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DD1 dx with ADHD in July, DD2 dx with AS last wk!

(16 Posts)
HouseAtreides Thu 31-Oct-13 13:17:36

It's all feeling a bit odd.
I have been trying to get DD1 (12) properly assessed since she was 4. Finally, after seeing a paediatrician for something unrelated, she was given the diagnosis of inattentive ADHD. The consultant was looking through her records, shaking her head, and said "I can't believe this has been left for so long. She is literally off the charts!" The assessor totting up teacher/parent questionnaire results had had to write extra numbers at the top to circle. FFS.
So, now we are trialling Equasym and I am trying not to be bitter that her whole primary education has been seriously affected.
DD2 (almost 7) has just been given a diagnosis of mild Aspergers after her school teachers put forward some concerns about her behaviour. Having only DD1 as a benchmark I had no idea she was 'off'! She is very, very clever and able but has zero social skills which kills me. She is funny, friendly, lively, imaginative and loving but only really has one school friend sad The consultant said it's likely that the other children just don't 'get her' which makes me feel sad for her, but happy that we now know and can manage things. Plus the lovely consultant said we should take heart in her future being full of amazing possibilities. smile
I just wanted to ask if other people have any advice really! DD1 can't keep a thought in her head, her room's a squalid dump but unless I stood there saying "Pick that up. Now that... Now that" for hours, she just won't/can't do it. She also has a lot of trouble with school work as she has very poor handwriting/spelling and poor working memory. Anybody have any opinion on Equasym? It has not started working yet (up to 40mg).

And nice stories of AS girls who go on to be happy and well adjusted adults would be lovely smile

JoinTheDots Thu 31-Oct-13 13:24:58

Have you ever been over to the special needs children boards? They are full of brilliantly supportive and knowledgable parents who have been where you are now and I am sure would love to share their experiences. Well worth moving your thread if you can!

HouseAtreides Thu 31-Oct-13 13:36:50

I wasn't sure where to post as I followed AS searches to here. I will have another look! smile

dyslexicdespot Thu 31-Oct-13 13:49:10

You wil have to change your settings if you want to be able to 'see' and post on the special needs thread. Go to 'customise'at the top of this page and follow the instructions at the bottom of that page. Good luck!

HouseAtreides Thu 31-Oct-13 13:58:35

How do I ask for a thread to be moved? Long time reader, not much of a poster, even rarer thread starter.

TwoLeftSocks Thu 31-Oct-13 14:04:01

You can Report your own thread and ask MNHQ if they'll move it across for you.

dyslexicdespot Thu 31-Oct-13 14:09:11

I reported it for you.

HouseAtreides Thu 31-Oct-13 14:20:51

Oh thank you. smile

mother0Finvention Thu 31-Oct-13 14:23:41

Knowledge is power, your local CAMHS should be able to point you in the right direction for parenting groups and support groups for both ADHD and ASD. I found these invaluable when my son was diagnosed with ADHD.
Also read Daredevils and Day Dreamers it will help you get a more positive out look on your child's condition. The more you know about it the less frustrated you will become.
Frankly it sounds like the state of your daughters bedroom is the least of your worries, relax! The best of kids can find an excuse for not tidying their room, but this isn't what's happening here your child is highly distracted. If you want to get on top of it with her you will probably have to stand over her to keep her on task, but make it part of a routine and slowly but surely things will improve.
As for the Equasym, 40g is a very low dose so it's not surprising that there don't appear to have been any positive effects just yet. Trust me they do come. My own child is on 200gm, but it took quite a time to get the dose right and it has to be monitored. The biggest thing to be aware of is the affect on your child's appetite and growth that this medication can have.

HouseAtreides Thu 31-Oct-13 14:27:34

Oh yes the room is the least of it, it just makes me grind my teeth... "I haven't got any clean pants Mum" "They're all used and on your floor!" We are going up to 60 mg over the next three weeks, so far there has been no physical effect (psychosomatic on the first day of 10mg- she went and tidied her desk!)

mother0Finvention Thu 31-Oct-13 14:39:07

Yes the ground hog day nature of distractable behaviour is infuriating, but I'm of the attitude now that mess is the sign of a creative spirit and unless it's likely to create an infestation of some sort it can wait. Neither of my kids have allergies and I'm sure it's because of the healthy amount of mess they have been exposed to! Seriously routine is the key to cracking this, and the pills really do work, once you have the correct dose.

TelephoneTree Thu 31-Oct-13 23:01:03

I think it might be worth you looking up gluten intolerance and ADHD, autism & aspergers…..

PolterGoose Fri 01-Nov-13 08:24:07

Hello House flowers

I have a 10yo ds with Aspergers (plus Sensory Processing Disorder and hypermobility) who was dx at 6. There are quite a few parents of dd's with Aspergers on the SN boards so hopefully they'll be of help. There are lots of parents of kids with ADHD but not many girls I don't think, is ADHD rarer in girls that ASDs?

Are your girls being properly supported at school and have you considered applying for statutory assessment for statements? Have you applied for DLA? Are you getting the professional intervention the girls need? I've found OT to be absolutely invaluable. Any particular difficulties or challenges anyone on here can help with?

HouseAtreides Fri 01-Nov-13 15:37:17

This is all new to me as DD1 has just started secondary school at the same time as getting used to a diagnosis and trialling medication. I don't know where to start re a statement. I don't think we would come under any criteria for DLA at all. I am not worried about DD2 as much- it's primarily DD1 I don't know what to do with or how. I've requested a meeting with the school senco but haven't heard back yet. I really need to make her condition known to all her teachers (she has already had singling out by one teacher who has, thankfully, just gone on maternity leave.)

magso Fri 01-Nov-13 19:25:48

I found it took a while for ds (almost14 with MLD ASD and ADHD but tried medication first at 5) to learn to use the extra thinking space that medication can bring. It can be rather disconcerting at first for the child, especially for those that struggle with change. It may also take a while to find the most suitable medication type.
I have heard that because girls tend to have the quietly inattentive rather than the hard to miss impulsive hyperactive type of ADHD - they are very often missed.
Ds is hopeless at tidying up too. I mean seriously hopeless. I set up a colour coded system of trays with pictures of the toys they should contain on the front. It was a complete waste of time. He just does not get organisation at all! I now resort to bins and sweep it all up. He will tip it all out whether it is organised tidily or not!
Ds was 9 before I applied for DLA for him ( he is at a special school and they told me to apply as I was struggling to buy some of the sensory equipment for him, and they found him one of the most challenging children to keep safe and supported). Your children may be entitled it just depends how much more support your girls need than other girls the same age. There are several rates for care (high medium and low), and a mobility element - low for those that need help when out and about (above and beyond their peers) and high for those that cannot walk unaided. I have simplified. So it might be worth asking. Its all due to change soon with loss of the lowest rates.

Mollyweasley Tue 05-Nov-13 16:05:40

I was diagnosed with both AS and ADD this year after my son was diagnosed with AS. Until then I had never heard of Aspergers syndrome.My diagnoses gave an explanation to a lot of my differences and difficulties over the years. I have a lovely husband, 3 children and a degree. I suffer from anxiety and have done all my life but it is manageable and I am generally very happysmile. Your girls are very lucky to have such a supportive mum and that their difference has been identified at such a young age. This will certainly contribute greatly to their future happiness. Oh and also: my mum always moaned about my bedroom growing up (it was a tip!, ADD seem prevalent in this area) but I must say that my house, if lived in is clean! wink

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