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No idea

Posted by Sarah on Feb 26, 2013 in Uncategorized

It’s Beth’s birthday at the end of next month and I have no idea what to get her. I went to the shops yesterday and was looking around. I ended up getting some lovely patterned leggins but I’m going to have to get her to try them on as their exchange time is only two weeks. I bought some smelly shower gels that were on special at the body shop but I don’t know whether it’s worthy of a present. I would ask in places like Typo who said how good they are with teenage presents but there just wasn’t anything suitable. It was so obvious that she just isn’t like so called ‘normal’ teenagers. When Bridie turns 14 I will be able to take her clothes shopping and get her nails and hair done, she’ll like all sorts of weird and wonderful things. Beth would say she wants things but then not know what to do with them. They had nice jewellery holders to hang up on the wall but she doesn’t want her ears pierced and her jewellery just doesn’t last very well. I just didn’t want to tell the shopkeepers my predicament, a) because I don’t want to be the “I have a child with autism” mum and b) because most of them are young and really have no idea what difference it makes anyway. And c) I don’t want to make her sound abnormal, she’s still a teenage girl turning 14. I came home and googled her two favourite shows, Family Guy (highly inappropriate but hilarious) and The Office – the American version. There’s a line in The Office that Beth likes to say over and over again as she downloads the main guy Michael’s scenes. He says “That’s what she said.” For some reason Beth loves it. I found a birthday card which when you open it it says “That’s what she said!” She’ll love it. Or she’ll go off of The Office. Who bloody knows! Anyway, I bought it. I also bought her Stewie pyjamas, the baby character from Family Guy. I made sure they didn’t say anything too rude. I’m also thinking of buying her a Melways. She’s been reading maps at school and when she got a lift to school with a friend a couple of weeks ago, apparently she sat and read her Melways! It’s a good thing to learn. Last year she got a Dictionary which she uses a lot. We’ve got an Atlas, I wonder what other information books I can think of?

I have been writing more social stories lately, I’m thinking of putting a little ebook together. I wrote one for a friend for her son on coping with death and she has kindly written a testimonial for me which I will put onto my social stories page. Any suggestions for stories are welcome, I’m going to do a series of them. I did have the idea of making little cartoon movies, like one we watched many years ago called Tom’s Toilet Triumph. It’s very graphic and works a treat, put that in to You Tube and you’ll see what I mean! I approached the film studio that made it hoping that they’d realise what a discovery they had made in me but alas they don’t do discoveries of up and coming talent but said that yes, they could make it for me for $4000. I think I have to make them as stories first, then get discovered so I don’t have to fork out any money.

 
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Just plodding along

Posted by Sarah on Feb 19, 2013 in Uncategorized

Nothing much has been going on here. We’ve settled in to the new year at school without a hitch. Beth seems much happier this year and also a bit more organised, she comes out with her hat on every day when I pick her up whereas last year she kept forgetting it was even in her bag. She’s bringing notices home and tells me about her day. Mind you, I had signed a slip for a circus workshop that she was to do, I had forgotten the date and kept asking Beth if she had done it. She would tell me in a monotone voice (as if to say piss off mum and stop asking me questions) “No, not really.” which is often a stock standard response. She figures it’s longer than just saying no, therefore qualifying for a lenghthened answer. Her yes answer is “Yes of course”, also a sentence, therefore not needing any more elaboration. I was going through some papers on the weekend and found the one for the circus, it was in fact last Monday. Clearly it hadn’t impressed Beth that much who really couldn’t be bothered saying anything about it and couldn’t remember exactly what she’d done in it.

Beth did have a problem with her attitude at school on Friday. I was waiting in the foyer and one of the aides came out to tell me that Beth had been really rude to her. She was meant to stand in line to walk back from the other campus but, being the Queen that she is, obviously didn’t want to walk on such a hot day. She also wanted to make sure that everybody knew it by whinging and putting her hand right in the face of the aide who was trying to ask her to step back in to line. She then spouted her now typical line of “I’m thirteen and you can’t tell me what to do, I make my own decisions.” I’m sure you can imagine that she wasn’t impressed when the ipad was banned for the rest of the day. I had pleading, I had “it was an accident” I had “But I’m sorry, there I’ve apologized, now you have to let me play on the ipad.” I even had the old “Yes Beth, now you’ve apologized, of course you can have the ipad back sweetheart.” I was happy to see when I got home that, being a Friday, there were a few kids movies on tv that night as I had also banned her from dvds. Technically it was just watching tv and my night wasn’t a complete disaster! The good thing was Beth going in to school yesterday apologizing to her teacher. Sometimes you have to do the hard yards to show that you mean business.

Other than that Beth’s been pretty good. We had friends over on the weekend, one friend has tattoos on both of her arms. When we saw her at school yesterday Beth came over and gingerly stroked Jo’s arm, asking about the tattoos. She was particularly impressed with the red queen and the cheshire cat from the Johnny Depp version of Alice in Wonderland. She asked Jo where the caterpillar is and Jo said she wanted to get him but hadn’t gotten around to it. She asked Beth where she thought she should put it and Beth chose a place on her arm. “There please.” It was like putting in an order! Jo was impressed at how gentle Beth was being, as if she thought the tattoos were still hurting.

I have had a bit of interest in my social stories lately which has been very exciting. I’ve decided to put a few little eBooks together and sell them online with five social stories in each. I’ll let you know when I’ve done this. Any suggestions for social stories that would help would be terrific, I can do them on any subject.

I’ll leave you with a Beth funny. I was watching my soapie Bold and the Beautiful last night. It was a very emotional one as it was the one where Stephanie finally died. She’s been dying for a while now and every episode for the last week I’ve braced myself for her eyes to shut, thinking that it’s time, then she’d wake again. I knew it was time last night as Brooke sang When Irish eyes are Smiling. I embraced the tears, glad that I didn’t have to dread the moment now that it was here and enjoying the true soapie tradition of the long drawn out death scene. Then I heard Beth’s voice from the bedroom at full blast “We built this city, we built this city on Rock and Rooooo-oooolllll”. At least it made me laugh! I’m sure there’ll be more sad scenes tonight to compensate!

 
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Video

Posted by Sarah on Feb 9, 2013 in Uncategorized

I just wanted to put a link on here of a video that was done probably two years ago now. It was done for a church group to show to kids about autism and how it’s not the scary thing that it’s made out to be. They wanted to show a child with a disability and one without and how they could be friends despite the odds. Beth’s friend Jessica came over for a play and to go to the park and this is the result :

Beth and Jess

 
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A huge response

Posted by Sarah on Feb 7, 2013 in Uncategorized

My last post regarding parents who don’t have children on the spectrum, but seem to want them  has clearly struck a nerve in a lot of parents. I’m going to share some of the comments I got when I put the link on Facebook.

S said : Love it! Well said and good on you Sarah. I totally agree… it is so hard when other people don’t see what you see. Don’t feel what your child feels. Question your parenting skills…tell you to go home and learn to deal with your kids behaviour. Tell you that the kid is good looking so what are you talking about. xo
J said : Well said & needed to be!, there is few of them that try it on, perhaps if they spent a day in your shoes then they would know how much their pushing for labels hurt’s those children & families dealing with it on daily basis, before they pump parents for ideas or ways to put things they should step back & realize they are not hurting themselves yet the child in the middle or families whom are waiting for appointment that they took who’s children’s really do need it!, I know we’ve spend well over thousands to get our daughter the right diagnosis, the people whom attempt to try it on make me feel ill not for them but their child/children. This then quickly turns slightly to anger too for the child/children as a growing body such as child needs rest a diet to support a growing body & who’s parent love them regardless of a label the parent/parents seek of for their own gain, or to sit with a child with that condition & listen to their aspiration’s every night knowing they might not be able to reach them yet still supporting them to go for it. It’s every parents heartbreaking moment, yet to them it’s a validation a victory which it’s not. As parents we love our children regardless of what they may/may not have. We see just our children yet to some all you hear is oh this or oh that. Do they even have a clue as to how much even on a meek or mild side of the scale it hurts and burns to hear those words? To have relationships (family, friends, romantic) lives torn apart or to watch siblings go thru it too? Or the feeling of being so alone? I think not, its a gain for them but lie as they may time has funny way showing the truth as they will learn hopefully for the kids sakes the wake up & step up for their kids. 
R then joined the conversation and wrote  : They also forget the impact on their children’s future, what if them insisting on a label that isn’t there makes it so they can’t get the career they want when older like the police force or army, they forget or maybe don’t care that this label follows that child around for life. How could anyone want to watch their child miss out, be left out, struggle so much that they even say they want to die cos it’s too hard, I feel sick to know that there are people that want to pretend that’s what they live when they don’t, they might as well spit in the face of a true parent of a child with autism cos thats basically what their doing. I feel sorry for them that they feel they need it but quite frankly I would quite happily give up the health care card, the school funding, the knives to my throat, the yelling, the holes in every wall, the being unable to go anyway on family holidays, day outs, the break down of your relationship that suffers so much, the lack of sleep my god the list can go on, the fact they can’t even go to school, they can have that if I can pass it on and be left with a child that doesn’t do any of that, they can have it and see if they really want to live the life, I luv my son but I hate what Autism does to his life and mine and my other children. Well written Sarah and about time it was said.

I also had people writing in disbelief that people would actually do this but time and time again I have seen it with my own eyes. I got emails from readers who felt that they had to let me know how they felt.

M wrote :

It’s a catch 22
You didn’t have to prove to anyone your Beth is on the spectrum but now you have to live with the fact you didn’t have to
My Beth had to go to another specialist because sunshine hospital could not see autism . Funnily enough the second specialist couldn’t believe they did not see it straight away.
The only thing that keeps me sane  is , we know what our Beth’s need and that is all that matters because we are the ones that love them through thick and thin .
You are a great mum that is all that matters.
We live with our choices every day . Our Beth’s thrive because we are their mums.  Concentrate on what you can control . forget  about others who have no idea what it really is to be a mum of a special child!!!!!!
Absolutely M, that is what it’s all about, enjoying our kids for what they are.
C also wrote to me to tell me about her sons :

This is the first time that i have had the desire to contact you as i am so astounded that anyone could want,  let alone set up their kids to get a diagnosis. i have two boys on the spectrum; 1 a 4yo severe non verbal autistic boy with global delay and a 7 yr old with Aspergers and ADHD.( i have real issues with the attached conditions, but thats another story) Both my kids have major sensory issues that complicate their daily lives.
I, too, have occasions where i doubted myself in having my aspy boy formally diagnosed as i,too, don’t like labels and have had instances where people have not given him a go or chance because he has it.  (the predudice and uneducated of the world,) and we even had trouble getting him into primary school.
 
i have had people, too, question my reasons as he is smart or doesn’t look ASD ( oh boy thats my favourite) and like you, not once for his little brother. and yet when he comes out with a one liner or tells it how it is (political correctness, doesn’t exist here)is insensitive to someones situations, melts down over undies or socks/shoes. Wont walk into a social situation  Or will not forgive those that have the  broken social rules he has formalised. How quickly they forget and see him as a sulky rude boy.
 
On the overall  l am glad we have had the diagnosis, it has given me more patience and a different way of looking at things.( 8/10 meltdowns or arguments are Aspy related the other 2 are him being a 7 year old boy.# i just need to find the trigger*  I have better understanding of who he is and even who i am. I have believe that as he gets older and into his teens he will he a stronger sense of identity for it, know why he see’s the world and does  the things that he does. Know his weaknesses and have the tools to make a difference.
the extra assistance from the government, that doesn’t get you crap. Not enough for what they really need so why would anyone go thru the anguish for the token pennies.
 
As for your new friend i found that when you have a new diagnosis it consumes you and you cant help shout to the world but you learn to keep your own council and only when it truly matters (its in your aspy’s best interest) you say anything. And trust your own  judgement, because it is what we do as their parents not what others say that will make difference to the worlds the live in.
I even had my darling Daddy send me one of those lovely emails with pictures and sayings on them, saying his favourite (which was mine too) is “You’re too blessed to be stressed,” good words to live by.
Anyway, enough about that! I just thought it would be good to share how it affects other parents.
Beth’s having a good week this week, she’s enjoying going to school which is a miracle in itself. She’s been doing some really stupid things though which frustrate the hell out of me. She went to see Rise of the Guardians with her dad Paul on the weekend and has decided that she’s in love with Jack Frost. He is kind of cute! As I didn’t see the movie I don’t know much about him at all but she’s decided that she doesn’t fancy Ethan from Ice Age 4 anymore (just as well, don’t know how we’d fit a mammoth into the house) and wants Jack Frost instead. I of course am supposed to know all about him too. She keeps saying that she can change and be like him, that if she does what he did she can be a guardian too. The other night (just as well she repeated it to me) she was talking about kissing Jack Frost. He must have cold breath. She said they could put their cold breaths together when they kiss! Last night however I was not impressed. Beth went into the kitchen and was ages. It was about 10.30pm and I kept dropping off to sleep so I hadn’t noticed how long she was. She told me she had three glasses of water, then about five minutes later she complained of having a tummy ache. (Apparently Jack Frost drank three glasses of water). Next thing she’d projectile vomited all over the side of the bed, all over the floor and her magazines. Luckily they were old ones and could be chucked out. She knew it was her own fault as she kept apologizing. As a general rule I don’t like the word stupid but I told her it was a stupid thing to do and she agreed.
The other stupid thing she did was a few days ago when she stuck her finger into the cigarette lighter in the car. She knew she shouldn’t do it, she knew it was stupid yet she still did it. My Bill clearly thought I was being a real bitch because he carried her bags in from the car and ran her finger under cold water instead of like me saying “It serves you right for doing such a stupid thing!” She’s nearly 14, when is she going to grow out of these things?!!!

 
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Photos

Posted by Sarah on Feb 3, 2013 in Uncategorized

Sorry again, the last post didn’t work with the photos. Here they are! More to come xxSarah O'Connor 161 Sarah O'Connor 062 Sarah O'Connor 192 Sarah O'Connor 064 Sarah O'Connor 039 Sarah O'Connor 008

 
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Do they or don’t they?

Posted by Sarah on Feb 3, 2013 in Uncategorized

Once again this week I’ve been thrown into the confusion of why parents seem to want a diagnosis for their children if they don’t actually have autism or aspergers. I know I have spoken of this several times before but I still find it a hard concept to wrap my head around. I have become friends with a lovely lady who I wont go into too much detail about but suffice to say she’s doing it tough. She’s an amazing mother and two of her children are on the spectrum. One has aspergers and one has autism. She has been in the situation where people have questioned her as to whether her aspergers child truly has it as they are very high functioning. I believe that she does, I haven’t necessarily seen the signs myself but I have gotten to know this lady well enough to know that she doesn’t want to label her child unneccessarily and that it was suggested to her, unlike the mothers who I speak about above. Usually (from experience) ‘those’ mothers research and ask many many questions of parents with kids on the spectrum so that they know the right things to say at their appointments. Now I know that assessment is also based on the child itself but if the child is very young it is often based on what the parents tell the specialists. Often (and I know) these parents fill their kids full of sugar before an appointment or keep them up ’til all hours so they are tired. They may send them to school too early in their lives so they are always behind in their learning, proof in their minds that they have issues.

I have met several ladies who fall into this category. Of course I’m no expert but from what I’ve seen of these kids they’re just not on the spectrum. If they are then my Bridie is and I’ve had her tested so I know she isn’t! It dawned on me last night one of the reasons I find this so difficult. Why I don’t cope with parents saying “You should see them at home, it’s not always apparent but they do this and that at home”.  Or when Bec and I will be talking about our kids extreme behaviours and one of these parents try to empathise as if they knew exactly what we mean. I realised that I find this difficult because nobody has ever thought that about my Beth. Nobody has ever said “Are you sure?” Nobody has ever questioned my right to have a diagnosis for my child because it’s so bloody obvious. And I find myself in tears even writing this, even though I’m ok with it, even though I love my Bethie with all my heart, just the way she is. And I feel for my newfound friend who, because of all the charlatans out there before her and alongside her are making people doubt her parenting and questioning her motives when all she wants to do is be a good mum to her kids. And saying things to her like how it’d  be easier if their kids were on the spectrum, then they’d get more assistance. Don’t wish your child to be on the spectrum. Don’t wish your child to have anxiety, fear, no friends and dependance for the rest of their lives. Love your children for what they are, aspire for them to be the best that they can. How dare you try to capitalize on something that can be so debilitating, to the child, to the parents, to the whole family. How dare you.

 
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A good start to the school year

Posted by Sarah on Feb 1, 2013 in Uncategorized

Beth has had  a good start  this year. It’s  so nice to not be one of the new kids for her, or in my case, one of the  new mums. She loves her new teacher and she came home with some  work she had done on Wednesday, her first day. I reckon it’s the best writing I’ve seen  her do. It was  very cute, she  had written about what she did  in the holidays and  drawn pictures to show what it was. One was going to see Wreck It Ralph which we took her, Bill and four  other boys to see for Bill’s birthday. Then they came home for a night of sleeping in the lounge and Austin Powers movies. I don’t even think I have to paint a picture here! Anyway, Beth wrote about that movie and how she wants to see Rise of the Guardians. She also wrote about  how  she had gone to see ponies and all about them, it sounded fantastic  and maybe it was just me who realised that it’s a fantasy from My Little Pony! Anyway, she did a really good job. Bill and Bridie were in the car as they didn’t start until the next day, they were so complimentary, both of them talking about how good  her writing was, how straight her ‘I’s were. Bill  even went so far as to say  that JK Rowling would be jealous of Beth’s  writing abilities! They’re such gorgeous kids. I was  pleased to see  Beth waving goodbye to a friend, the first time I haven’t had to elbow her to say goodbye to somebody  who was saying it to her.

We had our photos done last  week. The photographer was terrific  and excellent with Beth. The job was  to get Beth not looking quite as autistic as she can  often look in photos. I don’t mean that in a bad  way, she just doesn’t know how to naturally pose and puts  on a funny smile when  she poses. She also likes to do the finger thing in Star Trek and now in the Big Bang Theory, you know the one where  you separate your two first fingers with your two last fingers, I think the saying is “go forth and prosper.” Those shots made it which  I was glad of, that’s  who Beth is after all.

I went to my very first assembly  at Beth’s school this  morning. They have a lovely tradition which  I didn’t know about. They got everybody up whose birthday was in January, they all lined  up (including a teacher) and the rest  of the school had to put them in age order as they said their ages. Then they clapped up to the first birthday which in this case was seven. When  they got to seven the seven year old had to say what they wished for. Then we’d clap up to the next age  and so on. Most of them said they wished for a good day. One boy, bless his heart, said  he wished to be a lion. I must make sure  I’m there for Beth’s, she no doubt will go into a spiel about Hollywood or Disney, in a dramatic accent!

 

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