A glimpse into my 7yr old's life

hi - looking at all your info about your daughter, I thought that's the sort of thing I would do if my child was still young and I was in your position.  It's good you have the OT report....that will help.  Having a diagnosis, if appropriate, will help even more.  It will open doors for your daughter.  She needs an environment whether its home or school that understands her needs.  If she can get this it will help her anxiety and enable her to progress.  It can be a hard slog to get all the pieces in place with your local council/health service, but it has to be done because services will then follow on.  When that happens make sure you get what she needs, not just what they offer!

Mhairi - Yeah the OT was fantastic and we've just gotten her report through which states she has extreme difficulties with sound and that she has a "significant underlying need for the stimulation she receives from strong movement activity" i.e she needs to be able to do something very physical after sitting still for small periods to help her with her concentration. It's been such a relief that at least one professional has aknowledged some of her problems and she was so understanding and knew I was telling the truth when I said that she would quite literally bounce around and jump off things for hours on end in a repetative way without getting tired or bored. At one point during the appointment she kept climbing a set of stairs(4 in total) and then diving off the top onto a crash mat over and over again until we told her to stop (she didn't want to but we had to move on to something else).

It also means that the school HAVE to take notice of what we say, the OT has recommended in her report that my daughter has chewy tubes/chewlery available to chew on when needed, that she MUST be able to have time out from alot of noise and that they need to try and intergrate alot of movement / physical stuff to help her. When we saw her new class teacher before the summer break she was very dismissive of her problems at one point asking if the kidney problems my daughter has are perhaps the root of her 'sensory problems' I actually had to bite my lip and look away to calm down or I would have swore/ranted at her for her ignorance. So of course I was very worried that her new teacher was going to make her school life harder by being very dismissive when she's saying she's finding the noise too much etc wheras now I'm feeling alot happier about how the next year may go with the OT's intervention.

cheesecake - Thanks for the link, we have bought alot of chewing items, we have a chewigem, chewy tube and some chewing bracelets and a necklace from the fledgings site.  I wish our CAMHS experience was as positive as yours, like I said earlier in this thread the psychiatrist we first saw was very against an ASD just because she can maintain eye contact. The GP made the referral to the same clinic I went to to get my Asperger diagnosis and we got a letter a few days later from them saying we were outside their catchment area and that they have referred her on to our local CAMHS unit(which she is already under). So of course I was furious phoned up and expalined the situation that CAMHS were messing us about and that both I and our GP felt it would be best if she was seen by autism specialists, I also mentioned the fact that I had been to their clinic earlier this year and received a diagnosis of asperger's so how could we possibly be outide their area. Apparently my GP had not mentioned the reason for the referral and that's why they sent it on to our local CAMHS, they told me to get my GP to send another letter stating why she wanted them to see her. So then I had to call the GP up explain all of this and do you know what, she was gobsmacked, apparently she did state that it was to asses her for Asperger's and she had even included the 2 questionaires I filled in (childhood AQ and the CAST test) so she was baffled as to why they were saying she hadn't specifically stated why she wanted her assesed by them. The GP said she'd send another referral letter asking them to asses my daughter for an ASD(again) but other then that she doens't know what else she can do as she has already sent a letter like that. So in other words now the autism specialists are screwing us about, it just all feels very hopeless we keep getting passed around and nobody other then the OT and GP are taking my concerns seriously.

sturry - See I'm 99% sure she is on the spectrum, I have Asperger's and she has alot of similar traits as myself, I have sensory issues but hers are more pronounced then mine. It just gets so tiresome telling so called professionals over and over again why I think she is on the spectrum it's like look I have Asperger's so I think I have some idea what I'm talking about! 

It's kind of a good thing that I'm on the spectrum because I can relate to her so much, like when she says her socks are annoying her I can understand why because I have the same problem. Or when she is crying and rocking and almost non verbal she is so upset I find it alot easier then my husband to understand what has upset her and why. I can also forsee problems, like this morning she is off to her performing arts workshop (she is obsessed with acting/modelling/dancing), I didn't feel too good so my husband suggested I stay at home and he'd just run her in alone...but I know how that could upset her because for the past few days we've taken her in together and a little difference like that can not make her kick off but can set her on a downward spiral so that every little incident would be a million times worse. For instance I knew yesterday she would have a bad day because in the morning we had a massive meltdown over her socks and hair brushing and as expected she didn't have as good a time and she insists one particular teacher was really mean to her and she hated it and didn't want to go back. It took most of the evening to get her to realise that it was probably just a misunderstanding and that the teacher was being a bit grumpy with everyone not just her.

I'm rambling now lol, I just hope the autism specialists actually give us an appointment this time and don't try and screw us around again because she needs help and she's at a crucial point in her life, she's just starting to have real problems socially and I think if we can get her help with that side of thgins she will hopefully not be as bad as me. 

I have a 7 year old boy and reading your diary comments and list of symptoms was like reading a chapter in our lives. He was, earlier this year diagnosed as being on the Autistic spectrum by CAHMS and we have experienced everything you have from the temper tantrums to their quirky mannerisms it is very hard and everyday brings a new challenge. We have been told things will get harder especially the teenage years and all they can do at the moment is support him with school and he remains under the speech and language therapist for block sessions once a year. More if needed. As for help with us the parents we were promised to be put on a waiting list to attend a cygnet group with CAHMS but a year on and we are still waiting, so this website has been a god send for help and understanding and advice on how to cope with just the daily routines.

Somebody said to me once who had a 19year old daughter with austism they were truely blessed as she was special. I think that we are blessed because they are special and we just need to live with them in their world and not try to get them to live in ours.

My son has just started with the temper out bursts that you mentioned and as he is getting quite big and strong now it is quite unnerving when he can pin me down. I have just had to learn which games we can play that wont allow him to get carried away or over excited. Which is a shame as I would love to have a rough and tumble moment with him on the rug. If I did I would be covered in bruises all unintentional.

We have had 5 years of eating pepparmi everyday one in his lunch box and one before bed and all hell is let loose if I buy the mini ones and when we have gone abroad we still had to have them, a nightmare trying to find a shop in Corfu that sold them.

I have gone through various types of sweat tops, t-shirts because they are scratchy even though he may have worn it once before then suddenly it becomes itchy and will blankly refuse to wear it even with bribery.

He has to constantly move around cannot sit still even to watch a film at the cinema he will be up and down and we have to find a seat where there is noboby behind us. He collects moshi monsters mini plastic toys and will become obsessed with stickers in albums the most current one olympics.

yet having said all that he can be very loving and say some beautiful things and we have moments when he will surpise us all with little snippets of information when we think he doesnt understand most things.

from an understanding parent who hopes you have a diagnosis soon because it will help you to get assistance at school.

Not sure if this will help, but this sounds like a typical day in my/my daughter's life so you are not alone.  We have just been told by CAHMS that our 8 yr old almost definitely has Aspergers (which we had suspected for a long time), now waiting for a clinic appointment in October.  We are struggling with her behaviour at the moment and don't always know where to turn for help.

For the chewing, we bought our daughter a Chewigem necklace which has really helped - otherwise she chews her clothes into holes!  It was recommended by a lady running an anger management session I attended, and it is brilliant, just looks like a normal necklace but it's there when she feels anxious and needs to chew. their website is http://www.chewigem.co.uk/ (apologies if we're not supposed to post websites, have only just joined the forum!).

Hope that helps even if just in a small way!

Hi again

Really glad you have got O.T. involved.  Certainly out O.T. is very knowledgeable and school staff listen to her (being a "medical" person), so acknowledge there are needs to support there, rather than what I have been saying all this time.

It sounds like you need to keep pushing this through till you get to the point of support or diagnosis (if that is what you want).

The Autism Clinic will be able to guide you effectively I am sure.  There is a lot of chasing up and following up on this journey with various specialists but it is worth the work to see a happier future for your child.

Best wishes

Social problems

She is becoming increasingly awkward in social situations, tells me about misunderstandings with friends, not understanding what the other children mean, not getting jokes, she says she no longer goes up to groups of children to play, prefering to play with children one on one. Falls out with her friends frequently because of misunderstandings or things she has said that were unintentionally mean. She can either be very quiet in a social setting of unfamiliar people or she will talk over people, she has no concept of being polite and waiting your turn (despite being told many many times). Her honesty can sometimes get her in trouble, such as stating the fact that someone is fat without thinking of how that will affect the other person. Will point and stare at people in public and can often shout inappropriate things out, such as pointing at a small person and saying they are a dwarf or upon seeing several wheelchair users laughing hysterically because 'it's funny that there are so many together' or pointing at someone (usually noticeably different such as a disabled person or physically deformed person) and then asking us why that person is like that (again we have told her this is not appropriate but it doesn't register).

Obsessions

She is currently obsessed with Monster High (has collected almost all of the dolls), has had a lifelong obsession with Teddy bears (each one has a name and she will not give up any, as a result has a few hundred bears spread out between relatives houses).

When she finds a new 'thing' she obsesses over it and that becomes the target for play, talking and collecting, currently she is on the 'trash pack' and is building up a small collection, likes to include them in play and talks about other kids at school having them.

She likes to watch the same episode or movie over and over again. When she gets stuck on a film she will watch it every day for weeks (usually starting at a specific point rather then the beginning). Same with specific episodes of TV programmes she likes, she would rather watch the same 1 or 2 episodes over and over again then watch a new one.

Sensory

Has issues with sound, textures, taste and touch. If there is alot of noise for a continuous amount of time (such as in the dinner hall at school) she becomes overwhelmed and says she feels 'dizzy' because of it. She does not like certain fabrics or the feel of certain things, she refers to tastes she does not like as 'minty' despite the fact she likes mints (such as polos). She is not overly fond of hugs, she is affectionate towards myself and her father but will do her utmost to avoid hugs from other people, she says they make her feel wrong. She is extremely sensitive to pain, the slightest bump, scratch etc will have her crying and afraid to engage in the activity that caused it and the idea of pain will render her hysterical (such as injections)

Literal thinking / Explanations

She has issues with sarcasm, jokes, play on words etc. for example if I say we need to 'kill a bit of time', she will need an explanation as to what I mean. Or if someone was to jokingly say that her eyes will go square being so close to television or she can talk the legs off someone she again will need a thorough explanation or she may become confused. 

Her teacher has commented many times that she is a 'visual thinker' and needs things explaining to her more then once or in a different manner. This is also true at home we may need to explain things in a different way, or more visually for her to understand what we mean. 

Routine/rituals/sameness

She has certain routines and things that she likes to be the same or she can become a little distressed over them. Such as her bedtime routine, if we forget to put her cream on she will be awake for a while before finally coming and telling us we didn't do her cream. She has to have a specific item in her hands when she goes to the bathroom, the light cannot be on either.

She likes to eat the same foods over and over again, becoming stuck on certain things for weeks or months before changing(and you cannot substitute, for eg if we buy tesco strawberry water she will not drink it, she will only drink volvic). Such as her favourite biscuit is bourbons and she would sit and eat them all day if we let her, she never tires of them. She will only drink strawberry milkshake or strawberry water (or plain water). She used to love eating raw carrots and would get through several a day for weeks but then she moved onto another food. At the moment all she will eat for her lunch is a bread roll, she will ask for a ham sandwhich, remove the ham and just eat the roll. When she gets stuck on a specific food it is all she wants to eat and despite liking a variety of foods she will always choose to have just a select few things to eat.

Repetative motions and sounds

When stressed she will chew on her thumb or twirl her hair around her hand. When deeply relaxed she chews her thumb and sometimes rocks, she also has a tendancy to zone out and you have to call her a few times to get her attention. At the moment she makes a clicking noise frequently but also sucks her teeth and says "uhm" every few words when at home relaxing. When playing she will use the word 'pretend' before any speech, such as "pretend this doll did this and then pretend he said that and pretend that made her do this", unsure whether the same is true in school. If I don't repeat what she has said exactly or make the dolls do what she's asked then she becomes annoyed. She likes to direct play more then take part in it (it always revolves around school or a movie she's seen).

Other

Collects strange things such as sweet wrappers, packaging from things as 'it's interesting' and she likes to make games out of them. Such as keeping the wrappers from maom sweets to use for a 'card' game. She also finds patterns or interesting shapes in things that she likes to keep or colour in, such as toilet/kitchen roll.

This is just a few small examples, there are many more 'quirks' to her and I could expand on alot of what's been said but briefly these are what I consider possible traits.

I have't been on here for a while so missed your comments.

Some days it' shar dknowing what is 'normal' behaviour and what might be an indicator of something else entirely.

We were not getting support at school, without an offical diagnosis it was up to the teacher when she thought my daughter really need time away form the class to calm down(because the noise was overwhelming).

We saw an occupational therapist last week who from just being with her for an hour and a half said something definately wasn't right. She's going in to her school in September to tell the teachers what they have to do to help her. She really struggles with noise and it affects her concentration, she also finds it hard sitting still for long periods and just having a quick burst of movement can help her concentrate more. Again just from being with her briefly the OT could see the need for movement and will be advising the school on activities she can engae in (even little things like carrying equipment, stacking chairs etc will help).

I spoke to our GP again who has agreed to refer her directly to an autism clinic because CAMHS are messing us about when it comes to any kind of diagnosis. I gave her a list of what I considered possible traits (I'll post those in a second) as well as a few tests I did (the childhood autism spectrum test, childhood AQ) and the above journal.

It just infuriate dme so much that the psychiatrist we saw was very against it being ASD because she can maintain eye contact, that somehow that makes the other things null and void. Hopefully we won't have to wait too long until she is seen by someone who knows what they are talking about.

Hi

I have read the first couple of days in detail and skimmed over the rest as in a rush but I know you are looking for reassurance.  Some of the incidents I personally would have seen as very typical of any child i.e. the reaction to a wee nick during nail cutting, however many others would be more like the kind of traits and behaviours of someone with ASD, Sensory Processing Disorder (noise, touch of clothes) or similar, but I am no expert.  Just a parent that reads and learns as much as I can as my 10 yr old son has Aspergers/ADHD with some sensory processing aspects. 

Whatever the outcome, your wee girl is struggling at the moment and needing support as are you.  It is very draining dealing with the emotional reactions and trying to be 2 steps ahead and learning all the time.  Are you getting support at school?  Outside school?