When you look on the internet, on Facebook especially, there are no shortage of inspirational memes and poems about autism. They tell us how it has made us as parents better people, or how we are blessed to have someone with autism in our lives. You know the ones I mean. Now, I love these inspirational postings, heck, I have even made memes along those lines myself, BUT, sometimes, it does the soul much good to take a step back and look at the lighter side of autism parenting. The side we live every day. The side we can all identify with but sometimes feel guilty at smiling about. Well, I don't feel guilty and neither should you. This is our life, and if we want to have a laugh about it at times, well, that's our right.
I made a meme the other day, in a tongue in cheek, lighthearted way, and it went down a storm. People were reading it and nodding their heads and smiling, knowing that the person who made it, just 'got it.' They live the same life. They know it's not all rainbows and butterflies. And they wouldn't change it. But they can laugh about it.
So, I decided to write this post in the same vein about some of the lessons being an autism parent has taught me. Not the ones where I am a better person, or less judgemental, they are a given. These are the REAL everyday lessons. I hope you smile and nod your head when you read some of them.
Lessons being an Autism parent has taught me.
1. Sleep is for wimps.
2. Never buy anything for the house without first considering how much it would hurt were it to be thrown at my head.
3. Disney films are incredibly well made. So much so, that they don't get boring, even on the 6 trillionth watch in any given week.
4. I am perfectly capable of running at Olympic sprint speed should the need arise. It is amazing how fast you can run when you need to catch up with your child.
5. I do actually have eyes in the back of my head.
6. Poo is even messier than I realised. A little goes a long way...
7. Be careful what you say around your child if they are a 'scripter.' Grandma really doesn't appreciate being told by her 4 year old grandson that she is a pain in the ass.
8. Clean furniture is vastly overrated.
9. All those years when I was able to pee in private, I wish I had appreciated them more.
10. People who make seemingly 'crass' comments like 'Oh, but he might grow out of it' actually mean well and don't deserve the slap you are giving them in your head. Sometimes, people with no connection to autism just don't know what to say.
11. Random strangers don't like to be sprayed with apple and blackcurrant flavoured water when they are innocently meandering around Tesco doing their grocery shopping.
12. 'Old MacDonald had a farm' is an incredibly annoying song.
13. Mr Potato Head glasses cannot be bought on their own. They only come with the whole Mr Potato Head set.
14. Having to buy 4 Mr Potato Heads just to get 4 pairs of spare glasses is expensive.
15. Venetian blinds look better when they are all bent in the middle.
16. Fingerprints on the windows only really show up in the sunlight.
17. Always check the knobs on the oven/washing machine/dishwasher/tumble dryer before you switch them on. They aren't always at the setting you left them at.
18. Pizza does burn quickly when in the oven at 240. Even though you put it in at 170.
19. Just because someone asks for grapes, doesn't mean they want grapes.
20. Asking Caidan to do something 'quietly' will result in him running around screaming the word 'quietly' at the top of his voice.
21. I still have so many more lessons to learn. And I am looking forward to learning them.
Please feel free to add any of your own 'lessons' learned in the comments.
Thank you for reading!
Might League Moms
Thursday, 1 August 2013
Tuesday, 23 July 2013
In our autism home.
I know some of you will identify with many of these and many of you will identify with some of these, but here are just some of the things that make it 'our autism home.'
In our autism home, autism speaks. Well, actually, it either mumbles incoherently or it screams at the top of it's lungs. Either way, it takes several goes before we understand what is being said.
In our autism home, it is decorated with juice spills, milk spills and fingerprints. No amount of cleaning them away keeps them away. I have become accustomed to the pretty patterns they make on the walls.
In our autism home, we can tell how much he has grown by the height of the aforementioned fingerprints on the wall.
In our autism home, poo is a hot topic of conversation. Consistency, colour, frequency, we have poo conversations as often as others talk about what they did all day. Probably because poo is a big part of what Caidan did all day, or didn't do, depending on the poo situation at that time.
In our autism home, our kitchen cupboard is full of melatonin and Movicol (for the poo situation!) and some Imigran for mummy's stress induced migraines.
In our autism home, a 'day out' consists of no more than 2 hours. It is always a visit to somewhere very open, like the Botanic Gardens or a country park. Open spaces and nature are a winner. Anything else or any longer a time will pretty much guarantee a meltdown that evening.
In our autism home, sleep is not a right, it is a privilege. A good nights sleep consists of 5 hours unbroken.
In our autism home, we have a constant supply of pork pies, melon, strawberries and fruit smoothie drinks. Life would be hell if we ran out of any of them!
In our autism home, we watch every video of Old Macdonald Had a Farm ever uploaded to You Tube. One after the other. Have you any idea how many videos of Old Mac have been uploaded to You Tube?
In our autism home, we get to watch lots of Disney films. Never all the way through though as we are told to change it after 10 minutes. We have so many films we are now desperate to watch all the way through, but it seems a bit silly to watch Cars of an evening when Caidan might be asleep rather than say, Sherlock or Luther. You know, that thing called 'adult tv.'
In our autism home, we feel sorry for our neighbours who get woken up by screaming at 3am. The only thing I can say is, at least our neighbours can stick earplugs in and go back to sleep. Trust me, we aren't fans of the 3am wake ups either. Especially when daddy has to be up at 6am for an 11 hour shift at work.
In our autism home, people are always welcome. For ten minutes. Usually by that time Caidan is standing in front of them constantly telling them 'Bye bye, it's time to go.' Over and over until they get the hint. When they do decide to leave, they are often given a shove towards the front door. He is nothing if not helpful, my son.
In our autism home, we laugh. We laugh a lot. Without laughter, it would be so much harder to get through. We try and find humour in every situation. Even when it involves poo in the carpet or on the toys or all over Caidan. You have to find the humour. Somehow.
In our autism home, toys are not for playing with. Toys are lethal weapons to be thrown at the head of whoever has displeased Caidan at that time. You would be surprised how much a Mr Men book can hurt if it catches you in the right , or wrong place.
I feel in the last year our reflexes have really improved and we can get ourselves out of the way 7 times out of 10. The windows however, aren't so lucky.
In our autism home, it is normal for mummy and daddy to be hit and kicked. We are thankful that as yet, we have not been bitten. A 4 year old has a lot of strength when he is being stopped from doing something he wants to do, even if it IS dangerous and could involve a trip to the local Children's hospital accident and emergency dept.
In our autism home, we are used to being 'stroked.' By that I mean, I get my left temple stroked and daddy gets his nose stroked. It's a sensory thing, it seems to calm Caidan down. The fact that to us, it is akin to Chinese water torture is irrelevant. Caidan's sensory needs are more important.
In our autism home, we have love and patience and strength in abundance. Autism has made us better people and Caidan teaches us every day. Sometimes they are not lessons we want to learn, but we take the good with the bad. Autism can be heartbreaking but it is also amazing. We celebrate things that to others may seem small and insignificant, but to us and to Caidan, they are the equivalent of climbing Everest! We have learned to appreciate the moments, for they are more important than the milestones where autism is concerned. Our autism home is a happy one, mostly. Yes, there are tears, Caidan's and ours, but for the most part, we are a happy, joyful home. We work hard at it, it could so easily go the other way, but that achieves nothing. We focus on Caidan's strengths whilst working on his weaknesses.
In our autism home, we are doing the best we can to do what's right for Caidan and for us all as a family. And I think we are doing a damn good job of it!
In our autism home, autism speaks. Well, actually, it either mumbles incoherently or it screams at the top of it's lungs. Either way, it takes several goes before we understand what is being said.
In our autism home, it is decorated with juice spills, milk spills and fingerprints. No amount of cleaning them away keeps them away. I have become accustomed to the pretty patterns they make on the walls.
In our autism home, we can tell how much he has grown by the height of the aforementioned fingerprints on the wall.
In our autism home, poo is a hot topic of conversation. Consistency, colour, frequency, we have poo conversations as often as others talk about what they did all day. Probably because poo is a big part of what Caidan did all day, or didn't do, depending on the poo situation at that time.
In our autism home, our kitchen cupboard is full of melatonin and Movicol (for the poo situation!) and some Imigran for mummy's stress induced migraines.
In our autism home, a 'day out' consists of no more than 2 hours. It is always a visit to somewhere very open, like the Botanic Gardens or a country park. Open spaces and nature are a winner. Anything else or any longer a time will pretty much guarantee a meltdown that evening.
In our autism home, sleep is not a right, it is a privilege. A good nights sleep consists of 5 hours unbroken.
In our autism home, we have a constant supply of pork pies, melon, strawberries and fruit smoothie drinks. Life would be hell if we ran out of any of them!
In our autism home, we watch every video of Old Macdonald Had a Farm ever uploaded to You Tube. One after the other. Have you any idea how many videos of Old Mac have been uploaded to You Tube?
In our autism home, we get to watch lots of Disney films. Never all the way through though as we are told to change it after 10 minutes. We have so many films we are now desperate to watch all the way through, but it seems a bit silly to watch Cars of an evening when Caidan might be asleep rather than say, Sherlock or Luther. You know, that thing called 'adult tv.'
In our autism home, we feel sorry for our neighbours who get woken up by screaming at 3am. The only thing I can say is, at least our neighbours can stick earplugs in and go back to sleep. Trust me, we aren't fans of the 3am wake ups either. Especially when daddy has to be up at 6am for an 11 hour shift at work.
In our autism home, people are always welcome. For ten minutes. Usually by that time Caidan is standing in front of them constantly telling them 'Bye bye, it's time to go.' Over and over until they get the hint. When they do decide to leave, they are often given a shove towards the front door. He is nothing if not helpful, my son.
In our autism home, we laugh. We laugh a lot. Without laughter, it would be so much harder to get through. We try and find humour in every situation. Even when it involves poo in the carpet or on the toys or all over Caidan. You have to find the humour. Somehow.
In our autism home, toys are not for playing with. Toys are lethal weapons to be thrown at the head of whoever has displeased Caidan at that time. You would be surprised how much a Mr Men book can hurt if it catches you in the right , or wrong place.
I feel in the last year our reflexes have really improved and we can get ourselves out of the way 7 times out of 10. The windows however, aren't so lucky.
In our autism home, it is normal for mummy and daddy to be hit and kicked. We are thankful that as yet, we have not been bitten. A 4 year old has a lot of strength when he is being stopped from doing something he wants to do, even if it IS dangerous and could involve a trip to the local Children's hospital accident and emergency dept.
In our autism home, we are used to being 'stroked.' By that I mean, I get my left temple stroked and daddy gets his nose stroked. It's a sensory thing, it seems to calm Caidan down. The fact that to us, it is akin to Chinese water torture is irrelevant. Caidan's sensory needs are more important.
In our autism home, we have love and patience and strength in abundance. Autism has made us better people and Caidan teaches us every day. Sometimes they are not lessons we want to learn, but we take the good with the bad. Autism can be heartbreaking but it is also amazing. We celebrate things that to others may seem small and insignificant, but to us and to Caidan, they are the equivalent of climbing Everest! We have learned to appreciate the moments, for they are more important than the milestones where autism is concerned. Our autism home is a happy one, mostly. Yes, there are tears, Caidan's and ours, but for the most part, we are a happy, joyful home. We work hard at it, it could so easily go the other way, but that achieves nothing. We focus on Caidan's strengths whilst working on his weaknesses.
In our autism home, we are doing the best we can to do what's right for Caidan and for us all as a family. And I think we are doing a damn good job of it!
Thursday, 27 June 2013
The Importance of Mr Potato Head's Glasses!
‘Where are the glasses? Where ARE they?’ 7 words. 7 little words. 7 words that strike
terror into the heart of the Henretty household.
I can picture you sitting reading this, screwing your face up and wondering who, other than Mr Potato Head, cares about Mr Potato Head’s glasses?
A little boy, aged 4, that’s who! Our little boy.
I can picture you sitting reading this, screwing your face up and wondering who, other than Mr Potato Head, cares about Mr Potato Head’s glasses?
A little boy, aged 4, that’s who! Our little boy.
Caidan, the 4 year old in question, was diagnosed
with Autism when he was 24 months old. We always knew something was a little
quirky about him, even when he was only 6 months old. He would stare at his
hands in front of his face , or constantly wave them about in front of his
eyes. He was never still. He would lie on his back and kick both legs in the
air and smack them down on the floor with an almighty clatter, over and over
again. It must have hurt, but he never flinched.
When he was 11 months old, we decided we needed to see someone as Caidan had missed all his major milestones. He only learned to roll over at 10 months old and even at 11 months he couldn’t sit up unsupported for any length of time. So, we did the GP thing and were referred to a Paediatrician. The word Autism was never mentioned and never entered our head. But we had a follow up appointment booked for 6 months later and at that appointment I walked in and told her that my son had Autism. In those preceding 6 months, Caidan had regressed in his development. He had stopped being able to eat solid food and he was unable to walk. He had lost his speech and he completely ignored us when we called his name. He had no idea how to play with toys and had no interest in interacting with any of us.
Now, my best friend goes by the name of Google and after much researching on his various ‘symptoms’ the word Autism just kept rearing it’s head, hence me telling the Paediatrician what I did! Anyway, long story short, he was assessed by the specialist team at our Children’s Hospital and was formally diagnosed with Autism on 8th July 2011.
‘But what about the Mr Potato Head glasses??’ I hear you cry!! Well, often, people with Autism can have an attachment to a particular object. It’s like their comfort. It makes them feel safe and secure and without it they get frustrated and anxious. Mr Potato Head’s glasses are Caidan’s ‘comfort.’ He rarely has them out of his hands when at home. I don’t think I have a photograph of him without these little yellow glasses in his hand! We have ‘a pair and a spare’ at home, in the hope that we will not have a glasses emergency. But it has happened. For 3 days last month we hunted the house, high and low, with no sign of either pair and one very unhappy little boy! Thankfully the lovely lady selling a Mr Potato Head on Ebay was very understanding and she posted it out almost immediately. Then another lovely young lady on Facebook, also with autism, found a pair in her bedroom and promptly sent them to Caidan. So we are back to having a pair and a spare again, and somewhere in the house there are 2 pairs of Mr Potato Head glasses, which may or may not be found!! So, you can see why, when we hear those 7 little words, that we all jump up and start searching, hoping against hope that the glasses are under the footstool, or in his bedroom, or in his toybox. Caidan is not the world’s best at remembering where he has thrown something, so he is absolutely no help!
So now you can see the importance of Mr Potato Head’s glasses. If anyone has any that they don’t want, all contributions are gratefully received!!
When he was 11 months old, we decided we needed to see someone as Caidan had missed all his major milestones. He only learned to roll over at 10 months old and even at 11 months he couldn’t sit up unsupported for any length of time. So, we did the GP thing and were referred to a Paediatrician. The word Autism was never mentioned and never entered our head. But we had a follow up appointment booked for 6 months later and at that appointment I walked in and told her that my son had Autism. In those preceding 6 months, Caidan had regressed in his development. He had stopped being able to eat solid food and he was unable to walk. He had lost his speech and he completely ignored us when we called his name. He had no idea how to play with toys and had no interest in interacting with any of us.
Now, my best friend goes by the name of Google and after much researching on his various ‘symptoms’ the word Autism just kept rearing it’s head, hence me telling the Paediatrician what I did! Anyway, long story short, he was assessed by the specialist team at our Children’s Hospital and was formally diagnosed with Autism on 8th July 2011.
‘But what about the Mr Potato Head glasses??’ I hear you cry!! Well, often, people with Autism can have an attachment to a particular object. It’s like their comfort. It makes them feel safe and secure and without it they get frustrated and anxious. Mr Potato Head’s glasses are Caidan’s ‘comfort.’ He rarely has them out of his hands when at home. I don’t think I have a photograph of him without these little yellow glasses in his hand! We have ‘a pair and a spare’ at home, in the hope that we will not have a glasses emergency. But it has happened. For 3 days last month we hunted the house, high and low, with no sign of either pair and one very unhappy little boy! Thankfully the lovely lady selling a Mr Potato Head on Ebay was very understanding and she posted it out almost immediately. Then another lovely young lady on Facebook, also with autism, found a pair in her bedroom and promptly sent them to Caidan. So we are back to having a pair and a spare again, and somewhere in the house there are 2 pairs of Mr Potato Head glasses, which may or may not be found!! So, you can see why, when we hear those 7 little words, that we all jump up and start searching, hoping against hope that the glasses are under the footstool, or in his bedroom, or in his toybox. Caidan is not the world’s best at remembering where he has thrown something, so he is absolutely no help!
So now you can see the importance of Mr Potato Head’s glasses. If anyone has any that they don’t want, all contributions are gratefully received!!
As far as Caidan is concerned now, 2 years after his diagnosis, things are hugely different! His speech is fantastic, he can eat the same food as any other 4 year old. I say ‘can’ because he can, but chooses not to, although he eats lots of fruit, he prefers pizza and chocolate buttons above all else!! His Autism still presents and always will present many difficulties. His social skills are pretty poor, his independent skills are not great, but in every way, every day, we see improvements. We are hopeful that in the next couple of years he will be doing many more things for himself. Autism has also given him an amazing memory and capacity for learning. He could recite and recognise the numbers 0-100 by the time he was 2 and a half. He can say and recognise the whole alphabet AND tell you words that begin with each letter. He can name you almost any animal that walks this planet from a picture.
Caidan has Autism but Autism does not have Caidan. It is only a part of who he is. He has his own personality, his likes and dislikes and a very strong will!! He loves cuddles, gives great eye contact, he can now start a game or a conversation, he initiates play and loves to interact with adults especially. In many ways he is just a typical 4 year old boy. In other ways, he is so much more than that! He is our pride and our joy. Our little warrior. And we wouldn’t change a thing about him. Not for anything.
Except maybe the reliance on those damn Mr Potato Head glasses!
Thursday, 20 June 2013
When is a disability not a disability?
Recently, I seem to have read quite a few things from people who state categorically that autism is NOT a disability. It kind of got me thinking, where do I stand on this? I know that I don't look at Caidan and think 'disabled.' But then I don't look at him and think 'autistic' either, but he is.
Many people have invisible disabilities. Mental illness, arthritis, fybromyalgia etc. But people can't tell just by looking at them. It seems that in order to be considered disabled, you have to have a physical disability, an obvious one. In fact at times, it appears that only those who use a wheelchair are considered disabled.
Well, I call bullshit on that. Any condition that prevents someone doing everything a person without any illness can do, has a condition that is disabling. They are not able to do things others take for granted. Take my son for instance. Other 4 year olds, with no disability or invisible disorder, can take their own jackets off, put them back on, can eat with a fork, they are (mostly) toilet trained, they can tell you when they are hungry, they can tell you when they are thirsty, or when they are feeling ill, or when they don't want to do something or when the do want to do something. They can tell you if they want juice or milk, or what particular cereal they want or whether they want pizza or chicken nuggets. My son can do NONE of those things. Autism makes him NOT ABLE to do them. Therefore, it stands to reason that he is disabled, surely?
Now, I get and understand that many people with autism don't consider themselves disabled and that's fine. Many who are higher functioning and many with Asperger's, they can grow up, get a job, get married, have kids and put their own jackets on, so I guess I can see why they wouldn't consider themselves as disabled. They may have social difficulties and maybe some communication difficulties, but they can generally live an independent life. So yes, I get that they would be a bit miffed at being called disabled. But for many, many more people with autism, or mental illness or other invisible conditions, life isn't like that. They may be non verbal, they may need support for the rest of their lives, they may have no hope of living an independent life or getting married or getting a job or of ever putting their own jacket on. How can they NOT be considered disabled?
More to the point, why do some people see the word 'disabled' as an insult? Some of the most intelligent, inspiring people I know are disabled. It is in no way an insult nor should it ever be taken to mean that someone is worthless or fit for the scrapheap. That is so far from the truth it can't be put into words. Disabled people have a spirit that is amazing. All the obstacles they have to overcome to do things others do easily. That takes strength, courage and commitment. In no way is the word disabled an insult to anyone.
There is far too much judgement goes on in this world. Far too much finger pointing without thinking. Next time you see someone walk out their car into the supermarket, don't automatically assume they are not disabled. Most likely, they have a blue badge, which is not easy to get, believe me. Chances are they have an invisible disability. So think before you judge. In fact, why judge at all? Everyone has a story and it's not always visible to everyone. Think first, think 'invisible disability.'
Think that one day, it might be you that someone is judging wrongly. Think how that would make YOU feel.
Many people have invisible disabilities. Mental illness, arthritis, fybromyalgia etc. But people can't tell just by looking at them. It seems that in order to be considered disabled, you have to have a physical disability, an obvious one. In fact at times, it appears that only those who use a wheelchair are considered disabled.
Well, I call bullshit on that. Any condition that prevents someone doing everything a person without any illness can do, has a condition that is disabling. They are not able to do things others take for granted. Take my son for instance. Other 4 year olds, with no disability or invisible disorder, can take their own jackets off, put them back on, can eat with a fork, they are (mostly) toilet trained, they can tell you when they are hungry, they can tell you when they are thirsty, or when they are feeling ill, or when they don't want to do something or when the do want to do something. They can tell you if they want juice or milk, or what particular cereal they want or whether they want pizza or chicken nuggets. My son can do NONE of those things. Autism makes him NOT ABLE to do them. Therefore, it stands to reason that he is disabled, surely?
Now, I get and understand that many people with autism don't consider themselves disabled and that's fine. Many who are higher functioning and many with Asperger's, they can grow up, get a job, get married, have kids and put their own jackets on, so I guess I can see why they wouldn't consider themselves as disabled. They may have social difficulties and maybe some communication difficulties, but they can generally live an independent life. So yes, I get that they would be a bit miffed at being called disabled. But for many, many more people with autism, or mental illness or other invisible conditions, life isn't like that. They may be non verbal, they may need support for the rest of their lives, they may have no hope of living an independent life or getting married or getting a job or of ever putting their own jacket on. How can they NOT be considered disabled?
More to the point, why do some people see the word 'disabled' as an insult? Some of the most intelligent, inspiring people I know are disabled. It is in no way an insult nor should it ever be taken to mean that someone is worthless or fit for the scrapheap. That is so far from the truth it can't be put into words. Disabled people have a spirit that is amazing. All the obstacles they have to overcome to do things others do easily. That takes strength, courage and commitment. In no way is the word disabled an insult to anyone.
There is far too much judgement goes on in this world. Far too much finger pointing without thinking. Next time you see someone walk out their car into the supermarket, don't automatically assume they are not disabled. Most likely, they have a blue badge, which is not easy to get, believe me. Chances are they have an invisible disability. So think before you judge. In fact, why judge at all? Everyone has a story and it's not always visible to everyone. Think first, think 'invisible disability.'
Think that one day, it might be you that someone is judging wrongly. Think how that would make YOU feel.
Monday, 10 June 2013
Yes, I detest autism sometimes. So sue me!
Autism. It's an integral part of the people who have it. But it's not all of them. They are not only autism.
So why is it so frowned upon for us parents living with autism, to sometimes feel and, heaven forbid, say out loud, that sometimes, we hate autism??
I have read a couple of excellent blogs on this subject recently so I thought I would get my tuppence worth in.
About 70% of the time, autism and I get along just fine. It's there and I am acutely aware of it, it's a bit noisier and messier than I'd like it to be and it doesn't understand as much as I would like it to, but that's fine, we can work on that. It belongs in our house, with our child and we make it welcome, we embrace it, we accept it as part of Caidan's and our lives. We work with it and we notice all the small and huge steps forward it takes and we celebrate every one!
However, that leaves 30%. Yes, about 30% of the time, I hate autism. I detest it with a passion. I wish it would leave our house and never come back. Those times when my son is in meltdown, kicking, hitting, screaming, hurting himself and unable to tell me why. I detest autism at those times. Those times when he wants to do something, like take his own jacket off and he can't, which gets him upset and frustrated. I detest autism at those times. Those times when he can't join in with other kids even though it is obvious he wants to, but he just doesn't know how to do it, and he gets frustrated and angry. I detest autism at those times. Those times when he is ill but he is unable to tell me what hurts or what is making him feel unwell, which gets him frustrated and angry and upset. I detest autism at those times. All of those times, I am unable to perform my primary function as a mother and help my child. Mainly because he either doesn't want me to or I don't know how to. That makes me detest autism too.
But let me make this clear. I detest AUTISM at those times. I do NOT detest my son. My son is so much more than just autism. It is not all he is. But it is autism that is making those times so hard for him.
No one would judge me if I said I hate my NT daughter's temper. They wouldn't think that meant I hate my daughter. But her temper is just a facet of her personality in the same way as autism is a facet of my son's.
So why shouldn't I detest autism sometimes?? Would you not detest something that makes your child frustrated and angry and upset, regularly?
Don't get me wrong, autism can be amazing and wonderful and downright awe inspiring, but it can also be painful, heartbreaking and isolating. I am blessed and truly thankful that it is 'only' autism Caidan has and that he does not have a life threatening illness, and for the most part, we are hugely positive about his autism, we embrace it, we want him to embrace it and to be proud of who he is, and we accept it. 100%. But that doesn't mean we have to love it all the time. Autism is not all rainbows and butterflies. Sometimes, autism sucks. It sucks big time. It can involve physical pain, both for Caidan and for us. It is horrible and heartbreaking to have to stand by and watch your child having a meltdown, not being able to help him or calm him, watching him kick, hit, scream and hitting his head. Most times, my husband and I still cry when it is over. It is the most helpless we have ever felt as parents. Plus, we have most likely been kicked and punched and we are hurting, both physically and emotionally.
So tell me, am I supposed to do anything else other than love my son and detest autism for what it does to him at those times? Because if I am, then I have failed as a mum.
So why is it so frowned upon for us parents living with autism, to sometimes feel and, heaven forbid, say out loud, that sometimes, we hate autism??
I have read a couple of excellent blogs on this subject recently so I thought I would get my tuppence worth in.
About 70% of the time, autism and I get along just fine. It's there and I am acutely aware of it, it's a bit noisier and messier than I'd like it to be and it doesn't understand as much as I would like it to, but that's fine, we can work on that. It belongs in our house, with our child and we make it welcome, we embrace it, we accept it as part of Caidan's and our lives. We work with it and we notice all the small and huge steps forward it takes and we celebrate every one!
However, that leaves 30%. Yes, about 30% of the time, I hate autism. I detest it with a passion. I wish it would leave our house and never come back. Those times when my son is in meltdown, kicking, hitting, screaming, hurting himself and unable to tell me why. I detest autism at those times. Those times when he wants to do something, like take his own jacket off and he can't, which gets him upset and frustrated. I detest autism at those times. Those times when he can't join in with other kids even though it is obvious he wants to, but he just doesn't know how to do it, and he gets frustrated and angry. I detest autism at those times. Those times when he is ill but he is unable to tell me what hurts or what is making him feel unwell, which gets him frustrated and angry and upset. I detest autism at those times. All of those times, I am unable to perform my primary function as a mother and help my child. Mainly because he either doesn't want me to or I don't know how to. That makes me detest autism too.
But let me make this clear. I detest AUTISM at those times. I do NOT detest my son. My son is so much more than just autism. It is not all he is. But it is autism that is making those times so hard for him.
No one would judge me if I said I hate my NT daughter's temper. They wouldn't think that meant I hate my daughter. But her temper is just a facet of her personality in the same way as autism is a facet of my son's.
So why shouldn't I detest autism sometimes?? Would you not detest something that makes your child frustrated and angry and upset, regularly?
Don't get me wrong, autism can be amazing and wonderful and downright awe inspiring, but it can also be painful, heartbreaking and isolating. I am blessed and truly thankful that it is 'only' autism Caidan has and that he does not have a life threatening illness, and for the most part, we are hugely positive about his autism, we embrace it, we want him to embrace it and to be proud of who he is, and we accept it. 100%. But that doesn't mean we have to love it all the time. Autism is not all rainbows and butterflies. Sometimes, autism sucks. It sucks big time. It can involve physical pain, both for Caidan and for us. It is horrible and heartbreaking to have to stand by and watch your child having a meltdown, not being able to help him or calm him, watching him kick, hit, scream and hitting his head. Most times, my husband and I still cry when it is over. It is the most helpless we have ever felt as parents. Plus, we have most likely been kicked and punched and we are hurting, both physically and emotionally.
So tell me, am I supposed to do anything else other than love my son and detest autism for what it does to him at those times? Because if I am, then I have failed as a mum.
Thursday, 6 June 2013
Worry? Of course I do, I'm a mum!
Worrying. We all do it, all us mums. It's a major part of being a mum. Those of us with children with autism or other special needs, well, we live on a constant merry-go round of worry, don't we? We worry about the future and what it might hold for our children, we worry about if they are ok at nursery or school, we worry about whether they will ever stop hitting and lashing out, we worry about whether our planned trip to Tesco will result in a meltdown (and that's just from us, never mind the kiddos!! ) We just worry about them, constantly. NT children bring their own set of worries too, obviously. Entirely different ones for the most part, but worries all the same.
I have 2 children, Caidan is my almost 4 year old, handsome, amazing son who happens to have autism. Kirsty is my beautiful, intelligent and funny 17 year old daughter who is NT. Funny thing is, it's the latter who is causing me most of my worry at the moment. Not for any bad reasons, she is an amazing girl and I am so proud of her. But there are good reasons for my worrying about her right now.
First off, yesterday, Kirsty passed her driving test. For those of you who have been there with your children, you will understand my worry!! Knowing she is out there driving and I can't protect her from the idiots on the road that should never have gotten a licence in the first place is really hard to take!! I am not worried about her driving, my husband assures me she is a very good and careful yet confident driver. But I can't control the others on the road, can I, so I have all these daft scenarios in my head involving police showing up at the door......I know these will fade in time but I can't help the worry at the moment!!
Then on Tuesday, she goes abroad to Magaluf for 2 weeks! All her school year are going (well, they have all officially left school now, which is what they are celebrating) and it will be a great experience for her. She has worked so hard this year, she deserves the break. But I am going to be a quivering wreck, drooling in the corner by the time she gets home!!
Then there is the worry of whether she will get the last exam pass she needs to get into her chosen University course. What if she doesn't? Is she going to be devastated? Will she just shrug her shoulders and find another course?? I don't know.
What I do know is that all these things are totally outwith my control, hence the worry!! It's a mum's instinct to protect her children and in circumstances where you just can't, well, I don't know about you, but it fills me with dread!! It's not about controlling her, I don't want or need to do that, but I have no control over protecting her. It makes me feel like I am failing her as a mum, which is really stupid, I know that, but it does!!
I doubt the worrying is going to stop anytime soon, if it ever will!! As I said to her, it doesn't matter how old she gets, she will ALWAYS be my baby girl and I will ALWAYS worry about her.
I am a mum, it's in my job description.
Yet despite all the worry involved, being a mum is the best thing I ever did, by a country mile. I am so proud of both my children. I am a very lucky lady. If not a huge, big worry wort!
I have 2 children, Caidan is my almost 4 year old, handsome, amazing son who happens to have autism. Kirsty is my beautiful, intelligent and funny 17 year old daughter who is NT. Funny thing is, it's the latter who is causing me most of my worry at the moment. Not for any bad reasons, she is an amazing girl and I am so proud of her. But there are good reasons for my worrying about her right now.
First off, yesterday, Kirsty passed her driving test. For those of you who have been there with your children, you will understand my worry!! Knowing she is out there driving and I can't protect her from the idiots on the road that should never have gotten a licence in the first place is really hard to take!! I am not worried about her driving, my husband assures me she is a very good and careful yet confident driver. But I can't control the others on the road, can I, so I have all these daft scenarios in my head involving police showing up at the door......I know these will fade in time but I can't help the worry at the moment!!
Then on Tuesday, she goes abroad to Magaluf for 2 weeks! All her school year are going (well, they have all officially left school now, which is what they are celebrating) and it will be a great experience for her. She has worked so hard this year, she deserves the break. But I am going to be a quivering wreck, drooling in the corner by the time she gets home!!
Then there is the worry of whether she will get the last exam pass she needs to get into her chosen University course. What if she doesn't? Is she going to be devastated? Will she just shrug her shoulders and find another course?? I don't know.
What I do know is that all these things are totally outwith my control, hence the worry!! It's a mum's instinct to protect her children and in circumstances where you just can't, well, I don't know about you, but it fills me with dread!! It's not about controlling her, I don't want or need to do that, but I have no control over protecting her. It makes me feel like I am failing her as a mum, which is really stupid, I know that, but it does!!
I doubt the worrying is going to stop anytime soon, if it ever will!! As I said to her, it doesn't matter how old she gets, she will ALWAYS be my baby girl and I will ALWAYS worry about her.
I am a mum, it's in my job description.
Yet despite all the worry involved, being a mum is the best thing I ever did, by a country mile. I am so proud of both my children. I am a very lucky lady. If not a huge, big worry wort!
Sunday, 2 June 2013
Middle aged?? When does it happen?
I am contemplating a birthday in the next 4 months that will finally see me nearer 50 years of age than 40. It got me wondering (those who know me are now facepalming themselves!) but yes, it got me wondering, when exactly do you become 'middle aged?'
It seems to me there are 3 categories of age. Young, middle aged and elderly. So when do we cross from one into the next? Is there some sort of transition period where you dip your toe in the water so to speak? 5 years grace before you fully graduate from one to the next? Or do you just wake up one morning having shifted from one to the other? If we go by the old 'three score and ten' adage, then middle age must begin at 35 years old? But it doesn't does it? So when then?
What about a dress code? Is there one? When you are in the 'young' category, you can wear whatever you like, no one thinks you are too old to be dressed in mini skirts or leather trousers (does anyone wear leather trousers these days?) But when we graduate into middle age, are we supposed to have some sort of uniform? Are leggings or jeans the acceptable way to dress? What about when we become elderly? Are we all to run/hobble out to buy crimplene trousers and sensible shoes and stock up on rainmates? Do we book in straight away for our blue rinse or can we wait a while?
All these questions running through my mind, but the main one being 'Am I actually now middle aged?' Do young girls in their 20's look at me in my denim mini and leggings and boots and think 'Why is that middle aged codger wearing youngsters clothes?' Do other people look at us 40 somethings and consider us middle aged?
I know when I was in my teens, I would have considered a 40 something as middle aged, but things have changed have they not? Apparently 40 is the new 30 and 50 is the new 40 etc. So has the cut off for middle age shifted as well? Are we looking at people in their 60's now and considering them middle aged instead of elderly? I look at my mum, who is 70, and I don't see an elderly woman. I see my mum, who has very few wrinkles and dresses in nice, modern yet tasteful clothes. So is 70 no longer elderly?
There is the train of thought of course that it is an individual thing. Some people look older than others of the same age, they dress older, they have older hairstyles. Perhaps it's how you look that determines when middle age begins? I just have no answer to my question.
What I do know though, is that I don't consider myself middle aged. I don't consider myself young either. I suppose I consider myself as a 40 something mum of 2 who is comfortable being the age she is and who dresses how she wants to, has her hair how she likes it and wears make up because she feels better with it on.
So I say 'Middle age? Move along, nothing to see here.'
What do you think? How do you feel about what determines middle age? Or perhaps you think these stereotypes no longer exist? I'd love to know your thoughts, so let me know in the comments.
I look forward to reading!
It seems to me there are 3 categories of age. Young, middle aged and elderly. So when do we cross from one into the next? Is there some sort of transition period where you dip your toe in the water so to speak? 5 years grace before you fully graduate from one to the next? Or do you just wake up one morning having shifted from one to the other? If we go by the old 'three score and ten' adage, then middle age must begin at 35 years old? But it doesn't does it? So when then?
What about a dress code? Is there one? When you are in the 'young' category, you can wear whatever you like, no one thinks you are too old to be dressed in mini skirts or leather trousers (does anyone wear leather trousers these days?) But when we graduate into middle age, are we supposed to have some sort of uniform? Are leggings or jeans the acceptable way to dress? What about when we become elderly? Are we all to run/hobble out to buy crimplene trousers and sensible shoes and stock up on rainmates? Do we book in straight away for our blue rinse or can we wait a while?
All these questions running through my mind, but the main one being 'Am I actually now middle aged?' Do young girls in their 20's look at me in my denim mini and leggings and boots and think 'Why is that middle aged codger wearing youngsters clothes?' Do other people look at us 40 somethings and consider us middle aged?
I know when I was in my teens, I would have considered a 40 something as middle aged, but things have changed have they not? Apparently 40 is the new 30 and 50 is the new 40 etc. So has the cut off for middle age shifted as well? Are we looking at people in their 60's now and considering them middle aged instead of elderly? I look at my mum, who is 70, and I don't see an elderly woman. I see my mum, who has very few wrinkles and dresses in nice, modern yet tasteful clothes. So is 70 no longer elderly?
There is the train of thought of course that it is an individual thing. Some people look older than others of the same age, they dress older, they have older hairstyles. Perhaps it's how you look that determines when middle age begins? I just have no answer to my question.
What I do know though, is that I don't consider myself middle aged. I don't consider myself young either. I suppose I consider myself as a 40 something mum of 2 who is comfortable being the age she is and who dresses how she wants to, has her hair how she likes it and wears make up because she feels better with it on.
So I say 'Middle age? Move along, nothing to see here.'
What do you think? How do you feel about what determines middle age? Or perhaps you think these stereotypes no longer exist? I'd love to know your thoughts, so let me know in the comments.
I look forward to reading!
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