Can I ask some silly questions?

[BiddyPop]

Pretty please?

Let me start by saying that I do NOT mean to be offensive to anyone, and I am asking these from a state of ignorance - and wanting to be able to answer others who ask in a semi-reasonable way. This is partly trying to figure out what we should expect now and how to help now, and partly trying to see what lies ahead.

DD has finally gotten a dx of Aspergers/ADHD, with underlying anxiety, almost 3 months ago. We are still waiting for the ed psych report (which we had to get done privately ???!). The clinic which assessed her don't deal with AS and have given her meds for ADHD. (We are in Ireland not UK if that makes any difference).

I know there are lots of needs and far too few resources - but we've felt very rushed in all dealings with "professionals" on this so far. And we've actively sought help.

I understand that both are neurological disorders. I know that means that, effectively, she is "wired" somewhat differently to DH and I, (and possibly more to the general population than that :) ), but she is still a lovely girl and the same person she was before.

School will, hopefully, have resource hours for her next year, and will use those to work on social skills (academics are fine at the mo). The meds have helped to calm things down a lot, we have come to understand even before DX that focussing on praising the positives works while coming down on the negatives just flows over her head unseen. We are trying to ensure that when we are doing something different, we let her know in advance that routines will be different - and give her a chance to know of unexpected changes ASAP and give her time to absorb those if we can. Overtiredness means easier over-stimulation, and we are getting better at seeing anxiousness in action before a problem happens. School, creche and ourselves are all better at giving her quiet time to unwind rather than escalating issues - while still maintaining discipline and instilling good values.

What should we expect by way of long term supports and actions? Are there things we should be doing with her to help? What will extra assistance in school look like - what will she be doing and how can we support that?

Is she likely to be on drugs for life? Is she likely to "grow out" of this? (I know this is probably not likely, but in the reading I have done, I can't see much by way of real practical help beyond what both actually are and how to diagnose it). And while I instinctively feel that it's neurological so she will always have the same pathways (ok, she's not a computer, but it helps me to see her brain that way - tell me if that's WAY off beam), but that she may learn ways to deal with everyday life so that she desn't need the meds and can "appear" at least like everyone else around her.

I dno't know - I'm probably not even asking the right questions or explaining myself properly. I know I am burnt out between her, very stressful work (trying to implement economic recovery), DH travelling overseas and having very stressful work, au pair (generally having an extra, nice but extra, in house and her leaving early as friend at home in hospital), income cut and expenses going up, both my grans are dying, and having been in car crash at the weekend (was rammed from behind and hit car in front - I'm ok apart from whiplash but car needs lots of work done).

So in trying to even start figuring out what's going on and liekly to happen with DD, I am feeling utterly lost. And when we DO get a chance to talk to professionals, they have their own agenda and very short timeslots to try and figure everything out. And there are so many who need help (at clinic and even at school) that I don't want to be someone who takes up all the time and just asks "stupid questions".

Even if someone could point me to useful websites or a good book that is written with parents in mind (I understand plenty of science stuff as I did biochemistry in college, and have a serious job requiring plenty of brain power - I just don't want a textbook aimed at a pysch or a "touchy feely happly clappy self help" type book that is short on facts and real help).

Sorry this is so long and rambling - if you even understand my questions, that is. And thanks in advance for any thoughts.

I would recommend, The complete Guide To Asperger Syndrome by Tony Attwood.

Multicoloured Mayhem by Jacqui Jackson who is a mum to 7 children 4 of whom have various conditions including Austim, ADHD, Aspergers and Dyspraxia.

Freaks, Geeks and Asperger Syndrome by Luke Jackson one of Jacqie's sons. He wrote it when he was 14.

Got to dash, but Simon Baron Cohen and Tony Attwood books are good for kids like your DD. His (TA's) book Kids in the Syndrome Mix is particularly useful.

Sounds like you have a to to process and deal with. Also sounds like you're doing pretty well with her at home. We try to take the same approach with DS1 (ASD/ADHD and horrible, horrible anxiety. We suspect PDA) but will confess, it's very easy to run out of patience. The help he gets at school is full time 1:1, which he needs because he struggles so much to be aorund other children and often refuses point blank to do any work and he can easily blow up.

Will come back to this thread, later.

Thanks - will look for those books to have something to start to get a handle on.

DD is in senior infants (2nd year of school) after 4 1/2 years of FT creche (including 2 yrs montessori). There are 27 kids in the class, 1 teacher, 1 TA - another kid has downs while there are others who would have other difficulties (MS but "educate together" which is generally more inclusive anyway). So she doesn't get any particular help yet directly, but teachers aware (we started asking for help before she went to school, her previous teacher is a SN teacher this year and DD's class is one of hers) and do what they can. They hope to have resource hours next year specifically.

She is fine academically (some numbers and letters backwards - but teachers say most kids do this at this age). Its social skills and anxiety and meltdowns when over-stimulated that are the problems mainly.

What is PDA? (Pardon my ignorance).

There is far less shouting now than there was maybe a year ago, as we have realised that it does little except raise tensions in everyone. We do still lose it occasionally, but less than before. We try and show patience, calm, talk it over......but I am down to so little time to myself in the month that the 10 minutes once she's settled at 10 pm are sooo important to me - even if I have to still face washing up, laundrey, making lunches and organising dinner for tomorrow then (and maybe tonight's dinner for me).

But I have so little time for anything, and get asked "stupid" questions that I feel like I should know the answers to and I just haven't a clue....

I will look for those books though, thanks

PDA is pathological demand avoidance. He wouldn't get an official diagnosis, since that and more is covered by his autism diagnosis, but for DS1, it means that all the standard ways of helping kids with ASD - visual prompts and timetables etc - aggravate him and increase his anxiety. If he doesn't want to do something, there's very little chance of persuading him and sometimes, even if he does enjoy something, he'll have nothing to do with it if he perceives that other people really want him to do it. We can't even go overboard with praise for something he's done well - he'll instantly lose interest! He has a very strong need to be in control.

That time once the kids are in bed and asleep is so precious, isn't it? If DS1 is ranty and/or DS2 screechy, I finally feel like I can breathe again without setting something off.

No questions are silly and I for one will be reading the answers.

My DS1 (8) is ASD almost certainly aspergers but we are waiting for an official diagnosis which i think could take months. He is currently a referral on a desk at a children's centre somewhere waiting to be handed over to Midland Psychology but apparently they only hand them over once a month! Hopefully the hand over is next week and we can begin our 8 week wait to be seen

I don't know what all the abbreviations mean either!

Just to make a suggestion re the medical professionals... don't EVER feel bad about asking questions. If you feel that you are rushed and cannot remember things you want to ask, jot down a list of questions you want to ask and bring it along to the appointment.

We ask all sorts of questions of DS2's paed, OT, SALT, etc. They generally are quite good about answering them as best they can, and if they can't then they refer us to someone who can. It's their job. And as a parent, you have to brace yourself and just wade right in asking questions - it's the best way to protect and provide the best care for your child. No decent medical professional is going to be angry about you asking questions.