Feel like im hitting a brick wall

teabag29

Hi. Some of you may have read my previous threads about my dd and her behaviour and learning problems. I have now had 3 camhs appts and they went over everything with me and agreed dd shows asd symptoms and seemed to be taking me seriously until they received the e.p report last month which highlighted that dd has serious learning difficulties (school told them she was an average student and i stressed for them to wait until they see ep report as school arent being honest). Basically the report shows how dd's overall learning os on 7th centile and her ages range from age 5 (memory) to highest age 8 years 4 mths (reading) all others fall in between these ages (dd is actually 12 years 10 mths and doesnt even know her alphabet yet). Anyway once camhs saw this they changed their thoughts and said we feel her problems are educational and its school who need to be helping and basically discharged her.

I'm so upset. DD has almost every symptom of aspegers and very difficult behaviour and many of these things cannot be explained by learning difficulties i.e camhs said the reason she doesnt wipe herself after toilet or have a bath is because she doesnt know how to properly because she has learning probs....i tried to explain this is not the case at all, she wont even let me bath her she screams kicks bites and damages the bath to try and get out of having one. I said how does learning difficulties explain the other symptoms not relating to learning then such as the hand flapping, wont eat anything with a soft texture, wont wear socks,takes things literally, cannot get on with other kids and the many other symptoms but they just said a diagnosis isnt important whats important is she gets the help. However school refuse to give her extra help except an hour a day literacy as they have a high level of sen kids and no funding. She is also being bullied but they say they cant do anything as my dd does things to trigger it i.e she says what they call nasty things.... what they fail to understand is she doesnt know what shes saying is nasty as she has no empathy, she just thinks what shes saying is fact for example if she sees someone large and they say do you think i look fat she will say yes....she doesnt understand social rules and that perhaps this isnt what the other person actually wanted to hear.

I fel at my wits end. I have one last agency involved now and that is an appt for her to be asessed for dyspraxia next month with the paediatrician at a different clinic thanks to the ep report. I dont doubt she has dyspraxia as she has most of the signs but i think there is more than that. The appt says 30 mins long. Do you think if i told the paediatrician about my concerns and all dd's symptoms and how camhs dismissed her once they realised she had learning probs that he would look into asessing her for asd or will he simply only look at the dyspraxia what the appt is for?

Allegra

You can only try, teabag. I am sorry to hear that you are no further in getting your DD the help she needs and that CAMHS were not very helpful. I very much sympathise, as I am still in a very similar situation myself - in fact, we stopped the CAMHS counselling "help" last week as DD felt - and I wholeheartedly agreed - that the "help" was actually making things much worse.

I am at a loss what else to suggest for you, really - assuming that you have tried everything that has been suggested in your past threads, and I don't doubt you would have done - apart from perhaps going private, assuming that you can afford it (we can't). Apart from that, carry on learning about ASDs yourself - it's not going to do any harm, and ultimately, as I have found, the diagnosis really does not make that much difference in terms of help that can be accessed, and the bulk of support and care will always be on the parent, label or no label.

pigpen

Appeal!

I personally found CAMHS to be totally useless.. they simply do NOT want to know they dont want to do their job and I dont know ANYONE who has found their services useful! They just fob you off and waste your time.

is it a hospital paed. or a community Paed? she is seeing.. the latter can refer elsewhere easily and quickly and usualy covers a broader range of difficulties so you may find the comm. paed. more help than the hospital paed who will have less time and a greater work load and unless it is their pet topic less interest!

I would be contacting the LEA about a statement for your daughter.. you can self refer but it takes forever to get through.. and speak to the autism unit at the local special school, they may be able to offer some further direction about what is usual in your area!

and make an appointment to speak to the ed psyche and senco about the report you have got and what they are going to do about it!.. A piece of paper saying there are these issues is all well and good but if it is going to be ignored then something needs to be done.

peachyprice

teabag29 wrote: »

Do you think if i told the paediatrician about my concerns and all dd's symptoms and how camhs dismissed her once they realised she had learning probs that he would look into asessing her for asd or will he simply only look at the dyspraxia what the appt is for?

From my experience of the paediatrician at the CDC, they will look at all her problems not just they dyspraxia.

They should start without any preconceived idea of whay may be wrong with her, and IMO, whoever referred her for dyspraxia should be shot, she should have been referred because something isn't right, not because that's what someone thinks is wrong with her.

I doubt very much that the appointment is for a diagnosis, it takes assessment from other people such at occupational health to reach a diagnosis and it can be quite a long process. However, the paediatrician should be assessing her for everything possible, not just dyspraxia, they will most likely take blood tests to rule out chromosomal abnormalities that can lead to certain syndromes with similar symptoms (sorry can't remember which, it was a long time ago my son wenth through this)

They will (should) start at the very beginning, asking about your pregnancy and the birth, her early years, her behaviour, your other children etc and take it from there. Take all the reports you have and write down all your own concerns, it's easy to forget to tell the doctor something and kick yourself about it later.

It's sad that you see this as your last resort, this is where you should have been sent at the very beginning, when you first noticed she was having problems.

One thing to remember, the paediatrician has no agenda, she has no reason not to do her best for your daughter, she doesn't have to worry about what finding schools have or CAHMS budgets, her job it to find out exatly what is wrong with your daughter, nothing more, nothing less.

Bumpmakesfour

Sending you hugs..it really is hard when it feels like absolutely no-one cares about the issues your child is having xxx
Can't advise on the CAMH bit as we have only just been referred for DS(8) as his meltdowns are getting steadily worse.DS is under a paed but there simply is no-one else in the area to see him.Final straw yesterday when he ended up being physically restrained at school and carried in by teachers.
I spoke to a really helpful guy at the NAS,have you tried calling their advice line?I also had a great chat with a service called young minds who are full of super helpful advice and contacts.I'll post the numbers if you're interested.
Do you have a parent partnership in your area?They can help you start off the statementing process and accompany you along to an meetings at school.What's your relationship like with the SENCO at Your daughters school?Have you looked to see if there are any ASD support groups in your area?
With the initial appt did you have a set of forms to fill in that the school had to fill in too?

Unfortunately services everywhere are being cut badly and getting help seems to be getting more and more difficult.My son was dxd ADHD/aspergers/Dyspraxia/Sleep disorder in year 1...here we are in year 4 and still not seen an ed psych:mad:
Always here to listen if you need a chat xxx