and stare, tut and make unnecessary comments. I've had people tell me I shouldn't have had a child if I can't handle it, it's clearly bad parenting because I'm a young mother (I don't agree, I know some 'young' mothers who are better parents than the middle-aged mothers!). I've had people tell me that Luke is spoilt, and others telling me to give him what he wants to shut him up. I have had people walk past and say "that child needs a slap". None of this is helpful to the current situation, myself or my child. So please, if you see a child behaving badly, don't automatically assume that it is the bad parenting or anything. Sometimes it is a child with an invisible disability like autism or many of the others that are out there. Short of tattooing I'M AUTISTIC on Luke's head, I'm not entirely sure how to make people understand. But until my dying day I will continue to try and find a way.
Again, thank you for having patience with me throughout my ranting and venting. It means a lot to me. Even if just one person reads this, I hope it helps you.
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