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Feeling positive. May 25th 2016

Posted by Sarah on May 25, 2016 in Uncategorized

I took Beth to the media school that I have talked about in previous posts. I picked her up early from school and we had a 3pm appointment. The first thing I noticed was that it’s not terribly big. It’s in a group of businesses in a row, the type that has parking in front of each one. I think both Beth and I were expecting a school type of place, or even a place like Irabina (early intervention) was with lots of rooms off of corridors. This was a big room that you first go into with a few smaller rooms off to the sides. There was an animation room (they had Gumby) and a room they do they TV presenting from. There is an animal lovers group. Next year there will be a radio announcing group. They have a creative writing group. All sorts of things. The kids (I know they’re not kids anymore but I think I’ll always call mine my kids) learn and organise their day first, as in writing their script for the tv presenting. They can have their own little segment and it was quickly caught on that Beth’s segment would be on – drumroll please – Disney! She seemed rather keen on that idea. If they are doing the tv presenting then they also learn how to do the filming and the sound and all the other things that go on behind the cameras. If they do the animals then they do excursions once a month, then spend the other 3 weeks making something to do with the animals that they visited. Or making money to help certain animals or organisations such as the guide dogs. The activities are for the whole day so if it’s something that Beth is interested in she doesn’t have to dread part of the day, just look forward to what she’s doing.

I was so impressed and James, the driving force behind it all was fabulous. He was so enthusiastic and said he grew up with his mum being involved in organisations with disabilities so it’s always been in his nature to enjoy kids like ours. They even do travel training. So (eventually, and I mean a long time in the future) I could potentially pop Beth on the train to get there. It’s very daunting but at the same time seems that it could be manageable one day. I could go with her on the train so that I can remind her where she gets off each day. Then eventually they said that some parents put their kids on the train and sms them the carriage that they’re in. Then the staff are at the station to pick the kids up. It’s not far from Ringwood station and they either walk or if it’s raining they will drive. Of course I’m anxious but I could even follow her for a while to check that she’s looking out for the station. As they said we’re talking a year or two into the program. Good to think about anyway.

As we don’t have the futures funding yet we can still access their services now but pay ourselves. So we discussed this and said that it would be good for Beth to go one day a week to try out all the things they have to offer. She could try something different every week. This would be about $75 per day so once a week would be manageable. That way she will transition and once we get the funding when she’s 18 she can choose the subjects she wants to do and she’ll already know them.

I spoke to Beth’s teacher last night and we discussed the whole rewards system thing. She agreed that she would let Beth read after lunch if she had cleaned up after herself to the teacher’s standards. She came out with Beth to explain what a good job Beth had done today and how she got to read a book this afternoon. And Beth looked proud as punch, so chuffed to tell me what a good girl she’d been. So so far so good, it seems to be working!

 
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ASD Clinic

Posted by Sarah on May 16, 2016 in Uncategorized

I went to the ASD clinic in Kew this morning.  Those who read my blog regularly know that I’ve been petrified of the whole adult thing with Beth. I almost pretend in my mind that it’s not happening as it’s such a scary prospect. But, as you know, things have come to a head lately and it’s time to get my head out of the sand and to admit that she is growing up and that I need to be ready for school finishing and either other training or working happening. Oh My God!

I look up Richard Eisenmajer because I have been to see him talk and I find him amazing. He works with adults on the spectrum and I thought it was about time that I dealt with Beth’s issues as a 17 year old going on to adulthood. If I am going to develop a working relationship with myself, Beth and a professional I don’t want it to have to be cut short when she reaches 18. I saw Laura Addabbo. I was so impressed with her. She just ‘got’ our issues. When speaking about things such as Beth’s organisational skills (she basically doesn’t have many) or her ‘I am a queen’ attitude Laura nodded and said that’s really common for people on the spectrum. She said that they need motivation, if there’s nothing in it for them then why would they bother doing it. That is soooo Beth! I was explaining about teaching her to do things such as folding towels, a pretty easy task. She hates it. And all the other things I am getting her to do. Again, if there’s nothing in it for her, why bother.

We discussed her attitude at school. About how there needs to be a link in with me so that behaviours are rewarded with the things she wants at home. The teacher she has this year is very open to me being told if Beth’s behaviour is bad, so that Beth knows that the consequences will be followed through with. But instead of doing the negative as in losing tablet privileges, make it positive such as a sticker chart or money to go towards a magazine at the end of her week. And of course when she said this I said inside ‘bloody hell, I knew that, that positive consequences work better than negative, why haven’t I been doing that?!’

We’ve also booked in to see a new paediatrician in Camberwell. Mainly because they have been recommended as knowing what they are doing with ASD kids and they come recommended. As far as Beth’s medication is concerned it was suggested that I see a new paed before she turns 18 to talk about her medication. She hasn’t had a review for a couple of years, there is room to move as far as amount and type is concerned. And, as Laura pointed out, Beth’s sensory issues could be worse if her medication isn’t at the right dose now. I’ve made an appointment for next Monday for us.

I’m already dreading tomorrow morning. Beth went next door to my inlaws house while I went to the first session with Laura. I went to pick her up and Bev (my mother in law) told me that Beth is complaining of having a sore throat and a tummy ache. I’ve told Beth that that’s not the way it’s meant to work, that she has to go willingly on the days she is going or we’ll have to do something else. That we’ve already got Wednesday off this week for our family trip to see Sound of Music on stage. The reality is though that she is the way she is and she can’t help how she feels. I will have a meeting with her school about not only the positive rewards but about the behaviours that we will be rewarding, such as leaving that boy alone that she has an issue with. I think I’ll also do a social story to try and help it along. Who knows though, it may be too late.

Anyway, I’m feeling much more positive this week. Even though I pooped myself driving on the Eastern Freeway! I feel as though we are moving forward slowly, and we have a direction to go in. Let’s hope it’s a positive new start. Hopefully if I can get things a little sorted, she’ll be all ready to start her transitioning to her future by the time she turns 18.

 
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Feeling better today

Posted by Sarah on May 12, 2016 in Uncategorized

What a difference a day makes! I’m feeling much more settled about things today. I spoke to Beth’s school yesterday afternoon. We’ve come to an arrangement that she is going to go 3 days a week. We’re going to look at the Your DNA media school in 2 weeks. They have said that they are pretty full at the moment. I found out that we don’t get the futures funding until she turns 18 anyway. The funding is for young adults who need extra help to train for an eventual job. Now that the school is aware that she isn’t happy and that we’re looking at other avenues, they’re going to start the ball rolling on the funding application. Then when she turns 18 in March next year she can go to either the media school or another type of training centre. She’s open to all of this and seems to be much happier since I told her that’s what we’re doing. Let’s see how she goes next week though. It’s easy to be happy when you’re still at home!

I’ve told her that she’s going to start doing jobs around the house on the days she’s home. I think it will be really good for her to learn to fend for herself somewhat. Today she’ll be picking up the leaves in the back yard. I’m going to teach her how to do washing and make her own breakfast and lunch. And put the clothes away. And, something she’ll no doubt hate, she’s going to go to a personal trainer! I went to the gym this morning and spoke to them about her. They said their exercise physiologist would be the best bet. I can claim 5 sessions with him under the enhanced primary care. He said he has worked with people on the spectrum before. Beth has really low muscle tone and poor gross motor skills. So she can come with me when I go and she can have a one on one session with Ben. I’ve told him the 2 things he’ll have to watch. One is that she’ll be very resistant to doing anything he tells her to do. The other is that she will probably ask him out! Watch this space to see how we go!

 
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A shitty time

Posted by Sarah on May 11, 2016 in Uncategorized

I’m feeling rather flat at the moment. Beth is refusing to go to school. She doesn’t seem to know what the problem is, she just hates it. Every morning she tells me she’s sick and this morning she nearly vomited with making it look like she was. She coughs and sniffs and sits on the toilet for ages telling me that she’s got the runs. She cries and yells and pleads and I just don’t feel like I can do it any more. I can’t keep sending her somewhere where she has no friends and it’s making her miserable.

I’m going to call the school today. There are packages that you can access that help with transitioning to training that will help with future employment. I know we’re told about them in year 12 for the kids that are leaving after finishing their studies. Apparently you can access these though once your child has a pension. So I’m weighing up our options. I don’t even know if this will make her happy but she can’t be much more miserable than she is now.

I’m also going to see a psychologist at an autism clinic on Monday. I’m meant to be going by myself first so if madam is home I guess I’ll just have to take her with me. The plan was to discuss her queen attitude, the one where everybody has to do what she demands. The one she has at school. Now I guess I’ll be talking about what’s next for her.

I’m thinking that, for her anyway, going to special school after mainstream wasn’t such a good thing after all. I feel like she either should have been in special all along or mainstream. Being in mainstream meant that kids pandered to her a little because they had that filter that stopped them from being annoyed by her, or at least showing it that much. Similarly having an aide meant that she wasn’t independent, something that shows up so much in special school. She’s a bitch to the other kids because they don’t do what she tells them to do. Then she says they are bullying her which probably has some truth to it. But is also probably in response to her treating them like shit.

A friend has a daughter in the same situation. She’s at home all the time now because of school refusal. What the f do we do with these kids? I don’t give in, I don’t let her play on her tablet when she’s home and in fact I’ve told her today that she needs to help me with washing and cooking and cleaning. I’m not a bad parent! But I feel so bad at the moment…

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