newbie looking for some friendly advice............

[beverleyjayne]

hi everyone, i have lurked for a few weeks now and hope someone will have a few words of advice or hope for me and mine. my daughter is 10 and from an early age we always thought she was an awkward demanding child, she ruled the house basically!! i was never really allowed out of her sight, and when she went to nursery school the teacher commented on her and how she always seemed to have the weight of the world on her shoulders, still does. a few years ago she was dx as having abdominal migraines and takes sanomigraine for them. anyway recently she has been taking the migraines every month and getting very depressed when suffering from one. we can always tell when they are coming as for a week before she is very pale, tired, and badtempered. we took herto the doc and he referred us back to her consultant. i went with the hope that he would refer her to some kind of counsellor that could talk to her and maybe help with her confidence. however he told me that he thinks that there is def something wrong with her and advised me to go home and read up on ocd and he also mentioned as, saying that he didnt think that she was autistic but that it was a wide spectrum and they would look at that too. he has referred her the child mental health unit and we have got our letter back saying the list is 3 - 6 months long. anyway after the shock of all that i did go online and read up on both conditions and i have to say that she has traits of both ie, when riding her bike she does 1 circuit and if something gets in her way she will stop and wait till it moves, not her. sarah hates being touched, hugged, looked at and finds it very hard to deal with everyday ups and downs of school life, ie minor fallouts etc. she also hates change to her routine, for example this year i put my xmas cards up with ribbon instead ofthe usual blu tack, she hated it and kept going on wanting me to change it. i am sorry that this is so long and rambly but my heart is thumping as i type, thanks for reading and if anyone has any thoughts, advice on any of this, even the abdo migraines please reply.

thanks
bev

[siblingrivalry]

Hi Beverley, and welcome.
My dd is 8 and has some similarities to your dd. It's hard to say whether she has an ASD, as she will probably see a few different medical professionals before a diagnosis is made.

If it helps, I will tell you briefly about my dd. She has Sensory Processing Disorder and part of that means that she doesn't like being touched/loud noises/smells etc. She also found it incredibly hard to deal with school (we now Home Educate her) and struggles with change. She also has a diagnosis of Generalised Anxiety Disorder, dyspraxia and dyscalculia. She was assesses for AS but it has been ruled out. There are a lot of 'crossovers' with ASD and other conditions, I think.

I doesn't sound as though your dds consultant was much help, to be honest. In my experience, your GP needs top refer her to a paediatrician, too. If she has sensory difficulties, an Occupational Therapist is also necessary -dds is amazing.

I know it is really worrying -the wait before a dx is confusing as you don't know how to help your child.
The best bit of advice I got was to become a 'squeaky wheel' IYKWIM - I quickly latched onto that one!

Good luck, keep posting -this board is incredibly supportive.

[beverleyjayne]

hi siblingrivalry, thanks for replying.

my gp did refer her to a paediatrician, that was the consultant who has referred her to child mental health unit, but they have a 3 to 6 month waiting list . dd is off again at the moment with another abdo migraine so i am waiting on the paed ringing me back, fingers crossed for tomorrow. when you say squeaky wheel what do you mean (blush). we try now to ignore dd behaviour when she gets cross if we look at her or ask her a question, these are the things that she hates. at the mo as she is off school she is so down and just lies in her bed so we dont know what to do to help her. can i ask what the occupational therapist does for your dd, wondering could i ask my gp about that. sorry for all the questions, just really dont know where to turn at the mo. my dh justs thinks dd is odd, whereas my mum who also lives with us already has her dx, and sees everything that she does as a negative

[siblingrivalry]

Ask away, beverley -that's what I did when I was waiting for dd's dx. By 'squeaky wheel' I mean that I basically became a -pain in the arse- pushy person and chased up appointments, reports etc. The receptionist at our local Child Development Centre is on a first-name basis with me!
I kept a diary of all the worrying behaviour while I was waiting for dd's first appointment, cos I knew I wouldn't remember it all. It helps the doctor to build up a good picture of your concerns.

The OT my dd has diagnosed her sensory problems and put her on a programme to help to desensitize her a bit so that she isn't so overwhelmed by things going on around her. She also loaned us specialist equipment (eg a theraball, as dd is sensory-seeking too and always looking for ways to throw herself around _literally). She has also put her onto a 'listening programme' as dd has auditory processing difficulties.

All of this made dd very depressed and anxious -that's how your dd may be feeling?
She has trouble sleeping/headaches/tummy pains etc.

The way family react is another issue, isn't it? IME, a lot of DHs are in denial that there is any kind of problem -mine is still struggling with it. Eventually, when the 'experts' confirmed things, he started to take it on board.
My PIL thought I was just over-anxious and made excuses for all of dd's quirks. They are coming round a lot, too. It takes time, though and I think you just have to trust your instincts. You know your dd better than anyone, so you are best placed to know what is best for her.

When I first posted on here, someone told me "You are your daughter's best and only advocate" and that stuck with me. However worrying it all is now, once you all know what is going on with your dd it won't seem so scary -you will be able to access help for her and put strategies in place which are specific to whatever dx you have for her.
x

[PlainOldPeachy]

Welcome to MN

ASD's are often misunderstood by non practitioners in that area; you need to look at the triad of impairments (I like the one on the national autistic socirety website, clear and easy to find)

I ahve 4 sons, 2 with now diagnosed (after a long wait) ASD's: any question fire away, someone on ehre will know.

[apollo11]

hi beverly,

since the new year we have began to realise that our ds2 probably has ASD. i know its a big shock, but MN is great for support and advice.

i felt like screaming for a fortnight, but on the plus side, i've lost that last stone that had been hanging about since my last baby!

hang in there. i'm just doing loads of my own research and reading while waiting for dx.

[beverleyjayne]

hi everyone, thanks for taking time to reply.

now that i have put it in writing in MN i dont know if i feel better or worse!!

siblingr i am going to buy a small diary 1st thing tomorrow just to keep notes in till we get our first appt, i think that is a great idea.

appollo11, can i ask what age your ds is, and how you began to think he had asd. i still feel like screaming and have taken to going on long walks for an hour just to get my head sorted iykwim. i am reading loads, but everything i read kinda reminds me on dd and i just dont know how they can fix her, im sorry if that sounds terrible, but i just want her to be a happy normal 10 year old

plainoldpeachy, i have looked at the triad and can see different things that refer to dd.

since dec 22nd when we seen the paed, our world has just been torn apart, and typing this i think, god it could be so much worse, they could have said she had a brain tumour or something else, but that only lasts a minute, and go back to feeling blah.

sorry i am rambling again,

[PlainOldPeachy]

our feelings are totally the norm.

Even if you know a dx is coming it hits you like a sledgehammer!

It's much like bereavement as a process except that we are blessed to still have our klids to hug tightly of course.

Be gentle on yourself, thats all you can do.

[cherrymonster]

just a quick question- is it not possible at her age that she might be getting period pain and a bit of pmt?

[misscutandstick]

cherrymonster, i was thinking the same thing! That along with other difficulties as well that shes coping with.

[beverleyjayne]

hi again, sledgehammer is the correct word, that is just what it feels like plainoldpeachy. and it justs keeps coming back and hitting you again and again.

cherrymonster and misscutandstick, thanks for replying, unfortunately i said that to the paed but he said no that there was definately something there, be it ocd or as and that is why he has referred her on to 2 different places with the child mental health .

at the beginning i kept telling myself that was all it was, but the more i read and the more i remember things she does and has done the more i think there is something wrong.

[claw3]

Hi Bev and welcome

The headaches could be because she is hypersensitive to noise. My Ds has sensory issues and tells me when children scream, shout or sing, he gets a pain in his head (he is 4 btw)

It has taken my over 3 years to get where i am today and my ds still doesnt have an official dx. During those 3 years ds was wrongly diagnosed with autism and also refered to CAHMS.

We are currently seeing a OT, who suspects sensory modulation disorder.

[apollo11]

hi there, sorry, ran out of charge last night.

my ds is 2.8. i was actually taking him to see the SALT because he isnt talking, and the night before i posted on MN and got some advice and queries re. ASD. the next day the SALT wanted to refer him to the community paediatrician, and since then....
well, i started reading and suddenly realised i'd been making assumptions which led me to believe he was ok (eg, he's very affectionate). i now know this does not preclude ASD.

in my defence, we have just wanted to believe the best about our son, and we are having a crap time in other areas (my mum recently went into a hospice so we have been preoccupied).

i think these things too about other illnesses and stuff, but we are definately grieving for the child which we will never have, but we actually have never had! (does that make sense?)

there is actually an article in this weeks sunday (glasgow) herald magazine about a father who has just got a dx for his child and its a very good article and feels very timeous to us!

and then rainman was on last night!!!!

sometimes i think i just cant deal with all this stuff, but then i know i just have to.

i am going to start keeping notes too. it does seem like a good idea, thanks.

[beverleyjayne]

hi again, claw3, she is defo very sensitive to noise and always has been. i rang the paed today and he has upped her meds to 30ml daily and said that he would ring CAHMS and see if he could hurry the appt up. i also have to ring him in a weeks time to update him again. i also got an appt in today from the child development team, we go see them in a fortnights time, i rang them today and they will do a griffiths test on her and will be able to tell more from that...........

apollo11, thanks for coming back again, i am sorry to hear about your mum, sending you lots of hugs xxx. i think grieving for your child and the child we have never had is correct, that is what i am feeling like. i went and bought a diary today and am just going to keep all my notes and thoughts on dd and hopefully it will help me and help whoever we end up dealing with.

hopefully tomorrow will be better...

thanks again

[claw3]

Bev - Thats good news, sounds like you are making progress. Good luck at your appointments, hope you get some answers