My complicated daughter - advice please

[sarahmc1983]

Hello all - im new here but looking for your advice really.

Having read through so many websites and posts on here, I decided to join, as so many of the posters here seemed to be finding strategies to help themselves cope - and wondered if anyone can offer any advice...

OK so i have 2 daughters one aged 6 and a 4 year rold.

Ever since my 6 yr old was small, she's been really clingy, struggled with interaction with other people, issues with foods textures and so on. OK so we just though thats the way she is and just took it as normal for her, even though at times it was hard. We've had to leave so many parties and classes because she just struggles with it so much

i ahve thought for a while she may have ASD / aspergers. her teacher felt the same. she was observed by an assessor who said she ticked some boxes but not others and they will come back in few months and see how she is.

but recently, as ive been reading more, i am getting more certain she does have aspergers and may need some help.

- school holiday club have refused to have her as the times she went, she sat in one chair for 8 hours and would noty engage and didnt eat or drink. just sat and stares off to the distance and is oblivious to people trying to help her

- we took her to what we thought would be a fun kids play and craft session in school holidays for 2.5 hours. we stayed with her to start but when we left, she hid under the table until we came. again couldnt interact, said the music and lights were too loud. She has an obsession with star wars and the only time she spoke to any one was when they gave her a star wars toy and got a few words from here

- she can cope with the hand dryers or blender or trucks and often has hands over her ears

- she has older cousins and they will be playing together. the boys will eb callinge ach other names like smelly and stinky etc and they may say to my daughter " baby". and she can get really upset taking it so seriously. my 4 yr old will just tell them they are stinky and laugh it off but with her cousins and at school she gets really upset and takes names and jokes really personally.

- she has A complete meltdown if things on her plate at meal times arent rite - for example, she cant have beans on the same plate as her meal because she doesnt like the texture when the chips are wet - same with toast etc. if we change brands of sauce beans etc she gets upset and wont eat them - even if she hasnt even seen the tin to know e changed brands

- she went to a party for a cinema trip and meal. she sat on the parents knee for the whole film as she was scared of the noise and the film (even tho she watched it home with us and was fine) and refused to sit at the table becuase ppl were eating garlic bread with cheese and she doesnt like it so i got a call to collect her. she was stood in a corner away from all her friends. same at school there was cheese pie for dinner and she refused to eat her own meal (with no cheese) because everyone else was eating cheese and the smell and seeing the cheese made her feel sick.

- she has a bit of support at school by a support worker who comes and talks about her day and her feelings and coping etc. this support worker evn has to take my daughter to the dinner hall in the morning to see what the meal is for that day so she knows in advance as she gets upset and overwhelmed if she has to make a decision on the spot at lunch time with the busy and noisy dinner hall

- she has a few friends but often gets left out she likes to play star wars and with lego so her freinds often leave her out

- the teachers have started to give her a marshmallow if she speaks to them! they can t hear her as she spks to them so quietly

- she is so awkward and accident prone bless her - i feel awful when i roll my eyes and say watch where ur going but when she walks into doors, trips over thin air, hurts herself sitting down - then its hard to be sympathetic !

- we took her as a surprise to see a frozen show last christmas. we didnt tell her till we got there. our 4 year old was dead excited and danced and sang. my 6 yr old was completely overwhelmed and hid under her coat the whole time til we left.

- she struggles to go from one activity to the next- we are late EVERY morning! she may sit and eat her breakfast, staring into space in her own world and we'll be saying - come on we have to be going in 10 mins....we have to be going in 5 minutes....we need to be out the door.... and she has no concept of time or moving tasks. getting dressed she cant move on from putting her skirt on to putting her tights on without being constantly prompted / asked/ shouted at lol

- she struggles with structured activities and does things in her own time and no amount of encouragement / promting / begging gets her to do it - we took her swimming lessons - 5 kids in class - they all followed instructions and learnyt to swim. my daughter would stand in the pool staring straight ahead , oblivious to what she should be doing - but in the pool with her dad she will jump in and play happily.

- struggles to make eye contact - even with family


im really struggling with guilt for her - i dont want to be telling her off or getting cross with her for things she cant help. her sister is so much the opposite, social, friendly, lots of jokes. i know every child is differnt - part of me thinks its just her being shy and i keep trying to build her confidence but then part of me thinks she may be an aspie and need more help then me !
the more im writing the more i feel yes i need to speak to her doctor or school - but then i dont want to be a paranoid mum labelling her

what can i do?

sorry for the long post - just kind of emptying my mind of all the things that have worried me about her - and this seemed the only place i could

 

[Judge]

Seems to me you need to start by having her examined by the proper medical authorities....a psychiatrist and/or neurologist. Her traits and behaviors likely seem to reflect being on the spectrum of autism.

My traits and behaviors at that age weren't nearly so pronounced, although I didn't even begin to speak in sentences until I was four. Though I was content to play by myself for hours and hours. But didn't seem to have much difficulty interacting with others in small numbers. I was around eleven years of age when I began to think that I was very different from others.

One thing for sure though, Autism Spectrum Disorder is complicated. It can impact us all in very different ways, at very different amplitudes. It's not a condition that can be identified or classified with a "cookie cutter".

 

[DanR]

I didn't meet all the criteria either, but I met enough of them for a diagnosis. I agree with Judge; it's time for a real, professional, opinion.

Knowing what's going on will help you make better decisions and will help you out of the guilt cycle.

 

[sarahmc1983]

Thanks dan and judge. Yes i think ur right. I always worry about being a paranoid over protective mum !! I was shy when i was younger but this is def different.... Sitting under tables at parties ?!

It was the psychologist or whoever from the local authority who assessed her in school obderving her in class's for 2 x separate hours. She did answer questions in class they sed which is gud.

At home in her comfort zone she is like a different child... Singing. Dancing. Laughing. But any where social is leading to so many problems

But yes i think i will spk to my gp and get her referred.

 

[sarahmc1983]

Thanks dan and judge. Yes i think ur right. I always worry about being a paranoid over protective mum !! I was shy when i was younger but this is def different.... Sitting under tables at parties ?!

It was the psychologist or whoever from the local authority who assessed her in school obderving her in class's for 2 x separate hours. She did answer questions in class they sed which is gud.

At home in her comfort zone she is like a different child... Singing. Dancing. Laughing. But any where social is leading to so many problems

But yes i think i will spk to my gp and get her referred.

Even things like her school socks having to be folded exactly the same way each day and we get a big tantrum if not done rite

 

[zurb]

I feel really sorry for her. One practical thing you can do is make sure there are no surprises! Talk about where you are going beforehand, and talk about what to expect. And don't feel obliged to go to every party just because its the socially 'correct' thing to do, but don't make her the 'excuse'.

 

[sarahmc1983]

Thanks zurb. Yes we have stopped surprises now #! We are taking them to disney paris in jan but will be giving her a several week notice so i can show her videos etc to prepare her. We tend to go to most parties as she says she WANTS to go as i think she does want to join in... But then struggles. It breaks my heart and i used to get cross when ppl had spent a lot of tine and money on parties and she sat under the table and then tells ppl she doesnt like the party bag gifts lol i thinkvwe will just opt for small parties rather than the huge ones with hired rooms. I am trying to put my self in her place but i do think u guys r right re getting proper help.. Then i will know how to help her x thank u x

 

[zurb]

I'm not sure where you live - I'm guessing the US. What help is available, and clinician knowledge, depends largely on where you live.
I highly recommend that you read Rudy Simone's book 'Aspergirls'. It describes Aspergers from a Aspergirl perspective, and has suggestions both for the girl and her parents. Just remember, not everyone is the same, but it is a good book.
If you need more info on Aspergers in general, anything by Tony Attwood is good, particularly 'The complete guide to Aspergers'.
Speaking for myself (and I suspect many others), I crave [some] social time. Its the actual interaction we struggle with. Being in the presence of others is usually enough, without talking. After a social event, give plenty of space to unwind. Our kids will typically disappear into into their rooms and read until they are ready to come out.

 

[sarahmc1983]

Hi zurb. Im uk based. North england. I will have a look at those books. I will spk to our gp and see where to go from there. Thank you x

 

[Kirsty]

i think i will spk to my gp and get her referred.

Yes, this will give you peace of mind as a parent by receiving an official diagnosis, then your daughter can receive services and therapy to suit her needs. As a parent, you'll have access to some type of support too. Take along a list of traits on paper you and other people have observed to her doctor. It is free in the UK to be diagnosed professionally.

 

[Warmheart]

Please have a peek at the Facebook page
The Autism Discussion Page.
I believe this will help you very much.
There are 2 books which Amazon UK has, both from Autism Discussion Page. They are a tremendous help!

Getting an official diagnosis by a neuropsychologist will allow her to get some good supports.

Best wishes!

 

[sarahmc1983]

thank you so much everyone. i have booked her in with GP in a weeks time and think i will ask my mum to come along so she can keep my daughter in the waiting room while i spk to doctor before taking her in so she doesnt feel bad when i talk about her - i would hate to knock her confidence im just having a look at the page you recommended warmheart so thank you very much for that

 

[LittleLemon]

I think you did the right thing making an appointment. I made excuse after excuse not to have my then 5 year old daughter evaluated. Like you, I was worried about a label and other stuff. It got so bad at school that we were pretty much forced to do it. Her diagnosis led to realizations of my own symptoms and it has changed our lives completely. She got the diagnosis which was very definitive and now receives occupational and speech therapy inside and outside of school. The diagnosis/label ended up helping her. I only regret I didn't listen to other people's concerns sooner.

 

[sarahmc1983]

Thank u do much for ur post. Im so glad u shared your experience. I took her to gp and he advised going thru school nurse. Im trying to get hold of her. Gp said if i cant get hold of her he will do it. Im also trying to do activities to help her plan ahead how to deal with particular situations. So glad found this site. X