Am I being precious or should I be looking for more?

[BiddyPop]

Firstly, I am in Ireland so we don't have CAMHS - or at least, it's not a route we're being sent on.

DD has a dx of ADHD/Aspergers since last April, after us having concerns for some time (been seeking help since before she started primary, now in her 3rd year there - I don't know how 1st class converts to UK system).

Assessment was through mental health system, and that is where we still are (Lucena clinic). DD has meds for the ADHD (and sleep), and is getting a social skills programme through resource hours in school. I know the skills thing takes time - I am not looking for miracles there.

Clinic has no resources to help asp part. Appts are to come in, have a quick chat ("how are things, did you do the incredible years course yet?" type chat), measure and weigh DD and send us off with new script for another 3-6 months. Clinical psych rather than a Med dr.

I cannot find the 1 course she recommended (resources generally reduced, and the ONLY 1 I found was 1 morning per week for 14 weeks, I work FT so cannot do that length of committment in work time). I am taking a day off to travel 160 miles to do a course in June that I hope will help (it's not "THE" course, but is for ASD specifically). But there is almost nothing I can get locally. Help clinic promised in terms of finding courses for me hasn't materialised (she seems to forget every time).

I am also concerned that there doesn't seem to be any kind of long term plan, despite us saying that we want at least an idea of one. It seems like it will be meds for life and that's it. In fact, we were being offered extra meds yesterday to get over the evening hump (long acting ritalin wears off and DD goes hyper, right at bedtime - changing timing not possible as she takes it just before school).

Sorry this is so long.

I am wondering if I should be looking for other things to help DD. Should I be getting a paed who specialises in neuro to look at her (I was given a recommendation by a friend who is a children's nurse), or if there are other things I should be doing, especially to try to help with the asp side of things (and finding ways to deal with the point-blankness of her refusal to see anyone else's POV at times - think Sheldon Cooper and you've got DD at times!).

I cannot go on dealing with it all. DH is away overseas 50% of the time. He came down from bedtime on Tues (1st night he did it at home in almost a month, as he was away for 3 weeks and we had long weekend away with family) and said he doesn't know how I can deal with it. He was losing the rag after an hour up there. We cannot choose something on the tv other than the Simpsons at 7pm, no matter what anyone else might want to watch (or listen to radio instead) - it's the Simpsons. She rules to roost on food (it was the "wrong" curry sauce the other night, even though she likes it and was from the local curry house, but it wasn't the one she was expecting from that place, so she refused to eat it - we got half a dinner into her, but mealtimes are so fraught ALL THE TIME). We cannot go out as a family because there will be some problem that she'll cause - 1 parent or the other alone is usually fine, just not both together.

I need to make sure she eats enough - she is so skinny and small anyway and the meds have reduced her appetite further. I can't go on cooking different meals when she turns up her nose at the planned meal - but I need her to eat! (And at the same time, I am overweight and need to lose a couple of stone, so I don't want to overload the main meal for us all). And make sure it's a healthy diet and not giving her things that may not be helping her (not just general health but neuro related).

It looks like we may have to reloacte overseas (possibly ME or US), so I need to have things in better shape before we go in terms of my understanding and family ability to deal with it all. In case there is less support where we go. DH works overseas 50% as it is, and I work FT here (and would likely work abroad, although maybe not initially).

DD is HF, her speech and academics are good, she plays a lot of sports. But parts of her coordination could be better, she has a little bit of excema, getting to sleep is hard, and just all sorts of little bits.

AM I being precious, or should I be looking at trying to get someone to look at the whole picture? Thanks if you are still reading this far, any views are welcome.

Oh, and she constantly gives out about physical pains (joints, muscles - and lots of headaches) - which may actually be physical pain at times but often seem to be around anxieties and emotions - which is completely ignored by the psych. I can't keep giving calpol, and I can't just ignore it either.

I think you should ask for a second opinion especially as she is on meds. Could you afford some private therapy for to help with her anxieties and rigid behaviour? Perhaps an occupational therapist or a play therapist with specialism in autism.

Is there a local support group or charity in your area for advice and moral support?

I would take her seriously about the pains and get her checked out by a gp. It could be a side effect of meds. Or even hypermobility syndrome.

Perhaps things might be easier abroad as your dh would be around.

I think you need to compromise with her on the control thing as she needs to feel secure but not rule the roost. Sorry that's not very helpful - it is something we struggle with too.

I think you should ask for a second opinion especially as she is on meds. Could you afford some private therapy for to help with her anxieties and rigid behaviour? Perhaps an occupational therapist or a play therapist with specialism in autism.

Is there a local support group or charity in your area for advice and moral support?

I would take her seriously about the pains and get her checked out by a gp. It could be a side effect of meds. Or even hypermobility syndrome.

Perhaps things might be easier abroad as your dh would be around.

I think you need to compromise with her on the control thing as she needs to feel secure but not rule the roost. Sorry that's not very helpful - it is something we struggle with too.

Hi Biddypop, I'm in Ireland too with a son with ASD. We get no support services either, that's pretty much the same around the country. My DS aged nearly 7 was diagnosed through the Early Intervention Team but I know other children diagnosed through Lucena in Rathgar, Dublin. Your DD could be put in with the school age team in your health centre where there'd be Psychologist, OT, Physio and SLT. We haven't seen them at all, I think you have to ask for services from them. I have never heard of long term plans being offered, everyone pretty much just plods along. I do agree you need to see your GP about the joint pains to see if its a side effect of the meds or if it's something like hypermobility.
What course are you going to in June do you mind me asking? Is it the Middletown Autism one in the Helix, DCU. I went to one of the training days last week and it was brilliant. There's also a conference in Dublin on 3 & 4 April, Temple Grandin will be speaking at it amongst others but it's expensive, the Middletown Autism ones are free.

It must be incredibly difficult for you with your DH away so much, I'd be tearing my hair out. I do cook different dinners for my DS as he doesn't like rice or pasta and we eat that a lot so I either have some stews or fish in the freezer to heat up for him. I also have teenagers so am now used to them telling me they don't want to eat what I've cooked (I wouldn't have tolerated that when they were all little but now they're grown they can cook their own if they don't want whats cooked).

When we go out as a family it's generally something that will keep DS happy and we do what we call "tag parenting" - one of us keeps DS happy while the other is with the other kids and we swap if it gets too much for the other parent. It's not ideal but it works most of the time. We are visiting London in the summer and I'll take DS to the NHM to see the dinosaur fossils while DH takes the others to Harry Potter Studios - I'd love to see that but if DS is happy and calm then we're all happy and calm.

Are there any support groups near you, it's really good to have a chat with other mums in a similar situation. Have you had a look at autismireland.ie and aspire.ie they might have links to local support groups or might be able to steer you in the right direction. There are also special needs sections on www.magicmum.com and www.rollercoaster.ie forums (am I allowed put that here) where you might find people in the same area too. Mumsnet is brilliant as I get so much information here even thought it might not all be applicable to Ireland. Sorry for the length of post.

Thank you all so much for replying.

APMom, we've never seen a SALT, OT or physio in this - it's the SN teacher in school (who moved to SN from JI 2 years ago, having had DD in JI, and had DD's class as 1 of her SN groups since) and Clinical pysch in Rathgar.

MM has been banned so long at work I keep forgetting about it (I rarely have net time at home), and I barely ever looked at RC but it was way before SN even entered my conciousness. I must make time to look again thanks. I'm doing a Middletown course but later June in Cork (I was going to try the Dublin one too, but need to ring as it would only let me book 1 - on my list this week - Cork seemed more immediate to my needs right now). I must look at the other groups too.

We'er lucky in a way - it's only DD, DH and I - it's just the playing us off when we're all together . And I often do different foods for her - it's the changes from 1 day to the next about what she will or won't eat that is difficult.

Poltergoose, we manage ok with childcare (she is fairly HF and in MS school and creche, and we've been lucky with all 3 au pairs so far since DH started travelling). (And my job is the permenant one, so I can't step back in the current climate). I have enough flexibility for appointments - it's just a block like that for a long-ish course. But I might have to just suck it up and tell my boss I need to use my leave that way. (His DW was able to do courses at night when they were starting this road - but resources are a lot scarcer now so I can't find any).

I'm not trying to rush in and find the magic solution - I am just trying to find possible options to even help me understand HOW she functions differently so that I can tailor my requests and reactions to her so that she can respond to them. But yes - the deafeningly silent rush of blank air as we got shoved over the edge of the cliff with this new reality has been interesting!

DisAstrophe, I do let her control an AWFUL lot to avoid stresses and meltdowns. But I need to find some way to have SOME control - for things that occasionally I need/want, and also to be able to deal with it when things change (like the time that C4 decide they want to change schedule and Simpsons is no longer on at 6pm daily). Or when things are more uncertain, that DD can take that in her stride a bit more (even say the day that I am late home so can't cook a dinner and get out a tin of spaghetti - which she loves - but that's not the dinner on the "list" for today (rough weekly menu I do at weekend) and we have a meltdown because that's what we are supposed to be having).

And thanks on the pain - it's worth getting that checked as a specific thing, which could lead me into the option of getting a full assessment with neuro paed (to make sure all MEDICALLY is in order, not just mentally, IYKWIM).

Lots more to think about yet.

Biddypop sounds like you have a plan! .