Ladies Camera Club

20 Jan 2011

Can anyone advise?

This is just a quick post, perhaps more of a request for help - mainly from mommas of special kids :)

I took Belles to CAMHs yesterday. I poured my heart and soul out to a woman who had a clipboard in one hand and a look of pity as she gauged my desperation. Belle sat back in the chair, distracting herself with my iPhone. She always distracts herself but always, very always, listens. The woman, actually a psychologist, asked Belles to interject if she felt the need. I felt the need to tell the woman that Belles doesn't interject - that was part of the reason why we were there.

Belles is a lot of lovely things but she has an unusual behaviour.
Don't get me wrong, she isn't a complete psycho of a child who screams the house down nor creates havoc or has come home decided that she hates us and wants to die (rather much like I did when I was a teen - I hated the world, it owed me a favour and I wore black....every single second of the day). No, she is a very placid child who gives very little eye contact. She will not initiate conversation and I don't think I have ever heard her ask "Why?". She never questions or argues or moans. She does not spontaneously bound into a room with a tra-la-la-la-laaaa nor make a racket. She rarely sings aloud. She will quite happily sit and just observe. She prefers her own company. She never asks for friends to come round for tea or just to hang out (I have to ask if she would like this to happen). She never asks for new things. You can't treat her or offer hugs and kisses - she often says "No, thank you" and only recently I've stopped becoming hurt about it. She struggles but rarely shows it. She rarely cries. She never demands food or attention. She can become frustrated but its not very often. She prefers routine. She irks at speed and loud noises. Hates the light. Loves hot baths. Likes to lay down a LOT. She plays with string and soft toys ALL THE TIME. She takes an hour to eat her meals. She never, ever complains. She rarely chooses her own clothes to wear. Would rather watch cartoons. Pretty much eats the same thing every day unless we encourage her otherwise. Likes to fiddle with little fiddly things. Talks about animals whenever she can. Knows more facts about animals than I will ever get the chance to read and learn about - seriously, she is a genius with animal facts.

She is 15. This is not normal. And these are not negative things about her. These things are her but there is something stopping her from flourishing and perhaps maturing and its my job to enhance that - isn't it?

Whilst the woman cogitated and made select notes as I gave her a thorough description of my daughters odd behaviour, I was becoming agitated. The woman expressed that whilst Ellie shows a few similarities to a child with ASD, Ellies case was not strong enough and that we should seek help from her schools to combat some sort of nurturing. Wow - just like that? You lumber that on the school when schools are in fact for education and not some sort of therapy?

Im at a loss. I don't know where to go for help. We need to tap into Belles head and re-arrange a few things - help her, coax her, coach her, co-herse her, assist her. Whatever. She needs support and we do the very best we can but there is no progression with her. And yes, its simply reassuring to have a daughter who isn't a tearaway, a problem child or basically - a little sod.
But what needs to happen is to jump-start what's going on in that beautiful mind so that she can be taken a little more seriously - you know, have her voice heard and for people to take note when she might, on the odd occasion, ask a question. Maybe take her seriously and not brush her aside or talk to her like a baby. Believe me, the amount of people who do that "gush talk", you know that super sickly "hello little girl, whats YOUR name? Isnt it a LOVELY day? OOOOOH exciting! You have SUCH pretty HAIR - weeeeeeeeeeeeee" like they are speaking in broken english is UNTRUE! She is a lot of things but she ain't stupid. GAH, im going mad!

Anyway.....lol, can anyone suggest a system we can tap into - please? I was thinking MIND but maybe you know something we don't.

Thank you x
Giveaway still open until Thursday night - see posts below x

PPS: Just have to come back on and edit and thank you for all the comments and the emails I have had this morning - overwhelming..... close to tears. Where would I be without you kind blog readers?

38 comments:

Linda said...

I can't offer practical advice as I don't live in the UK, but just wanted to say that your daughter sounds very much like my daughter, who has Asperger's. Your hopes for her and for resources and supports sound very much like my own. She sounds lovely and I wish you well.

cardmaking bird said...

Hi Kristy,
I'm so sorry that you've had the usual negative experience with the so called 'caring services'. And it's a shame that the fact you've nurtured your daughter to become who she is, isn't recognized as a good thing but in some ways, held against you. Maybe if you hadn't been the person you are and encouraged Belle and brought her up to be the amazing person that you tell us about - whatever her 'differences' - the professionals would see her differently but then you wouldn't be you and Belle wouldn't be who she is. I hope that makes sense!!?? My mum has worked with people with learning difficulties for almost 30 years, so when I see her tomorrow, I'll ask her if she has any advice. Try and stay positive. At least Belle has you in her corner. Hugs, Marie xx

Bettyann said...

I hear you..don't have any advise, but I can hear your frustration..here in canada,we have "societies for community living"..take care..someone will hear you darling xxxx

Yvonne Russell said...

Thinking of you. My heart goes out to you. Take care and wishing you and your family all the very best.

Rita Hutcheson-Cobbs said...

I was thinking the same thing as Linda...our oldest son has Aspergers but wasn't diagnosed until he was 22 yrs old. He had other health diagnoses too. I recommend HIGHLY the book titled, Don't Look Me in the Eye. This book was written by a guy who designed guitars for the rock group KISS. It was like I was reading about so many who have Aspergers. He too was diagnosed as an adult. I am there for you and completely understand, however, understanding teens/adults with Aspergers is the best medication of all. Get this book, read it...promise, it helped me tremendously. Embracing the differences will be important. Let me know if you have any questions. I worked for years in a facility her in the US that worked with kids with Autism, Aspergers which is in the spectrum of Autism. I understand...here are my {{{Hugs}}}

Candace said...

Kirsty my 8 year old Son shows some very similar characteristics and I am only just at the beginning of the 'can somebody please help me process'. We have been seeing cahms for 8 months now after a 2 1/2 year battle to get referred to see someone.

In this time I feel we have got no closer towards a diagnosis let alone any treatment/therapy that can help.....oh apart from sleeping tablets. SLEEPING TABLETS for an 8 year old!!!!! (he only sleeps about 2/3 hours a night, every night)

I really do understand your frustration and I have encountered so many barriers where quite frankly people don't understand and don't want too. I'm not talking about family. friends, complete strangers even but so called professionals at school, Dr, hospital, social services etc. Just don't start me on complete strangers who feel the need to tell me what to do, how badly behaved my child is etc etc!

Sadly places are greatly underfunded and over prescribed. I hope one day things will work out for your family. Just keep banging on those doors and never ever stop fighting, not that I think you ever would:0)

Like you, I know my child and know things are not right. We just need to be heard. x

Anonymous said...

I second, third, fourth (!) the Aspergers suggestion. Not saying she HAS Aspergers, just that the symptoms sound similar and advice given for those with Aspergers could help Belle. (My son was diagnosed as an adult by a wonderful lady in Sheffield who just knew him before we even arrived for our first appointment!) He has other medical problems but is overcoming everything after CAHMs help (he flew alone to L.A. last September!) and I'm so sorry that they don't feel they can't hep Belle. It could be that her Floristry (sp) course will help give her some confidence. Good Luck Belle. Jude. xxx

Michelle said...

Morning Kirsty - I am in the process of going thru an Aspergers Diagnosis with my 6 yr old. Very hard as her on paper assessment (DISCO) that I completed with the Psychologoist scored well in the autistic spectrum but on play therapy they didnt see enough to diagnose. OMG I was furious, seems from what I am hearing that high functioning Aspergers is hard to diagnose but if you lived with me its a obvious as the nose on your face. You need a referral to the Psychology team in your hospital - In Ireland that is your first step. Good luck Hon

Anonymous said...

Hi, Out of mainstream and into her college and other school full time. Kick scream dance do whatever you need to do , put all you have said into a letter and send it to the Chief Executive of your local Primary Care Trust - quick before they vanish as the Gov are getting rid of them! Copy it to your GP and your daughters medical consultants- each one of her team to have a copy..ok they have heard it before but express it like this and the worry and distress it is causing you and how worried you are. Insist on a meeting with them all and do not under any circumstances talk like this in front of her again - she is not silly and you are saying she is different etc so keep it away from her and then have her come to the appt once you have a plan eg college more days or whatever it is. Keep a diary for her recording the things which are not considered normal for a 15 yr old - prob most of it sadly - and try and provide things for her to do which are more normal - engage her in household activities such as cookery - basic life skills so she can care for herself boil a kettle, make a sandwich, cook cheese on toast, chop up a carrot and cook it etc etc. Encourage her to learn to load the washing machine , how to iron something etc. Use some of the time she would be playing with babies toys to do these things normal life skills she should by now be able to manage. drop her off at a shop and ask her to pop in and buy x y and z and give her soemthing complex to ask for or find building on this so she can gain the skills to go shopping. Get her to plan what she needs to wear to college the evening before. Again using time for baby play or animal chat to instead build on normal. If she doesnt do it then she wont have anything to wear will she - that will be a shock! Does she wash and dress herself? If not get a big alarm clock and teach her how to use it and she needs to get herself up on college days to begin with and she needs to wash herself and get dressed and be ready for breakfast by a set time if needed draw the clock hands on a picture for her to check against. If you can then get her to have chosen and semi prepared her breakfast the evening before so she can then come down and sort it herself. She needs to learn baby life of teddy bears has gone now and tiny steps have to change each day and each week these skills need to be built upon. Yes she is disabled but difficulties are not going to be vanishing by crying over it all and encouraging dependency. Harsh? No - reality and methods used with severely disabled people as routines and skill building are vital !! Allow her to shit her eyes and cuddle teddies and she will. put the teddies away- send them to a charity shop asap. she can have 1 or 2 in her room for bedtime only. discuss with her why and say she is 15 and nearly an adult now. she could be a Mummy herself now and so needs to learn things about the house. she needs to be taught how to clean her room , give her a radio and encourage noraml 15 year old behaviour asap. when she talks to you she must look at you - say why and say it is not acceptable as an near adult etc and she will learn to do it. Good luck and this is sent with love and support- you have the keys her to a new daughter..time will be needed and one step at a time!!

Anonymous said...

Hi, Out of mainstream and into her college and other school full time. Kick scream dance do whatever you need to do , put all you have said into a letter and send it to the Chief Executive of your local Primary Care Trust - quick before they vanish as the Gov are getting rid of them! Copy it to your GP and your daughters medical consultants- each one of her team to have a copy..ok they have heard it before but express it like this and the worry and distress it is causing you and how worried you are. Insist on a meeting with them all and do not under any circumstances talk like this in front of her again - she is not silly and you are saying she is different etc so keep it away from her and then have her come to the appt once you have a plan eg college more days or whatever it is. Keep a diary for her recording the things which are not considered normal for a 15 yr old - prob most of it sadly - and try and provide things for her to do which are more normal - engage her in household activities such as cookery - basic life skills so she can care for herself boil a kettle, make a sandwich, cook cheese on toast, chop up a carrot and cook it etc etc. Encourage her to learn to load the washing machine , how to iron something etc. Use some of the time she would be playing with babies toys to do these things normal life skills she should by now be able to manage. drop her off at a shop and ask her to pop in and buy x y and z and give her soemthing complex to ask for or find building on this so she can gain the skills to go shopping. Get her to plan what she needs to wear to college the evening before. Again using time for baby play or animal chat to instead build on normal. If she doesnt do it then she wont have anything to wear will she - that will be a shock! Does she wash and dress herself? If not get a big alarm clock and teach her how to use it and she needs to get herself up on college days to begin with and she needs to wash herself and get dressed and be ready for breakfast by a set time if needed draw the clock hands on a picture for her to check against. If you can then get her to have chosen and semi prepared her breakfast the evening before so she can then come down and sort it herself. She needs to learn baby life of teddy bears has gone now and tiny steps have to change each day and each week these skills need to be built upon. Yes she is disabled but difficulties are not going to be vanishing by crying over it all and encouraging dependency. Harsh? No - reality and methods used with severely disabled people as routines and skill building are vital !! Allow her to shit her eyes and cuddle teddies and she will. put the teddies away- send them to a charity shop asap. she can have 1 or 2 in her room for bedtime only. discuss with her why and say she is 15 and nearly an adult now. she could be a Mummy herself now and so needs to learn things about the house. she needs to be taught how to clean her room , give her a radio and encourage noraml 15 year old behaviour asap. when she talks to you she must look at you - say why and say it is not acceptable as an near adult etc and she will learn to do it. Good luck and this is sent with love and support- you have the keys her to a new daughter..time will be needed and one step at a time!!

Sue said...

YOU are her mum ..YOU know better than someone with a clipboard.. It IS harder to diagnose Autistic problems as children get older..its easier if they can tick stuff off while Bell was developing as a baby and toddler.
Natalie (26) has never been diagnosed as having any Autistic problems as she was 18 by the time they got round to listening to me and there were so many other "problems" so sort out first....She most definitely Autistic though.
You always have the right to a second opinion. There are specialist centres set up to diagnose ASD Daniel went to the croft clinic (NHS) in Cambridge (via CAHMS)
Unfortunately having a diagnosis opens so many more doors in schools.
((((((HUGS))))))))))))

MARION said...

Kirsty... I can't give you any advice on this subject....albeit to say you are a lucky mummy to have such a beautiful child and Belles is a lucky girl to have such a yummy mummy.... Actually that sound a bit creepish... I'm not on the pull honest xxx

Sue said...

I would have suggested MIND. Even if they can't help, they may be able to put you onto someone else.

Fiona said...

I can't give you any advice Kirsty unfortunately, but I do feel your frustration.
That is a beautiful photo of Belle and she is lucky to have such caring parents. Hope some of the comments are helpful for you. Good luck sweetie.
x

Sandie said...

Hi Kirsty,

Sorry, I'm no way qualified to offer advice but just wanted to leave a note to say that even if the right people aren't listening, we are. Big hugs to you and Belle. Sounds like she's a very happy teen regardless. Hoping you get some support and help soon xxx

p.s. - I hated the world, wore black and thought everything owed me a favour as a teen too... lol.

Sandie

Heather said...

Hi Kirsty
I do agree with a previous commenter on getting your frustration down in a letter & sending it to all the 'professional' people who come in contact with Belle & are supposed to be supporting her. Beg, steal or borrow comes to mind but I think thats how its going to have to be until you can get everyone to agree that Belle is different (not disabled grrr hate that word) & that they have a duty to help you as a family with helping Belle cope in this world. My son is 8 & fortunately we have had great help from CAHMS & his school & that makes it worse when I know so much would improve for Belle if doors were opened to her. Keep at it Kirsty. Find your inner 'Tiger Mother' and kick some ass!! You've done it before & you can do it some more :)

Thinking of you & sending you all lots of good vibes & hugs xx

Anonymous said...

Kirsty I'm sure you have already looked but maybe first pit stop is here
http://www.autism.org.uk/
Sadly it's a case of fighting on and looking and searching and talking..........just as you are doing now.
Hope your daughter gets the support she should have. It's her right.

Salamanda's Scrappy Adventures said...

Hi Kirsty, I'm not an expert but teach at a secondary school in Scotland. From what you describe of your beautiful daughter I would say (like previous commentators) that she may have Aspergers or be on the autistic syndrome. Our middle son has severe dyslexia (as does my Dh) and we found we had to shout scream and make a huge fuss to get help. He is now in further education and had reader and scribe but you only get if you make a fuss. the system sucks as if you don't cause a problem your child can be lost in the system. Sorry no help but just want to say you have a beautiful daughter and don't give up.

Leah's crafts said...

Hi Kirsty ,
Stumbled over your thread, my daughter is 12 turning 13 and has global development delay. I dont know what advise i could offer tho i am willing to try . I was constantly told there was nothing wrong with heather and it was insinuated it was me not her that had a problem . If you ever need a chat or vent please feel free to come on over to my blog or find me on Facebook under Leah Hepburn . You are not alone huni hugs to you and your daughter.

Rachelsmum said...

As the previous posters have said, it does sound as though your beautiful daughter is showing some signs of Autism/Aspergers. I wonder whether you have approached her school as they have many links with various outside agencies and definitely shout out about it to all that will listen - GP included. The Autism Support organisation may be a place to look for local support groups and just someone to chat to who understands. Good luck, hugs xxsue

Cath x said...

Hmmmm
Has Belle been involved with a developmental team?
She sounds very quirky, just as Corey is. He is so different in so many ways from his peers. I'm presuming the SEN co-ordinator at school is involved? What about an Educational Psychologist?
Hugs Kirsty, it is really tough having a child who doesn't fit in the 'normal' bracket.

Alana said...

Kirsty, I work in a primary school as a TA and also my son has semantic/pragmatic disorder which is one of many things found on the Autistic Spectrum. It does sound like she could be on the spectrum. My advise is this...scream, shout, make a nuisence of yourself, make them listen. Get an appointment with the pediatrision (sp?). Speak to the Autistic Society for advise. Do as mentioned before, give her situations to learn about money, give her the life skills she needs to cope when she is older.

I know it's heart breaking, even now I get upset that our son is not like his peers. Though saying that he has come along way and only we notice his little ways and he is now applying for A level study. Wishing you all the good wishes, stay stron and remember...fight!

LYN said...

lyntwine@clara.net
i agree with what Linda said. I have worked in CAMHS but I am not a clinician. Your daughter sounds like she has asperger's or a similar condition. My grandson has asperper's but not so severely.
my advice is not to give up, keep pestering CAMHS until you get some answers.
if you are not satisfied with the clinician SAY SO and ask for another opinion. GO TO THE TOP of the tree and keep on pestering the doctors. I really feel for you and god Bless.

Paula said...

This sounds very much like an anxiety disorder (which Asperbergs is a form of, even though it is included in ASD). It sounds like maybe seek out a child psychologist to help with social coping and interaction. If they suggest that the schools work on this, explain that you would prefer to pay for private and individual help. If that particular psychologist is not able to then request that she give you references of where to go next for someone who may have more experience. If the situation is anything like here in the US, money and help is only given to children with an actual diagnosis of Autism (generally moderate to severe because that is when it becomes a problem for others). Keep it up, keep bugging psychologists until one helps. Their job is to help and if they can't find someone who can - that is the nature of the profession!

Jo E said...

I can't offer you any first advice but just wanted to send you a virtual hug and, once again, urge you never to give up your fight.

Jen said...

Just wanted to send you hugs and say what a lovely photo of Belles that is. Like "anonymous" I was wondering if she has to be in mainstream school at all now, if the floristry and other college are better for her? Just wondering.... No advice otherwise, as I've no personal knowledge of ASD. HUGS darling xxx

Jaki said...

Belle is so lucky to have you as a parent as you obviously care for and cherish her. My son is very differnt from most 12 year ols boys too and it's difficult as a mum, especially when he has a younger brother who is more 'typical'
My son was diagnosed with a very rare syndrome last yeae so, for the first time in my life, I've had to be involved with CHAMS, specialists, educational and neurological psycologists, the list goes on.
I only know you 'virtually' I truly feel that you are an amazing woman and very strong. As a parent you have to be strong anyway but when anything is different from the norm you just become stronger.
Remember, these things are sent to try us and what doesn't kill us makes us stronger.
Take care
Jaki♥
jaki41@fsmail.net

Debo said...

My cousin has recently been diagnosed with Aspergers (about 18 months ago). He was 14 at time of diagnosis but his parents only started looking for an official diagnosis because they were interested in the financial benefits - attendance allowance or something? - although it has been clear to the rest of the family that something was different ever since he was little.


It seems unfair that you have been constantly fighting for your lovely daughter and have been constantly let down, but my aunt and uncle only decided to get a diagnosis cos they saw financial gain and they've been sorted really (relatively) quickly!

I cannot give you any practical advice or help but I would agree with the earlier messages to keep on SHOUTING until you are heard!!!
It seems very unfair but in an overstretched NHS(and everywhere), it does seem that if you make a fuss (but nicely) you are taken more notice of!

I wish you all the very best. Good luck, don't give up!
x

Rosie (Freycob) said...

Kirsty, you know where I am. This time and every time. xxxx

Trish said...

Hi Kirsty,
I was very moved when I read your post and although I couldn't help I thought my sister might - she has a son who is very special to us all and is now accepted for who he is. She is also studying for a degree in Psychology. This is what she wrote back to me:-

Hi Trish,
When I was reading this, a lot sounded familiar with how John was. Which made his school think he was Autistic, (not sure the psychologist is right about ASD) it sounds to me that she is attentive to the things that interest her, but does not feel the need to include others. Could she be high functioning. Could she be 'gifted'? Has she been assessed by an education psychologist?. John's ed psychologist thought he was bordering on 'gifted' and just functioned on a different level to his peers. John listened and heard everything and just collected information, when he was younger he did not share very much of the knowledge, it is only in the last few years that he does this. I think this may be because he has found somebody that he can talk to (forever) about the stuff that goes on in his head (pure luck, a school friend very much like him)I am not an expert so not sure what to say really.
Linda X

Hope this may help - and sending you hugs.

Trish

Anonymous said...

I am no expert on Aspergers by any stretch of he imagination but I do know that this book is great never heard the radio article but hope it can help give you clarity/ optimism. There is a tv documentary about the family too but I really don't know how you could access it.
http://www.bbc.co.uk/radio4/hometruths/20040308_column_aspergers.shtml

Anonymous said...

Hello
i stumbled onto your blog looking at all the beautiful things and this comment really moved me. I am an assitant SENco in a secondary and I would suggest you make an appointment with the schools SENco to discuss somebody from their special needs teaching service of the LEA Autism team to come in and observe your daughter. she displays many of the behavioural traits that I observe daily in our ASD students.
good luck
x

Anonymous said...

Hi... see if you can get your GP to refer you to a pediatric occupational therapist. My friend is one and your daughter sounds like some of the children she works with. They do private referals as well if you can't get in on the NHS.
Hope this helps.

Charming Memories said...

My Dearest Kristy,
Trust your instincts, I am sure they are spot on. As a mother, you just know.
I wish I was there to help you help Belle.
Godspeed to you.

Tracey S said...
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Tracey S said...
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Tracey S said...
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Tracey S said...

Your daughter sounds very much like my son too, he has aspergers. He has never asked for friends round, never uses mobile phone or computer socially, never goes out with friends, prefers his own company, very quiet, doesn't speak much etc.
He went to mainstream school where he was basically on his own, he was never bullied but just wasn't on the same wavelength as all the other teenagers! He never went on the playground or to the canteen but stayed in the learning support room at breaktimes. I was at a loss as what to do especially when he finished year 11. We went to visit colleges who had courses for kids with learning difficulties, my son is quite good academically (got some gcse's) but not good socially. We visited lots of colleges and looked at mainstream and special needs courses. The decision was so hard but we enrolled him on an essential skills course at a college,he was quite keen. I was unsure if it was the right decision and when he went for a taster day I was very upset! All the other kids were far worse than my son and I was worried it may bring him down, I cried all the way home. There was not many more options for us, the choice was put him in a mainstream course where he would be on his own like at school or put him on a course where he would be the top of the class but people would socialise with him? We opted for the "essential skills" course. I have to say its the best thing we ever done! Since joining he has become a lot more confidant, has some friends, has been away for a week to holland, joined a youth club, joined 2 martial arts classes and does one day a week work experience at Primark! He has also got a 'circle of friends', this is a charity run social circle where they get a group of mainstream 6th formers who go out with my son once a week bowling, cinema, meals etc. All the volunteers are police checked and have a monthly meeting with my son to decide where to go. This is run by 'interact' and is called 'circle of support'.
My son was not keen to do this at first but now really enjoys it, Interact also do lots of days out etc, they are for kids age 13-18.
My son has decided to do a different mainstream course next year (art) and I feel he is now ready. The essential skills course has been great for him!
The future looks brighter!!
Just thought as your daughter is coming up to the end of school this may be helpful (hopefully).
I tended to find no one seems to help or give realistic advice unless they are a mum who has been through similar!
Hope this helps,
Tracey xx