When the weird and the wonderful become part of everyday life

I know most kids do strange things every now and again, but when it becomes the norm, it can be a bit hard to take.

There are moments along the diagnostic journey when, it becomes difficult to see how people can not see what you see. I have been having rather a lot of these moments lately. Mostly sensory stuff like:

Chewing rubbery things and toys
Sucking Simba’s (soft toy) tail
Licking metal objects (mostly door handles)
Putting tissue in her mouth
Putting seashells in her mouth
Spinning
Sensitivity to noise (and therefore wears ear defenders sometimes when out)
Wearing ear defenders while the vent for the Hoover blows in her face and she watches the bits go round and round
Slamming her body against the back of the sofa

I’m sure there are many more. When the family link worker came out on Thursday, her idea was to do a visual aid for Dinky in the form of two choices. The list to make Velcro backed pictures for is as follows

Lining up Coins
Playdoh
Ear defenders-Hoover
Remote control car
Film
Spinning

This really isn’t the type of thing a parent makes for a typical child the fact that Dinky would rather do one of those things than, say, go out on her bike, shows she is not a typical child.
Her paediatrician appointment is now a week away, and I am determined to get the paediatrician to see that Dinky is on the spectrum and fits PDA. I am not the only one who says it, 4 professionals at the TAC said they thought she was on the spectrum, I need confirmation so I can get other support services in place for her.

I am ready to do battle… Getting my PDA war paint on!

Today Dinky went to soft play, the centre was closed and it was special needs kids by invitation only. Which was lovely, as it was quiet and there are no judgey parents wondering why your child happens to be sucking the mesh, or sitting and watching the lights in the disco room, or racing round in the little tykes cars refusing to share, or bouncing round like Tigger on speed!

Coming home was an absolute nightmare. She was arguing with a lad who may also have PDA, then they sat and played nicely (but very loudly) on the bus. She kept saying “it is the middle of the night”, over and over.
She found it hard coming back in the dark. But she did ok letting me get her ready for bed.

Now she is sound asleep… Thank you Melatonin!

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School, and the weekend

For those who do not follow Dinky and me on facebook… we have had a small win where the school are concerned!

On Friday I got a support timetable in her contact book. She is to have 1 hour of 1:1 every day in the morning, and then the first 20 minutes of literacy and Maths she will be in small groups. This is WHILE they wait for someone to answer their advertisement for a part time TA for her!

It is such a big step forward!

I have since figured out that in order to get her a statement and therefore out of the school, they have to have given her up to 20 hours of support a week and prove that it isn’t working. The reasons matter a little, but not so much as the fact that she WILL now get the support she needs!

I have sent off my parental statutory assessment request! So in 6 weeks I shall find out if they will assess. If not I will fight. I will always fight! Dinky needs me to do this for her. I guess the contact book is going to be really good evidence as it shows she refuses to join in group activities and refuses to work. She has only completed one writing session in a week. It also might help with the paediatrician on the 7th.

 

Dinky has been al over the place after school all week. I haven’t seen her this bad, anxiety wise, for a long time. It is really difficult because she is just screaming, crying and lashing out over the smallest of things.

 

This weekend has seen Dinky find an od game that I forgot she had. It is an Xbox Kinect game called Elmo- Once upon a monster. Dinky acts as the control and becomes Elmo in the ‘book’. She gets to act out all the bits and it is great. She even had my dad up dancing with her yesterday! (Which was highly amusing, and I have pictures!)

She still found any demands difficult, and even found the more direct demands on the game hard to follow and decided to do her own thing, which was fine. I’m glad she has found something that can entertain her and keep her focused. It is much better than her jumping off the sofa and breaking things (she has broken a number of her toy story toys lately through heavy handed crashing games).

Dinky has calmed more today, it is so hard because I know it wont last. School tomorrow.. and I know it will be back to the same as last week.

Thank goodness for tipex!

Sounds odd I know. However when you have no alternative but to send your child to a school run by muppets, tipex is never too far away (but far enough so that the child doesn’t paint the base of your chair… Again… Lesson learned!).

Dinky now has a contact book, and while I am happy to receive information from the school about her day I find myself looking at both sad and smiley faces, as if that gives me a true indication of my daughter’s time away from me and in the hands of the supposedly educated muppets.
I notice 2 bits of paper placed inside, so I take them out. One is the behaviour questionnaire I asked them to fill out over a week ago! and the other is the whole year plan. And there is actual writing, I peak in interest, until I see it is from the head teacher, and I realise that my stress levels can’t take that as dinky was almost literally bouncing round the living room having finished her spinning. So I look at the behaviour questionnaire.
Well, according to whomever filled it out, it is only somewhat true that she resists demands, her role playing the whole day as Shira is ‘appropriate to age’, and other than that nothing out of the ordinary for a typical child who participates well in school, is popular and has no issues whatsoever. Stress levels rising, Dinky is now asking if she can get a job instead of going to school, I get her dinner ready.
Once she is eating, I sit and read the bit from the head teacher.
She writes that she believed that Dinky wouldn’t go to assembly as it was thought it was too stressful for her, and Fridays assembly is ok because it focuses on celebration and head teachers cups.
The educational psychologist is coming out on the 5th November and Dinky will be discussed.
The behaviour questionnaire was completed
Dinky will now receive 1:1 in phonics
The teacher has asked the other children not to tease Dinky about her reins.
Hope this is helpful.

My reply 1:
No this is not helpful! We must have been at different TAC meetings, the idea is to reduce her anxiety and try to do what is in Dinky’s best interests, if she is upset, is it not worth taking her in there and then IF she can’t cope, take her out? Too logical?
Thanks for the behaviour questionnaire, I guess I will stop the statutory assessment request as Dinky has somehow miraculously changed her behaviour so much since the TAC it is no longer necessary! Guess she will be staying after all!
Why is she on the list for educational psychologist if she is doing so well? She obviously has caught up in social skills, stopped having meltdowns in school, stopped being controlling (or in your own words dominating), and has stopped all the other things that you were not happy with, so now it doesn’t happen and it is all in my head? Or is that because it turns out I haven’t neglected her and actually have shown her the love and attention she needs?
Yes I’m ever so grateful….

Tipex, more tipex and just in case!

My reply 2 (once the tipex dried)

Oh yes extremely helpful, your teacher lied, you can’t be trusted to make judgement calls and there is no way I can get her out of your school if you pretend everything is honky dory! Great! Thank you.

Tipex

My reply 3

Your school is a joke and you are a muppet

Tipex

So I left it tipexd and with them guessing what reply I left to the muppetry.

I screwed up the behaviour questionnaire and threw it across the room, dinky asked me why I had done it. Fair question, I would probably been furious if it was her. So I told her that her teacher has answered questions and it seems she loves school and is a very good girl. Dinky made me laugh as she said “I DO NOT like school and I do be naughty sometimes”. Well, at least my 5 year old can tell the truth!

Dinky was still really on edge and when I said “right, I need to get your swim stuff” she was worse, and then began saying she couldn’t get heads shoes on, and walked past them saying she couldn’t find them. When I pointed out where they were she was furiou, took herself upstairs and began trashing her room. So she didn’t go to swimming yesterday. I think it is just all too much for her at the moment. So I finished my second draft of the statutory assessment request which took me 3 hours (I was kind of watching Manchester United vs Liverpool too, and deleting bits which seemed like an attack on the school and not a fight for Dinky’s needs to be met)

This morning dinky was under the washing. Although she did get dressed by the visual timer so not bad!
Although she did say that she has done enough school and that she will be an adult soon and do work instead!

Ear defenders were out again this morning, I think the guy who walks his dog at the same time we get to the road is becoming accustomed to the little girl in the bright pink coat, with the pink wrist reins and now the bright pink ear defenders!

We shall see how things go…

So frustrating!

A few things yesterday got me pretty annoyed.

First, Dinky’s brand new PE kit goes missing. So I take her to the office after school, and because I haven’t brought her new scooter with me she has a meltdown in the office, not violent, but crying/screaming and unable to calm down. When we get home, I was surprised to see a contact book. I was even more surprised to see it was like a timetable with the following statements
– would not participate (reading)
– participated well, some good ideas (9.15-10)
-upset that she couldn’t attend assembly as she wanted to sing
– would not participate (maths)

I think her school have taken extra doses of muppet pills in the mornings! The agreement was that they weren’t going to force her into assembly if she didn’t want to go… Not a blanket ban on her attending assemblies. They just do not get that the whole idea is to support Dinky, and lessen her anxiety. The other bits are good evidence for a statement, which I drafted last night while Dinky was in bed.

The school still haven’t given me the rest of the paperwork that they were supposed to give.

Then Dinky wanted to phone her nan (fathers side). Which was fine, but then when she spoke to me she seemed unhappy with the whole PDA/ASD thing. She said she wants to see reports and be involved in meeting to give her view as a grandparent. Which is all well and good, except, she doesn’t KNOW dinky. Sure she has had her over night a few times when she was 2-3years old, once every 2-3 months, she has never attended a birthday, she missed the first 18 months and missed the last 2 years (bar 3-4 sporadic meet ups). Then there is the fact that Dinky mostly behaved for her, and then was more difficult at home for the next few days. She has nothing to add, and I’m annoyed she thinks that she knows enough to add anything.
I’m not saying it was all her own doing, she didn’t think she could see dinky as a baby, then in the last 2 years her marriage broke down. However she has no idea about the day to day living with Dinky. It’s all well and good being fun nan, coming in and out when you can, but it doesn’t give a true reflection on the child’s (in this case Dinky’s) strengths and difficulties.

She hasn’t known dinky really, since dinky started school. she has seen her a total of twice in the last year.
When she asked about school it was obvious she had no clue what so ever about how the system works. When I mentioned the special school, she was asking if it was a good idea to put her in ‘with all those other autistics’.
I was starting to get the impression she didn’t believe Dinky had any difficulties not related to the homelessness.

I can’t wait to get a diagnosis for Dinky, maybe then people will stop blaming me, or thinking they know her best. I’m sick of it!

This morning dinky didn’t want to go to school, she was shouting at me saying ‘why do you do this?’… What was so bad? I set the dressing timer and laid out her uniform. She was warned that I wouldn’t let her go on her scooter if she carried on, because I wouldn’t t able to trust her enough to stop when asked. She just couldn’t control herself. I had to say no, which led to more screaming and hitting.
Again on the way to school she had to have her ear defenders on.
She went in ok through the office.
I have spoken to the special school and have an appointment to go and view it at the end of October just before half term.

Things are moving in a direction… Time will tell if it is the right one. All I know is that Dinky can’t continue at this school.