The Circle

[Arashi222]

Kelly: I am sorry to hear that things have been going so roughly. It would seem that you are doing everything you can to help your daughter she is so lucky to have you guys. You're daughters complaints about uniform clothing is the reason I was allowed to go schools that did not require uniform. I get the same way. I have to rant when I get into the car...like I tried to hold in what happened with this customer about not liking me and my mom had to talk me down and I'm 30yrs old. I can remember being your daughters age. She is so lucky that she has you.

There is a reason why I always have Wednesdays off from work. If I didn't have a particular day in the middle of the week I would loose it, I wouldn't be able to function. The store gets so overwhelming at times I have to run to the bathroom just to calm my self and play with my bracelets so I completely understand.I hope things start to get better. How is going through the GP going? Are you going to get her retested for AS? In my personal professional opinion she has AS, but she is female and we still struggle to get diagnosed.

As to the dress I am having a dollie sized Gypsy renaissance dress commissioned most likely from Beyond Wonderland. That will look something like this the woman in the middle Candice Night:

yes you're daughter is important but I do hope you get that outfit you have you're eye on. Maybe it will go on sale or something

I wish that were the case Kelly. But they don't really want to loose his business. I don't know. My assistant director said that if he bugs me again she will put a stop to it but....she's never around when he does weird stuff. He stares me down he purposely targets me. I am nice to everyone and was nice to him until all this stuff started. Now I just want him to leave me the hell alone. It worries me a bit, but I know in my heart I am not going to give up in pursuing getting rid of him from the store.

I am actually going to renaissance festival this weekend and am a bit worried a bit overwhelmed and excited. I can't find my shawl I wanted and last year I borrowed a corset from my ex-friend so now I can't go with a corset this year. So I have to buy one when I get there which is fine I needed one but still....I can't find my shawl to keep the sun off my skin while I am wondering around the fair. We're having a doll meet out there now I am not bringing a doll way to dusty but I am now worried that my ex-friends are gonna be there too. I hate that I always have to worry about that. My newer friends haven't yet seen me in the freak out freak out mode. I worry I might freak on them at the fair...which I will try not do. I generally fit right in at the fair...sigh...I am worked up over it and its not til Saturday.

 

[Kelly]

@Arashi - I don't think there are any schools that don't require uniform around here, it used to be alot more strict when I was young, we had to wear really stiff shirts, a tie, cardigan, pleated skirt, knee socks and very specific shoes. Wheras Kyoko can wear any type of skirt/pinafore/trousers/cardigan as long as it's navy blue, grey or black but she has to wear white polo shirts or the old style shirts. It will be worst when she goes to secondary(high) school as they HAVE to wear the school blazer and tie regardless of the weather, I had to do that at school, only the really nice teachers would let you get away with taking your blazer off in the scorching summer months.

Getting her diagnosed has just been one complete farce, I asked the GP to refer her to the autism clinic I went to, she was happy to do so. We got a letter from the clinic saying that we are outside of their catchment area and they would send the referral on to our local children and adolescent mental health service(who she is already being seen by). So I phoned up asked wth was going on when I was diagnosed earlier this year there so how can we be too far away. The woman I spoke to explained that they were also a CAMHS unit and that the GP hadn't specifically said why she had referred her (after I moaned about her needing to go there specifically for an autism assement), so she told me to speak to my GP again and have her send another referral stating clearly why she wanted her assesed. I phoned her up the GP was gobsmacked because she had specifically stated that she wanted Kyoko assesed for Asperger's and she included the autism tests I'd given her (childhood AQ etc) so she was at a loss as to how she could be more specific then that but she agreed to refer her again and spell it out that she wanted them to assess her for autism, giving several reasons why.

In the meantime Kyoko's play therapist asked to speak to me and she brought up the referral to the autism clinic, basically asking why I'd done that when they did autism assements there. So I explained that the psychiatrist we saw in May was very dismissive about autism, referred Kyoko to an occupational therapist, to the play therapist for her hospital fears and had stated in her report that she did not need to see us again. The play therapist then proceeded to tell me that the psychiatrist has her noted as borderline asperger's and is just waiting on the school's behaviour report before she proceeds with an ADOS assement. I almost exploded with rage and asked why the heck she didn't just tell us that instead of making out that she didn't need to see us again and that all we were being offered was the OT and the play therapist, from our point of view there was going to be no attempt at assesing her for anything.

Then a few days ago I got a letter that was directed to my GP (but they always have to send copies to the parents and any other doctors/psychs etc she is seeing)...anyway it says and I quote

"Thank you for your letter dated 24/8/12 regarding our advice re Kyoko.

Our advice that Kyoko should be seen in *town name* was not due to a misunderstanding. There is no longer an Asperger's team at the clinic and we are unable to offer Autism Assesments specifically. The services offered to adult patients are not the same as for children and I am sorry if Mrs *my name* was given the wrong advice.

Our collegues in *town name* will offer the same types of assement and therapy as we do, based on the child's needs.

I am sorry that we cannot help further."

Outright lies! The woman I spoke to first said they were not taking on any new cases, when I explained the situation with me having AS and that I thought Kyoko did too, she then suggested I get the GP to refer her again stating specifically why she needed the assement as it did not mention anything about asperger's/autism. Plus it's a lie about them not having services for children, when I went for my own assement there were a number of families there and it is called the *name* family clinic, because I did wonder what was going on as it seemed I'd been referred to some kind of family therapy clinic instead of an autism diagnostic centre, but I found out that it was both.

I just can't believe the lies, vagueness and stupidity of some of these people. Even the play therapist annoys me because everytime she says "have you made an appointment for her to get the scans done yet?" and every single time I say no because the GP feels it will be detrimental to her mental health to get them done right now and we need to find a solution for keeping her calm during it first. It's like she thinks I'm making it up just how bad Kyoko reacts in that environment, she can't even talk about it without covering her head and rocking and screaming at me to not talk about it. Next time we go I'm taking a camcorder to record the whole thing and I'm going to make a dvd for all these idiots to watch and then come back and suggest we "just get on with it, stay positive and she will be fine".

I also need to speak to the headteacher to find out why they haven't done her report, we gave them the request at the beginning of July, I also gave her the OT's forms to fill in last week and I doubt they've done that either. It's holding everything up, the OT wants to get in asap to asses where Kyoko needs the most help with sensory issues in school but she can't until all the forms have been completed.

The whole thing makes me want to scream, these people are totally failing to help Kyoko the only ones who have been supportive and tried to help have been the GP, the OT and a play specialist at the hospital, who last time we went I told her in confidence that Kyoko may be on the specturm and she went out of her way to make sure certain things were right (like making sure a specific nurse who upsets Kyoko wasn't there, found a really happy smiley child friendly Dr, scoured the dvd's in a few departments to find the specific one she wanted to watch, lots of little things like that).

Kyoko's first musical theatre class went well, she's been put in the 'high' group as her voice is quite high and she was apparently very good at improvising a shopping trip in the mime part(we ended up playing out her entire lesson with her monster high dolls whe she got home). I didn't go and pick her up as I felt a little sick yesterday so my husband and mother in law went and geez is that woman negative! Normally I really like my mother in law but she has been so negative about this whole performing thing that's it's really been getting on my nerves. Example I was talking about the west end performance and her exact words "Oh it's probably just some stupid little panto or something" I had to bite my lip and through gritted teeth remind her that Kyoko and her class will be assisting in a major performance, currently it's the phantom of the opera but I don't think that's what they are doing in Feb. I also had to remind her that it was a professional threatre she'd paid alot of money to get tickets to go and see something (I forget what, think it was les miserable). Then when they got back I was asking Kyoko how it went and she was really happy saying it was awesome etc and MIL was saying "oh yes but she looks very tired, maybe it's a bit too much for her". Once she left my husband was fuming telling me all the crap she'd come out with about how Kyoko will probably get bored with it and in the car she was saying stuff to her about how not to get too serious about it that it's just for fun, it's very hard to get into that kind of industry etc...geez crap all over someone's dreams why don't you!

We've talked this through with Kyoko how it's hard to make it big but if she tries really hard then who knows, thing is Kyoko will be just as thrilled having a couple of lines in a local play as she would starring in a hollywood blockbuster. It's just something she really enjoys and if she can make a carreer out of it then good for her and we'll encourage her all the way. I think my husband was more upset then anything because he had to grow up with his mum not encouraging him, I can't imagine how crushing it must be to have your mum think everything you do is a waste of time, my parents always encouraged every little whim I had. Anyway yeah sidetracked a little lol my point is we are trying to encourage Kyoko so much and MIL is just the total opposite, I'm having to resort to telling Kyoko that granny is just worried incase she doesn't like the other kids or gets stage fright or something(Kyoko finds this absurd and even said "but I LOVE being on stage why would she think that, she's silly").

The dress is already on sale that I want but really I can't afford it right now. I really like the look of the dress your having made, same colours and everything?

Has that guy been in anymore? How often does he come in? Does there seem to be any kind of pattern to when he shops? Like most people get shopping around payday or at the weekend. Or is it totally random when he comes in?

Your going to be fine at the festival, your going to have a great time with your new friends, your old friends will be jealous and your going to look amazing. I know that's not really going to help because you'll be worrying anyway but that is how the day will go and so what if you freak out about something, your friends will be there to support you and I'm sure by now they are very fond of you and won't think anything of it.

Well that was an epic post :bounce: speaking of which new gears of war next year....I am very excited!

 

[Soup]

Kyoko sounds like such an intelligent & deep little girl! I'm glad you & your husband don't think her desire to perform is silly. She seems driven & like she knows what her interests are & what she wants to do. Many adults lack that sense of direction. She's sure to succeed with that attitude & you guys doing all you can for her.

 

[Arashi222]

@Arashi -The dress is already on sale that I want but really I can't afford it right now. I really like the look of the dress your having made, same colours and everything?

Has that guy been in anymore? How often does he come in? Does there seem to be any kind of pattern to when he shops? Like most people get shopping around payday or at the weekend. Or is it totally random when he comes in?

Your going to be fine at the festival, your going to have a great time with your new friends, your old friends will be jealous and your going to look amazing. I know that's not really going to help because you'll be worrying anyway but that is how the day will go and so what if you freak out about something, your friends will be there to support you and I'm sure by now they are very fond of you and won't think anything of it.

Well that was an epic post :bounce: speaking of which new gears of war next year....I am very excited!

Kelly: First of all I just want to say that is just silly how they are treating you and your family what is important is that Kyoko gets the help she needs. I cannot believe how they are acting do they think you are just putting this stuff on your child? Or something? I personally think this whole game they are playing with you are is just stupid (*shakes head*).

You're little girl is so lucky to have parents who believe in her no matter what. You guys just don't get discouraged. I hope that everything with the school involved gets straghtened out.

Oh...that stinks...I'm sorry frowny about the dress. Well there will be plenty when you can afford it teehee. Yes the dress I am commissioning is going to be the same color and same look hopefully if she can get her hands on the material but she is usually really good so we shall see.

Um he usually comes in a couple of times a week. Usually his bigger shopping trip is on Saturdays I know his schedule I try to avoid but I have to do my job see and that makes it hard. He's been in but I haven't been there. My front end people try very hard to keep him away from me. It was unlucky with the last incident. But I just have to be diligent and stay in places were I can get away. My issue is that I freeze when I am scared. I can't movie and or thinkg clearly. So when everyone tells me to just use my walkie to get help that doesn't really help me.

I hope that is the case at the festival. I really do. But I thought my old friends were my friends you know? So I am super worried that they are gonna think I am some freak if I need to go hide or something or have a tantrum (which I have been known to do in the middle of a place or get super quiet and stop talking). I am sure you are right. It will be fun. I will look great...(if i can find that darn shawl). I will take pictures maybe...we shall see if not of my face at least of my outfit. I am already fretting about it. I can't sleep well. I am constantly thinking about what to do if I freak out they have never actually seen a full on meltdown before. My friend has seen a partial one...but she was able to stop it.

But its ok. I have you guys here right?