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PDA? How to get diagnosis? Any advice please.

(16 Posts)
KalaLaka Mon 02-Oct-17 10:57:22

My DD (10) displays behaviours that fit perfectly with descriptions of PDA. She also suffers from high levels of anxiety.

Our GP was supportive of

KalaLaka Mon 02-Oct-17 11:04:01

(Sorry, pressed too soon...)

...referral to a paediatrician. After 6 months, we went to the appointment, but it was so disheartening. She has asked me to find a positive parenting course and then, if there is no change, to access camhs through school.

I have tried so many techniques and strategies already. I really need to find help for her! She is a twin, and her sister does not display these behaviours so I'm pretty sure it's not the parenting.

What should I do next? I'm trying to find a course, to tick that box, but we need to start doing something to help her.

Behaviour includes: meltdowns after school. Can't deal with change. Hits out and swears when there's a change or asked to do something she's not comfortable with. Unable to see when certain behaviour is inappropriate. Extreme worries (noises at night, worried baby sister will be snatched), nail biting. Wakes most nights. Can't bear family members being hurt, but reacts to accidents with anger and screaming.

Any help really, really appreciated!

CarrieDS Mon 02-Oct-17 11:38:22

My baby is 4 months old and my husband and I haven't had sex since her birth. I am breastfeeding and honestly, I really don't want to have sex yet...
This is my 3rd baby and I felt this way after my other babies were born also. I think after baby no1 we maybe had sex after 2 months. Baby number 2 I think maybe 3/4 months and so it appears to be getting later and later each time.
My husband has just started putting what I call, the pressure on. He keeps coming for 'cuddles' where he is clearly trying for something more. I have to be quite unaffectionate back or I feel I will end up leading him on only to have to pull away. I love cuddles!, but I just don't want sex yet. He hasn't complained, but I know it is an issue for him. I just feel really annoyed with him because to me the baby is still so small...
We have 3 children under 4.5; the baby needs feeding 3 times a night and often one of the other children get up once a night too. Often my day starts at 6am and husband works late so I do most bedtimes (3kids!) on my own. On top of all this I know breastfeeding ie. having a baby on you/touching you all the time, kills sex drive in many mums... defo for me it's like an intense physical aversion. Someone once told me it was a natural defence mechanism of the body to stop you getting pregnant again which feels true! Finally I also don't want to have sex until I have protection sorted as this is why I had baby no2 and 3 in the first place! I can't have a 4th so I want to go on the coil this time, but it's finding the time to get this done!...
Essentially I am just here to have a bit of a rant. I feel really stressed out because i know he wants to have sex and I love him and I know when I say no he accepts it... he's not a bad person... but I sense resentment and I just don't think it's fair on me. Babies are not babies for long and this stage won't last forever. I know it's important to prioritise a relationship, but as I say this isn't for long (relatively speaking) and I really need support (and is appreciation/ admiration/ gratitude too much to ask for!!) when I am putting 100% into raising OUR children and breastfeeding the baby, just as I did the other 2.
If it were up to me I would probably wait until baby is weaning and I am feeding less so around 6-7 month mark before having sex again.
I will talk to him tonight. How can I make him understand this from my perspective?

sunshine99789 Mon 02-Oct-17 11:41:50

Wow, I find this really interesting as it sounds so much like my dd!
She is also a twin (Identical) 8 years old and I have no issues at all with her sister.

The meltdowns after school is exactly the same with us, yet she is fine at totally baffles me how she can be so well behaved at school and so bad at home.

We started having 'issues' at school when she was 6 which lasted the whole school year but she has been fine since and school report no issues.

I too had to do a positive parenting course before camhs would consider seeing us...
and even after compelting the course and camhs assessing her...she got refused!
I fought and went back for another referral and she got accepted! We FINALLY have her ADOS next month after pushing and fighting for 2 years. its totally exhausting.

Im certain in my mind she has HFA/PDA but I suppose we will find out soon (hopefully!)

Its a long road and a tough one but keep pushing and fighting your corner. I was made to feel like it was my parenting but kept fighting back with "well how come her sister and younger sibling have no issues?"

sunshine99789 Mon 02-Oct-17 11:44:49

Also, Im not sure what area you are from but if you have a child under 5,acceas your local family/childrens centre, They may be able to help with courses xx

Polter Mon 02-Oct-17 12:23:50

Carrie you need to start your own thread in the appropriate section smile

Kala diagnosis or not, I'd suggest using PDA strategies anyway, look at:
The PDA Resource website
The PDA Society website
The Explosive Child book
Sulky, Rowdy, Rude book
The Incredible 5 Point Scale book
PDA isn't in any diagnostic manuals so a diagnosis is more likely to be something like ASD (PDA profile). I'd suggest doing lots of reading on autistic girls.

KalaLaka Mon 02-Oct-17 12:53:25

polter thank you! I have read some, i will definitely look the others up. Appreciated.

sunshine good idea.
So strangely comforting to see someone's going through the same too. How did you access the course? I'm struggling to find one. Have you found any strategies to help with meltdowns? Especially in public places.. find it so hard.

sunshine99789 Mon 02-Oct-17 13:00:27

At the time my youngest was under can self refer to your local family centre
May be worth googling your local one and giving them a ring to see if they can help?

Dd has always had an issue with tannoys, crowds and lots of noise....took us a while to actually pin point these so now when we are in those situations she wears ear defenders.

I find its mainly about knowing whats going to trigger her into a meltdown (easier said than done!)
At the moment she pretty much refuses to leave the house unless its for school.

It puts such a huge strain on us as a family as she consumes so much time, I love the very bones of her but sometimes.I just get so frustrated that we dont understand each other.

Out of interest...were your twins prem or were there any issues at birth?

Marshmallow09er Mon 02-Oct-17 13:06:19

I think these are the ‘positive parenting’ ones -

I have a feeling you might have to pay.

It’s rubbish the paediatrician recommended you attend one and didn’t even give you any details or refer you (mine kept telling me to do 1,2,3 Magic a long time - but it wasn’t even run in our county anymore). Sometimes you do have to be ‘referred’ into them as well - you could always get back in touch with the paediatrician and ask him / her to actually refer you into the course they think you should do.

I agree that the most useful stuff will be the books / resources that Polter recommended - it’s just sometimes you have to jump through the hoops to get onto the next level of support.

KalaLaka Mon 02-Oct-17 14:07:17

sunshine no, born at 38.5 weeks by cs, but she was much smaller than her sister. Looked prem, and jittery too, but generally fine.

Yes, it's all consuming here too. I do find time for the other 2 but it's wearing! DD often refuses to go out too. I have tried to make adjustments to make it easier, but sometimes just get in the car... she follows (screaming) and usually enjoys it when we get there. Such a shame it's all so hard for her (and us!!). No one I speak to gets it. I'm sure they think I'm exaggerating or that she's spoilt. Very tough.

Thank you marshmallow

sunshine99789 Mon 02-Oct-17 14:22:51

I know how you feel! Issues getting in the car....issues getting out the car.....issues with pretty much anything I ask her to do!

I find that making a statement works so much better than asking a question (bit even that is hit and miss) Such as...can you go and do your homework please? Is giving her the option to say no. Whereas ..please go and do your homework isnt giving her the option. Obviously thats not always possible and doesnt always work!

I find dd is worse the more comfortable she is, she will be more inclined to have a tantrum/meltdown with me rather than at school because (in her words) that kind of behaviour is not acceptable at school.

It breaks my heart because socially she wants to do things other kids do....go to with other kids..
.but it rarely ends well so we end up avoiding most things sad

KalaLaka Wed 04-Oct-17 11:50:14

My DD's friends are surprisingly accepting of her meltdowns and controlling ways. I've always been amazed and grateful. End of birthday parties and play dates are always hard... especially if her sister has a different thing in her party bag. End of the flipping world!

So so nice to hear from someone with similar day to day challenges.

Didiplanthis Fri 06-Oct-17 20:58:56

No advice as such but one if my identical twins is being assessed for ASD ( Tbh his twin has clear SPD issues but better coping strategies too ). We have discovered identical twins are 12-14 x more likely to have ASD than non twins ( fraternal are 6x more likely) . We are seeing issues arising more as he gets older but has many similar traits to those you describe. We were told we wouldn't even get referred on nhs so found the money for an initial private assessment which has shown very likely ASD - we are hoping this in combination with the raised incidence in twins will strengthen our case for further assessment on nhs.

Didiplanthis Fri 06-Oct-17 21:01:01

Oh and yes the different party bag thing.... I dread it !!! Mine WEIGHED his freddo today as was convinced his brothers was bigger.....

KalaLaka Fri 06-Oct-17 23:41:57

grin mine looks at the weight on packets of crisps to check she's getting a fair deal! Weighing a Freddo... I love it smile

Very interesting about the twin thing. I wonder why.

goingslightlycrazy Sat 07-Oct-17 07:31:34

My understanding is that because PDA comes under the umbrella of ASD, you need a diagnosis of ASD 1st iyswim.

So you’re diagnosis would be ASD with PDA traits (as with my DD)

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