First appointment with CAHMS on Friday - am so nervous. Any advice please?

[SIBLINGRIVALRY]

Hi,

I am pretty new on MN and haven't posted on SN before. However, I have spent the last month browsing the threads - particularly those related to ASD and AS. I have found them to be invaluable ATM as I have no experience of SN myself.

Basically, my dd1 is 7 and has always been what I would kindly describe as 'eccentric' with loads of quirky behaviour, fears and anxieties. However, about 4 months ago the quirky behaviour became more frequent,she started to have lots more tantrums and generally has become really hard to deal with.

School referred her to CAHMS (appointment Friday). I have only just started talking to people about my concerns. Previously, I tended to keep it to myself as I could see that people found her a bit odd at times and just didn't feel that they would understand. By 'people' I mean friends, PIL,and other mums.

The thing is, since I have spoken to dd's teacher and a couple of others -OT, paed nurse- the autistic spectrum keeps being mentioned. I am trying to keep an open mind, but the more I research it, the more things seem to click into place.

I feel so lonely and isolated and dh isn't giving me much support, so would appreciate some advice from any of you experienced mums.

If I give you an overview of her behaviour, would you give me your opinions please?. I know that you can't tell me anything for certain, but I just feel desperate to talk to anyone who has gone through this process. Thankyou in advance.

Here are a few of dd's 'quirks'. There are many,many more! :

She runs in circles , shaking her hands and talking or singing to herself.

She can't bear any tags in her clothes and makes me cut them out.

Eye contact with anyone but me,dh and her sister is very hit and miss.

Very poor sleep pattern.

She can't cope with any kind of change, no matter how small - usually will have a huge tantrum if she has to undergo change.

She is very bright -on gifted and talented register.

She is obsessed with dates eg when a programme was made; dates of birth.

Not great socially, she seems to have to 'control' play and frequently withdraws and goes off to play by herself.

And the list goes on.......!

Yes DD is usually fine at home most of the time, she can be hard work if schools been stressfull, but during the holidays she is fantastic!!

Ditto! Bet we are unusual, in that our day to day lives can be easier during holidays.
Already dreading September - not many mum's will be saying that!

god yes i so know what you mean, it shouldnt be to bad this year because she will have the same teacher, its only a small school so all the classes are mixed years.

www.autismresearchcentre.com/tests/default.asp

That's the link to the tests that the professionals use when they're finding out if a child is on the autistic spectrum.

As someone with an ASD, it sounds entirely possible to me from what you write, but of course only a professional can diagnose.

Did the test, Amber, thankyou. DD scored 19, which is at the mild end - still autistic symptoms though. Can't wait for the test, in a way. At least then we will know.

Thanks, Leonie.
I can only imagine the frustration you have felt over the last couple of years; good luck with your statement.

BTW, love the comment about your 'different' American language - how patronising.

Hi there

I have an 8 yr old dd with AS and your dd sounds very similar to mine. The singing, spinning the list goes on.

The church hall party strikes chords too. I can remember very clearly how sad I felt when all dd's "friends" were in the garden on the bouncy castle while dd was in the living room watching her favourite teletubbies!!! If you need to chat at all or ask questions please do.

Congrats Leonie .
I can appreciate how you feel. I had an awful pregnancy and birth with dd1 and it put me off having dd2 for a long time. Not strictly the same, I know, but having dd2 was the best decision we made.

Whether my dd has AS or not, her problems have meant that she struggled with many social skills. Having a sibling has helped her a great deal and I'm sure that you will find the same. There just seems to be an invisible bond between them and she is closer to dd2 than to anyone else (apart from me). I really hope your dd finds that with her new sibling. Enjoy!

Ilovehousemusic, how is your dd during the holidays - when she is at home?

Hope you don't mind me asking, but I am finding my dd to be a lot calmer and her 'quirks' are less evident since she broke up for the summer.

I am assuming that this is because she find it really difficult to cope with the huge demands on her during term-time, so her behaviour is a lot more obvious.

We are still having tantrums/shouting etc, but not 20 times a day! I would be keen to know if you have a similar experience. Thanks.

Talking about parties,etc -we have just come back from a party at a local restaurant. It was for a friend's baby and at the end of the night,my friend took the baby around all of the children to say thankyou. They were all giving kisses and hugs to the baby and it was heartbreaking to see my dd freeze when the baby came to her. The other kids were saying 'Just give her a little kiss', but dd just stood still, arms by her side.
The baby wrapped her arms around dds neck, but she still didn't move.

The evening went well, though, apart from dd asking me how many more minutes til we went home about 200 20 times.

The reason your dd may seem to have less "quirks" now that she is on holiday might be due to her "stress levels" building up during school day. My autistic ds is very very quiet at school, but bonkers as soon as he gets in the car to go home. I know that this is because he works hard at keeping what is bothering him at school (eg seeing others break rules, not following timetable, changes to routine etc)all to himeself, and when he comes home he can "explode!"

Also, whenever we go somewhere, even parties and good fun things, ds ALWAYS has to know exactly how many minutes we are staying, and God help me if we are one minutes late leaving !!

A list of "social stories" or scenarios are helpful, as he loves following rules.

Takemehome- thanks for posting and for 'backing up'my theory about the holidays. Sometimes I'm not sure what to think!

My dd is also very quiet at school and worries about the other kids breaking rules. There is one nightmare challenging little boy in her class who she is constantly stressing about.

What kind of social stories do you use? Am keen to try anything

sibling rivalry, it sounds like oyu are in a similar position to me! I have been meaning to post for days now but this is the first time i have got round to it.
I see my thread has been linked to on here so you know my story! Its vital that you push and push for what you think is right! You are DDs mum and the best expert on her needs! If i had stopped fighting when this all started we would have no statement, no DX and No support! Gos knows where DS would be now!

Thanx bonkerz.Yes, I read your thread about the ADOS test. I didn't have a clue what to expect, so it was really useful.

Isn't it hard sometimes to keep trusting your instincts and pushing forward? DD is a lot happier when she's away from school - think it all just gets too much for her -so I sometimes wonder if I am over-reacting. Then I think of the last few months at school and know I will regret it if I don't keep going.

How is your ds at the moment?

He is struggling at the moment, very low self esteem because he has been out of school since december and feels very insecure! He is struggling at the play scheme but thats more that its a social thing and he struggles with that alot! At home he is physically aggressive right now which is hard to deal with but when he is good he is very very good and when he is bad he is horrid!

Oh bonkerz . I feel for you and your ds.
You must be totally frustrated,too, waiting for everyone else to get their act together.

I don't know much about ASD and AS, but I imagine that his low self-esteem links with the aggression. Reading your threads, though, you are doing everything you possibly can to help him. He's fortunate to have you in his corner.

Are you managing to keep your chin up? My situation is different in some ways to yours, but I can really understand how it can be hard to keep it together.
when your child is suffering.

Hope your ds gets he needs soon. x

Struggling to stay positive! MN is amazing and i have had some brilliant support and infromation from MN which is helping me get through. Am on anti depressants which was a last ditch attempt to get myself through the next few months but its still a struggle. Social services have stepped in and are paying for respite during the holidays which is invaluable to me right now.
Have a big battle coming up trying to get the special school named on his statement though as LEA want him in MS and its just not going to happen. Strange thing is though despite having since April the LEA have not come up with a MS school!

I'm not surprised you are struggling -LEA are just taking the mickey..
Thank God for the respite and MN. I think it's amazing how supportive it is.

Do you have any other support -family etc? I know it can be hard to ask other people to help out. I worry that no one else could cope with dd when she's at her worst.

If it's any help, I'm on AD too - they just take the 'edge' off. My dd2 is playing up because she sees dd1 having tantrums etc and thinks it's fair game.
Then, dd1 kicks off cos dd2 is in her face all the time, making a noise and nicking her books. Happy holidays!

yes i know how it is when DCs copy the behaviour! My DD who is 2 trys to copy DS but she is funny not annoying!!! My sister is actually moving 120 miles next week to be nearer to me which will be brilliant and support that i need right now! Im hoping by the end of September we will have LEA agreeing to special school, a formal DX of ASD and DS will be starting to go to school! FINGERS CROSSED!!!!

Great news about your sister, that should be a big help.
Let me know how you get on with the dx and LEA - will keep my fingers crossed too. Take care.

Evening all.

What was I saying yesterday about dd being less quirky and anxious during the holidays??
I should have kept my big mouth shut!

I have a hospital appointment tomorrow morning and literally had no one to look after dds, so I asked a friend who lives up the road. Her dd is friends with my dd (in same class), so it seemed to be a reasonable option.They have to come here, though, due to her dh working nights and needing to go to bed in the morning.

When I told dd she became agitated and started talking about how she didn't like strange people coming to her house and using our cups;etc. She said that they didn't know 'the rules'.

Cue lots of running back and forwards, hand flapping and talking to herelf.
After tea, it broke my heart to hear her do this for a full 30 minutes in the room above the living room. I wanted to cry.

Just before bed she started panicking in case the other girl wanted to look at her books -dd keeps them pristine and flips if the covers have any creases, even the type you get down the side when you open the book IYKWIM?? She wouldn't listen to any options I gave her and kept repeating the same points,hardly drawing breath.

Then she asked if she could make a list of rules to stick on the door and ask everyone who comes in to read them.

I rang my friend, who has said she will take them to the park (weather permitting). Otherwise, she will bring her dds new wii game.

God, I feel so stressed. I would cancel appointment if I could, but waited forever for it. Feel like a crap mam cos I don't really know how to react to it.
Does any of this sound familiar to anyone?