Just when you start to question yourself…. BANG!!!!

I think I should stop saying I have had an interesting day, because nearly every single day with dinky, is in fact, an interesting day!

Sometimes, I go through periods where I think that because dinky hasn’t got a diagnosis, it means that she doesn’t have PDA, I question my beliefs and I wonder if she is just a pain in the bum… and then… along come days like today!

This morning she actually got ready in time! Although I wasn’t celebrating too much as we did start at 5.30am, which gave her 3 hours….

The walk to school was actually good. I asked dinky about nurture and she said it was better than staying in the class. when I asked her why she said because doing letters and writing numbers is boring and I hate it. So I left it a minute, and asked what she likes about the classroom. She said she likes free time and she likes reading, ‘reading is fun! Sometimes.’

In school we go to do the activity, which is again, school trip related. I kept trying to tell this one TA that Dinky didn’t go on the trip, but she kept saying ‘it can be anyone from that day’. Grrr.

I managed to get dinky to write a letter to the train people thanking them for getting Simba back. I swear her writing is just getting worse. I really want to jump in at home and get her to do some writing to keep her levels up, but I don’t want it to be a case that she gets no help because she is doing well academically.

Once Dinky had finished her writing she went off to play on the computer. I spoke to beginning of the week teacher who said,

“do you think she is settled now? I think she is doing ok. We have started using other techniques like, telling her what we are doing and then leaving her to make the right choice instead of pushing her. Asking in a round about way.”

Oh my giddy aunt!

So they ARE capable of following direction! WOW! Knowing the school though, it is only beginning of the week teacher that does this. It has to help matters in regards to diagnosis, that the school report, that the PDA techniques work better than traditional ones, right?

At the very least it would be handy if we could have a TAC before the paed appointment and then make sure PDA techniques are on the TAC notes and take those into the paed.

Hopefully it will show that it is NOT me just being a neurotic internet researcher mum.

I came home, watched a bit of JK, then had a look on the iPad. I saw a message left on the blog… I replied, then saw that there is a new blog post from the person that left the reply. So I read it, as it is like a small glimpse into the future. Unlike mine, her blog is always insightful, there is actual research done, and articles that are relevant to other people. In short her blog is fantastic…(if you want to have a look for yourself go to blogs I follow.. it is pathological demand avoidance an autism spectrum disorder)

It seems dinky is just like her daughter was at 5, and it scares the daylights out of me. I have read what happened between 5 and 9 and seriously, I don’t know if I am ready! I have one slight advantage. I know about PDA, and am doing my best to put the strategies in place.

Then I get a call from school.

Dinky has hurt her arm and hasn’t moved it for over an hour.

Now this is taken from my blog entry on the 2nd of February 2013

Hmm, well. Friday was a very bad day for dinky.
First of all she had a fight with her friend. Well her on/off friend according to the TA. The teacher just stood there. The student had to protect the other kid and I had to muscle my way past parents and kids piling into the tiny area that the fight was taking place. I grabbed hold of dinky and literally dragged her out of the classroom. She kept trying to get back in ago I had to hold her. She punched me and shoved me in front of the teacher who had come out. She ran off looking for the deputy. The welfare officer came in and tried to help. Then the deputy came. They told me to go. It is so hard to go when your kid is distressed, but I left.
I did some bits in town and then headed home. At 12.30 I got a call. I looked at my phone and it was the school. Filled with trepidation I answered. It was the deputy. She said that dinky had fallen over and another kid had picked her up and dinky said she hurt her arm. Apparently dinky hadn’t used her arm for 2 hours and the deputy wanted to see what I wanted to do. There was no swelling or bruising and she didn’t seem distressed at all. I said I’d pick her up and get it checked and would be there as soon as I could but it might take a while coming from the other side of town.
Well on my way to the school my phone rang again. I picked up, it was the deputy again. Dinky had made a miraculous recovery! She was fine. So I did some window shopping and picked her up at normal time….

the post continues to an abysmal effort of getting her out of the school.

She had also done something similar where she said someone had hurt her (accidentally), and I got the bus stop before she miraculously jumped up and said she was fine, the little so and so.

So I was sceptical, but erring on the side of caution, I went to the school to pick her up.

When we got to the bus stop she was being difficult. She wanted food, and I said she couldn’t as she had to go to hospital to get her arm seen to. So she hits and kicks and cries because she is hungry and she wants to go on a big bus, and then she ran off, so I had to chase her as I didn’t put the wrist reins on her only good arm.

We got on the bus and every bump she yelped. I really changed my mind then. We got off the bus into the UTC at the hospital and sat in the paediatric waiting room. We got there at 1.30pm. Dinky read to me and I read to her. She played with her arm dead straight by her side not moving it at all.

when we went to see the triage nurse she was avoiding all contact until a sticker and bubbles were offered. Then she answered the questions and actually spoke to the other nurse in the room when he asked questions.

We waited again, then were sent to X-ray. Where again we waited, but dinky had bubbles so she was happy. Not once had I seen her move her arm. Every time someone tried to move it she refused to let them, said she couldn’t and screamed at them. Which is why I think they brought out the bubbles to catch her out.

X ray was interesting as he wanted her arm in a position she didn’t want it put in. 1 guess who won that particular battle! Then the radiographer said she could have some chocolate once she was done. Grrr, I wish they didn’t say things like that. Once we left Xray (after dinky had a look at the pictures of her bones, had a play with the x ray machine, and messed about a little) all she went on about was the chocolate the man said she could have!

Again we waited….

Nothing broken, and the doc said it was more than likely to be ‘pulled elbow’? The doc asked dinky to sit on my lap so they could pull her arm.

In what can only be described as typical PDA fashion, she hid behind a section of wall and refused to come out. She tried to get what she wanted by saying she would only come out if she could take the bubbles home, and if no one pulled her arm.

I let them keep making demands and failing. Then I told her that we would be stuck in the room for a long time if we didn’t do this, and I promised we could get dinner out because she was such a brave girl. I asked if she wanted a cuddle.

So she came for a cuddle. The ambulance technician on placement, blew lots of bubbles and the doc grabbed her arm pulled and twisted. Dinky screamed! I held her tightly.

The doc said it sounded like it was back to where it should be and she should be able to move it now. Problem was, dinky was so unimpressed at the doc, she refused to show she could now move it. So we spent another 10 minutes trying to get her to show she can move her arm.

Turns out it is all fine now. which is a relief!

We left at 4.15pm.

I took dinky out to eat, and she picked a small toy for her bravery, and I got her chocolate.. (yes, thank you Mr. Radiographer…NOT!)

We got home, dinky watched some TV, got ready for bed and by the sounds of it, is asleep!

Relieved, shattered, and it is the end of another day… hopefully, that is it for the drama today!

Tomorrow is another day… Swimming… fun…

Special needs group

Dinky has been quite lucky I guess.

She has no diagnosis, and only got awarded disability living allowance a few weeks ago.

A few months ago, I went to a housing conference and met the guy who runs the special needs group, he passed on my details. I felt like such a fraud. The lady who runs the group said not to worry, after seeing her for a few hours (Dinky went to a party at the house where they run the group from)she definitely has additional needs and we finalised the paperwork. Yet again Autism spectrum disorder came up.

Easter Dinky went on 2 trips, the farm and the cinema.

Then, she was given 3 Saturdays over 3 months, well 2 in May and one in July.

Library, Cinema, Cinema.

So when she got her letter to pick something for the May half term, I was thinking anything but the cinema. Today I got her letter. She has…..   The cinema, despite it being our last choice. Dinky loves the train and they had a day trip to bluebell railway which she would have loved! But she got the cinema… again.

I wouldn’t mind but I don’t think it is her favourite thing. She wouldn’t get ready this morning, her feet were bored on the way to the bus stop, and she was holding on to me quite tightly. I don’t know why she keeps getting the cinema.

Now I know that sounds very whiny. However, they now know dinky gets middle rate care on DLA which entitles her to be in the group. I cant work out why her preferences are being ignored.

Today she saw Wreck it Ralf. Now she is alternating between spinning, going under the table and is on the edge of meltdown. This is not good, I hope this doesn’t spill over until the morning, it is the Zoo trip tomorrow. (I knew I was barmy booking it!)

(I have to admit this morning when dinky was doing her ‘I cant get dressed’ routine and the ‘you moved my toy without my permission’ flip out. I thought about feigning illness and staying home alone, letting my dad and dinky go together…. Nah, I couldn’t do it really. How can I ask a 5 year old to look after a nearly 50 year old, she might lose him!)

I was a little concerned about Dinky. I couldn’t work out if it was her just being in a very PDA mindset or what but she refused to come home with me for a bit, this is the conversation… (after countless attempts to get her to come with me)

Dinky: you are NOT my mummy, you are a ALIEN!

Me: I am your mummy, look at me, I look like me, I sound like me, and I love to the edge of existence and back again.

Dinky: You have a costume. I realised you were a Alien.

Me: Well, that is unfortunate

Dinky: why

Me: Aliens cant get into London Zoo. I guess if I AM an alien, we cant go.

She headbutt me a few times lightly, then she went quiet for a while and muttered to herself, until she decided it was indeed safe to come home with me after all.

I guess I will just have to see how she goes. As long as my dad doesn’t wind her up.

Today is PDA ( pathological demand avoidance ) awareness day…

Today is PDA awareness day.

I fought with myself a lot over how much to reveal on my personal facebook page.

One of the hardest things was, what others were going to think. Then it hit me. Should I care what other people think of me and what I post on my facebook page? No, no I shouldn’t. Dinky has been referred to the child development centre for suspected PDA.

PDA needs to be recognised more widely and therefore it needed to be done.

I really hope that more people will look at PDA and more places will start to diagnose it as a condition in its own right. This will make a big difference to these children, as the handling guidelines are different.

If you are reading this and you don’t know about PDA

1. Thanks for reading

2. Please pop along to www.thepdaresource.com

3. Please spread the word!

Things have been crazy

Like the title says things have been a bit crazy round here.

I’ve been meaning to blog but my head is all over the place at the moment.
Mostly things centre round Dinky. Her school have been a bit useless from the second week and still are. I had to talk to the deputy to get her a bloody coat peg. The school said she was welcome on the school trip only if I went as her 1:1. When I went to discuss it, turns out she wasn’t doing as well as the teachers made out. If I didn’t go there were only a few options.
1. They get a senior member of staff trained in restraint to go, but they would need a second member to go too so she would have 2:1 on her. She is 5 for crying out loud! A small (hence the name dinky) 5 year old, 2:1 they can’t be serious! Apparently that is expensive though…
2. I have her at home. No bloody way! They don’t want her on the school trip so she gets to stay at home when she is supposed to be getting an education? No way!
3. She goes into the nurture room for the day.
Ok those are my options.
Well, I am not in the right place for socialising with teachers and parents and having lots of little kids talking to me. It is taking everything I have to be cheery and fine for Kaitlyn’s sake when she is home. Plus I have never been to this place, so it’s a no.
Option 1, the deputy wasn’t keen on and it was a lot of “well, we will have to see if we can finance it and get the staff.”
Option 2. No way.
Option 3, well to be honest from what beginning of the week teacher said once, the nurture room might be a part of her schooling at some point if she is unable to cope. Maybe it would be worth her getting used to the nurture room and the staff.
Then there was a meeting with the senco.
That was fun. If fun means fighting tooth and nail for what should be a given.
She started off all defensive, “we are getting to know her”, “some children present differently in different settings”, “it is hard for the teachers to talk to 30 children’s parents or carers at the end of the school day.” And “we try to remain positive about our students”.
So I explained that it is hard not to be anxious after your 5 year old only lasts 6 months in one school, to move to another and be misled into believing that your child is doing really well, but knowing in the deepest part of yourself that it just isn’t true. I second guessed myself. Only to find through speaking to the deputy and having a small chat with beginning of the week teacher that actually she really isn’t doing as well. It doesn’t help that the TA is one of those people who think they are better than everyone else, but is actually no better.
She doesn’t get Dinky and she won’t even try. 5 years as a TA and she thinks she knows everything. She moved dinky down a reading level because dinky wouldn’t read to her. So she went from stage 2, to 1+ and is now on stage 4 in only 4 weeks.
So with all that in the background, it is hard to think about doing what I need for me and for our future. I finally got a new mental health nurse, but she is less than useless.
She said he only thing she could do was send me to some group.
The group leader phoned and gave me 15 minutes to make a 45 minute journey.
On a brighter note.
I took Dinky to the London eye, and the sealife centre/ London aquarium.
We had a really good day.
The last time I took dinky for a day trip to London (apart from her grandma’s) was the science museum back in August. That was a nightmare. She ran off, hid, refused to move, messed about a lot, final straw was hitting me because we had to wait for the space tour. We ended up waiting outside for the people we went with to finish up.
This time we had her DLA form and pre booked priority disabled tickets. Which meant no time restrictions, no lines, no crowds, less noise and more freedom. It meant I could do things at her pace. I let her choose what order we did things, when we did them, what we had for lunch and how long we spent in places. She was allowed one small thing from each place as a souvenir.
They say challenging children need more boundaries. I gave Dinky less and watched her have the best day out we have ever, ever had.
Even when she was 2 and we went to the sealife centre in Brighton she was a nightmare.
I don’t know if I’m just pure crazy or if the less boundaries thing works better because she definitely has PDA, but we are going to the ‘special children’s day’ at London zoo this weekend with my dad. I will probably have to make him aware of my plan and how I want to handle her, and how he will handle her or he can just go/stay home.
I think now I have a very good idea what is going on with dinky it is easier to manage.
Like, I know she may find it difficult going to the zoo, so it will be on her terms. She can decide when we go, how long we stay and which areas of the zoo we visit. I am still in charge of safety, but she is in charge of everything else.
Lets see what tomorrow brings