You can’t miss out an autism spectrum disorder from an autism event for that reason! 

  
 
Wow. Muppet teaching isn’t something I’ve engaged in for a few months, I was worried I might be rusty- although apparently I’m not! 

(I think the social communication team have Just removed me from the Christmas card list!)

Let me explain- 

A few months back I saw a flyer for an event in October ‘autism in girls’ £30 a ticket, keynote speakers, and group sessions regarding autism in girls! 

Yes I thought, autism in girls is different to boys so it will be good to go! 

Got the programme and the list of available sessions via email today.

My face dropped.

Three keynote speakers, only one *may* be of interest 40 minutes from the Lorna wing centre. 

The sessions were 3/4 teen based, sleep issues (which I’ve had long discussions with the consultants and specialist health visitor about and the consensus is lack of adequate melatonin production for onset of sleep), eating disorders, a personal view from a young woman with ASC giving advice on school and home strategies (which we know probably are not PDA ones) and a mums story about supporting her daughter through school and uni.

None of these are going to be relevant to me.

So I sent an email- 

Basically saying that I was disappointed that there wasn’t much relevant to my child who is 7 and that PDA didn’t seem to feature at all in any of the sessions as I doubt that the Lorna wing representative will touch on it. 

It therefore isn’t a whole picture of autism in girls if you miss out PDA, as that is a condition on the autism spectrum that some girls experience! Some medical experts even suggest that PDA is a female presentation of AUTISM! 

I got a reply. I think she *may* have been a tad upset that not every parent was thrilled by the line up! 

To be fair she only made me more angry with her reply.

Not only are they not mentioning PDA, they are not mentioning it for the most moronic reason- 

I appreciate that there will not be a focus on PDA. This is the first event that focuses on girls and therefore the sessions are more mainstream for this event and this was we had been being asked for by the parents and professionals we work with

Putting aside her awful grammar, WHAT THE ACTUAL?!?

‘More mainstream’ 

So I had no option but to burn this rickety bridge and hope that they learn something! 

I explained that this was poor reasoning for leaving PDA out! Other parents with girls with PDA were attending, not just me, so it isn’t fair their children are not represented! Surely mainstream is the right place, it could have given a parent their lightbulb moment and led them to realise why their child is considered ‘complex’ or ‘a-typical’, why their children have an ASD diagnosis but do not seem to respond to the strategies! 

This event is not inclusive to all parents of girls on the spectrum and possibly a more apt name would have been ‘Autism in teen girls’ as there is very little for parents of younger children.

It is very disappointing to find this out after paying out for this event, as sadly all it will be for me is a rather expensive lunch.

Even more disappointing is the fact you needed this to be pointed out to you!

The reply was- thank you for your feedback!
What planet are these muppets on?!?

When the rules don’t seem to apply

This is a very ASD/PDA thing. 

For the last 4 weeks Dinky’s class have been working on road safety.

(Personally I think this is brave! I wouldn’t attempt this with Dinky’s class unless we did it in a playground with fake roads drawn on! That or all be wearing bubble wrap and fat suits!) 

I was told by Dinky’s teacher that they all got a certificate, (which is now on our wall at home).

She could tell I was sceptical of Dinky’s new found road awareness! She then said the words I was waiting to hear “Dinky does know her road safety, she can tell me the rules, but she can’t apply those rules to herself in practice”

It is one of those times where you really want to say “yeah, tell me about it! Danger awareness Zero and thinks she is invincible!”

But I just agree. 

It can be quite interesting when the rules don’t seem to apply to your child, despite you trying so hard to reason with them and explain that they are actually part of EVERYBODY and they are not excluded from the law either!

Of course most 7 year olds do not understand what law is, and neither does dinky! While of course there is a major amusing side to this, there is also the not so funny.

Obviously it endangers her life, not being able to implement road safety is a major concern, I’m not always as fast as she is, and if I don’t catch her when she runs- well, to date we have only had near misses and I grab her at the first sign of running or when we go near a road. 

It can really mess with friendships too, dinky is great at telling everyone else how to behave, she completely parrots the exact wording I tell her when she is doing the same thing, but she doesn’t see how this also applies to herself- she has been known to tell kids not to run up the slide not 10 seconds before doing it herself! Of course this leads to other kids thinking she is just being bossy and mean. Nope, she really just doesn’t get it. 

It can be really frustrating as at times you feel that telling the wall might have been a better option than tell your child who tells you they know (in a trademark stroppy child way) when you try every conceivable way of explaining things! 

I just go with the flow now, I’m getting used to people who don’t get dinky whispering that I ‘obviously can’t be bothered to teach my child how to behave nicely’ – when in reality I’ve tried bloody hard but she just doesn’t get it, I have more chance of teaching her quantum physics! 

It isn’t even defiance or lack of boundaries or anything like that, it would be easier if It was! It would be easier if I was a shit parent because then I could go on parenting courses and be better and problem solved! 

It is purely not understanding, hopefully as she gets bigger this will change. Hopefully, with any luck, fingers crossed. 
(Oooooooh also Dinky’s teacher has requested to go to the next national autistic society PDA conference this year! Really love this school!)

Doing well, but had to pick her up from school today

so 8 hours ago I wrote how well Kaitlyn was doing at school.

Apparently despite the horse riding grade completion and the start of the week last week, dinky has been very avoidant the last few days at school, leading up to her not being calm this afternoon.

So I had to pick Dinky up from school because she wasn’t calm enough to go in her taxi and they left at 4pm, which is when I got the call to go get her. 

Interestingly the teacher was (like with everything else) the complete opposite of her mainstream counterparts that we encountered. 

“It’s not that she didn’t want to come home but we had a different activity this afternoon and she didn’t transition well”

“I want to do an ABC on Dinky because the last week or so she has been more avoidant, so it might be that something we do has stopped working as it has come to its end and we have to find something new” 

“We are good at trying new strategies here and coming up with ideas, it’s what we do”

She asked me if I was ok because I hadn’t replied to anything she said! 

“Er yeah, just you seem to have it covered” 

“We try, we just want you to know and convey to Kaitlyn that she did well by not escalating to crisis and we are proud of her and will see her tomorrow”

“Ok”

Sorry but this is gold standard PDA awareness right here!

They came out to the car and cheated to Dinky so they knew she wasn’t in trouble and they still wanted her to come back.

Dinky keeps saying she doesn’t want to leave this school- I don’t think I want her to either! 

Doing well

It seems dinky is doing well at school. It has taken a long time to get here, but I was so proud of Dinky who has achieved level 1 in her riding for the disabled horsriding this week! 

They have her a certificate and a badge. Some kids with PDA won’t like these things, but Dinky loves praise IF (AND ONLY IF – can’t stress this enough!) it is earned by something she has worked hard at herself and NOT because she complied but because she wanted to do it for herself! 

She loves the horse she rides every week and she loves horse riding, it has taken a while for the staff at RDA to understand her particular needs, but now they understand more they are getting more from her and Dinky wants to be good at horse riding, she wants to hold the reins properly and give the right commands. How better to feel in control than have command over such a big and beautiful creature such as a horse! 

It is amazing- dinky even got star of the week two weeks in a row! 

Dinky struggles with number work she smashed her education target of counting in twos by counting to 60 in twos! 

The other, Dinky, like a lot of autistic children is sensitive to noise and also doesn’t like croweded areas. She goes to a catholic school, up until now she has really struggled with mass and other RE lessons because they use bells and sing. 

Well- dinky not only managed a whole session but used the bells herself! Earning her the second star of the week because she had tried her best to stay and take part.

Most parents of kids in year 3 would look down their nose at such nonsense reasons for star of the week- well in my humble opinion they can fuck off! 

If I look back Dinky got star of the week probably 3 times in the whole time she was in mainstream, once because all kids in the class got it at some point in the term and that week she hadn’t had a massive meltdown. 

I am definitely more proud of the ones she gets now because they mean something to her which means they make me happy to see her proud of herself! 

Again cementing my firm belief that when it comes to children with SEN- mental health and the child’s wellbeing definitely come before academic achievement!