Tomorrow is ‘find out about placement’ take 2

Again I find myself waiting at the end of the week to find out if Dinky is any nearer to getting a school place.
With the LEA having agreed to a placement at the (rather expensive) independent special school, we have a few more steps to go.
First is tomorrow.

Tomorrow I find out if the school will offer Dinky a placement and the cost of this. We know it will roughly be £81k + transport. (If she does get the placement offer on Black Friday, I’m pretty sure the LEA will be hoping they can get a deal!).

Then it goes back to the LEA who have to agree that the level of funding is appropriate to her statement.

This may have to be done at yet another Panel meeting which are only held on Thursdays.

So the severely optimistic start date of 1st December has turned to dust before the social workers eyes.

This whole process has been one of utter frustration. I have sat and read about lots of people getting statements and EHCPs from the same county, some pushing like I have, and some not, all starting after I did, and all getting or who have their kids settled with their child’s new school or level of support. Yet every time the phone rings for me to go back to talking therapy I have the same conversation about not having any time to do it. That my 9 hours respite is gone before I can factor in 2 bus journeys and a 45-50 minute appointment with yet another person, who I have to start all over again with.

Meanwhile, I am hanging every ounce of hope that it is good news tomorrow. However that nagging voice, the one that has scoured my memory to find every single incident where things just don’t happen for us. The struggle to find a single good thing that has happened without a fight or a loss of some kind.
I am terrified of her not getting this placement. I know I am struggling to hold it together some days and I feel I just do not have the strength for yet another fight.
I don’t know how I’ve come this far. I know if push came to shove I would give everything to getting Dinky the support and help she needs. However it is disgraceful that parents have to do this.

I have lost track of all the other things I’m supposed to sort out while getting the placement for Dinky.

I completely forgot that I had made a complaint about how long this has taken and that they had 10 days to reply. That was on the 16th of October… Have they replied? No.

So yet another thing I have to chase. The irony is not lost on me that I am chasing a complaint response past the deadline about the fact that the team couldn’t meet the legislated deadline!

I ended up leaving a semi controlled rant on the social workers voicemail yesterday after chasing round the LEA for someone who a) picks up the phone and b) knew anything!

She phoned back today asking how she could help. THAT is what you need when things suck and you begin to lose control of that feeling in the centre of your chest which makes it hard to catch your breath. Not for services to take offence and leave you more alone than you already were!

So the social worker is going to contact the LEA and explain that if they have seen me upset before it will not be a patch on how upset I will be if Dinky doesn’t have a placement start date for the day after the winter holiday!

She is also going to try and make some headway on the personal budget request tomorrow.

I think she is starting to see how I work, and she doesn’t blame me for struggling to deal with absolutely everything at once. She doesn’t even know about the fact my brother and little sister have contacted me again. Again around Christmas. I don’t know why I agreed to do it, but I have agreed to go up to my brother and his partners house to see them and the kids on Saturday with Dinky. My little sister is going to try and pop round.

The sad thing is they have to do it all covertly and round the corner from my mother’s house because she would create all merry hell if she found out. So I can’t post on facebook or say anything just incase she finds out.

Maybe I just don’t want to be so alone.

Who knows.

So the next two days could go very well, or they can do their best to break me… Although if the last 28 years hasn’t managed it, I doubt 2 days can!

So I shall finish my Baileys, and try to get some kip before dinky wakes up and I have to get her back off to sleep.

Fingers crossed!

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Christmas lights switch on

Quick update on the 3rd school assessment day for those who don’t follow the facebook page for the blog… Dinky had a much better day on the 3rd day, she came home quiet but after an hour was back to hulk smashing and shouting “Puny Human!”. Now it is a waiting game to find out if they are going to formally offer her a placement, and for LEA to agree the level of funding, and then transport has to be organised. I’m guessing it will be after Christmas, but the social worker still feels that Dinky can get a few days in before Christmas holidays.

Talking of Christmas.. Yesterday was the big lights switch on where we live.

I’m both utterly amazed at how well she did, plus a little sad that it was so blinding obvious that she is different to other kids.

We went to see Santa, due to her autism, we jumped the queue at the total disgust of some of the other parents, despite Dinky being in her new wheels. I am so used to this by now, that when someone said
“Excuse me, the queue is actually this way”
I replied
“I can actually see that, however my autistic daughter can’t cope with queues, so the lovely elves have said that she can come in this way to see Santa”
She went red and turned away.

Dinky got to go in and see Santa after another child in a wheelchair had gone in.
Santa was lovely,
“So, what is on the top of your Christmas list?”
“Haven’t done one”
“Oh, if you did one, what would be at the top?”
She shrugged “haven’t done one yet”
I couldn’t help but giggle at the fact Santa had no idea how to react. I said that she really would like some frozen toys or disney infinity characters.
He said he would see what he could do, and that she should send him a letter as he might forget, as he is getting old!
He gave her a gift, they took a really cute picture and we left (buying the picture as we went!).

We went out to find the stage for the lights on. We had a look at the stalls, and dinky got her face painted, went on the little kiddies rides and we went back to the stage. We went to the front as the speakers were at one side and a little further forward.
It wasn’t as loud there, especially as Dinky had her ear defenders.
She liked the music.
As the switch on got closer more and more people tried to get at the front. Dinky didn’t like it. A guy from one of the local papers took a picture of her with the flash which led to her getting really upset and lashing out at me.
We saw 2 kids with wheelchairs being let through the barriers avoiding the masses, so I asked if Dinky could too as she was getting upset by the kids around her almost sitting on her feet and lap.
They let us through with her wheels.
She instantly relaxed. As the lights went on all the people cheered and answered the MC, but not Dinky. Completely unaware of the protocol.
The lights went on, and then fireworks started, everyone looked at the fireworks, but I had show her where the fireworks were.
It doesn’t quite come across in writing, but to see all the other children knowing instantly what to do in that situation, and seeing Dinky completely lost was hard.
She loved the fireworks. They weren’t all that noisy but the colours and rate they went off was brilliant. She was so excited she was flapping her hands and giggling.

I was so proud of her for managing 2 hours of music and then fireworks! She said her ear defenders were good!
On the way home she played on her iPad and giggled loads at her white tiger face paint reflection in the window.

I have noticed that she is much calmer in her wheels. I don’t know if it is a culmination of all of these things or just a couple
-no demand to walk
-no other demands (stay close, hold my hand, come here)
-weighted lap pad in the playtray she puts her iPad on
-listening to music and playing games on her iPad in boring/loud/busy places completely zoning out.
-having a sensory shade for bright lights in shops.

I have noticed outside meltdowns are now a rarity rather than a given.

It is good, it means we are not trapped inside and Dinks is happy to go out still, even if before she didn’t like going into certain places.

In other news, we got word that my application to get a place with a garden for Dinky has been approved. We have been given high priority/Band A for bidding. So we could move by summer next year. I told Dinky and she was all ready to start packing and saying that we needed a trampoline and pink grass with a grass snake like her SN clubhouse! Pretty sure she would like a sandpit too.

So I had better get saving for removal vans and carpets (they always rip out the carpets before re-letting a council property).

Currently Dinky is playing disney infinity and is learning how to customise things using the characters to explain it.
Her favourite thing today has been to wait for my dad to walk on an area and then delete the floor so that his character falls out of the sky!
I love her giggle.

Social workers and Dinky goes silent

This morning when Dinky was going to school I was going to host the social workers.
Dinky really struggled this morning, she was happy to go to school, but very anxious and deliberately went as slow as possible, but by happy coincidence we were up at 5am- so it wasn’t a problem!

She went in the car ok.

I tidied up ready for the social workers. Dinky’s social worker had to bring a friend, because parent carer needs assessments and personal budgets are not normally in the remit of the referrals and assessments team. So we had someone from the child disability team come out and do the forms with us.

They came in and sat on the sofa and pulled out a booklet… She handed me an identical copy. It was the same format at other ‘star’ maps I have completed- the family star and the recovery star. There are sections with 4 statements and I have to pick which statement fits the situation. These were child disability forms, so there were a couple of questions that weren’t relevant.

I think they both realised after a couple of questions that I was right, that the severity of a persons autistic spectrum condition is not linked to their verbal or intellectual ability, but the severity of the symptoms of which the condition was diagnosed.

They realised just how difficult it was for both of us dealing with the PDA. Obviously Dinky struggles with the condition, my role is slightly easier than hers, but I have to try and manage her environment in order to keep her on an even keel.

As it turns out Dinky has a very high level of need and due to my PTSD, they agreed I need more help to meet her needs and mine. They are going to try and get me on a team teach course so that I can learn how to restrain Dinky properly, for her safety and mine. They said they can’t promise when it will be done but that they will do their best.

They left a booklet on personal budgets and other information.

I still had a couple of hours while Dinky was at school, so I managed to do some bits that I needed to do.

I waited at 4pm and saw the car pull up. I ran down to open the door, but Dinky was sat in the car still. The 1:1 said that she hadn’t spoken all the way home. She had no grin and no bounce. Dinky doesn’t do tired, so it wasn’t that, she also didn’t look tired, she looked like she had shut down.

I got her inside and asked her what she had done at school. She said ‘I don’t remember’. She asked for Disney infinity on, and that was all I got out of her.

Her link book said that she was ‘happy’ to do assessments in maths and speech. However I’m not sure that is true, considering they later went on to say that during the speech assessment Dinky fell off a ball and bashed her head on a cabinet. It probably stopped the assessment, and part of me wonders why the hell she was on a ball during a speech assessment and why they did carry on when she did? To me it screams avoidant/anxious behaviour. She need not have hurt herself to get out of it.

Poor kid has been in the wars as she also hurt herself in the gym, cutting her chin.

She was completely engaged in her game, I had to give her visuals to pick dinner, I had to put her in her new wheels kicking and screaming to walk the dog.

I left her be, but had nothing out of her for 2 hours.

Bedtime was interesting, but her minion onesie was dry, so before she went to bed I got her dressed and she said “Me minion”. That was It, that was all she said to me. This is so unlike Dinky. Dinky doesn’t do shut outs, Dinky does full blown riots. Neither is good for her, but obviously shut downs are less destructive and painful.

When anything is the opposite of what it should be, it is cause for concern. I’m going to check on Dinky before I go to bed even though the nurse said she was fine.

I knew this would be tough for Dinky, she is starting all over again, in a place she doesn’t know. I was so relieved that yesterday went so well, I wasn’t prepared for today. I am dreading how things will go tomorrow.

Assessment days begin for the special school!

Today was the first of the 3 assessment days at the special school the LEA have agreed should be able to meet her needs.

I loved the school when I went to look at it. 90% of the students are on the autism spectrum and they have an understanding of PDA.

On Saturday (3 days ago) we received the laminated pictures of the school and all areas Dinky will be in, plus all the people she would be meeting.
She was anxious, but the thought of the dog (they have a reading dog), the play room, sensory room and playgrounds made her excited. So it was a mixed bag. I also agreed to get her the characters she wanted from disney infinity if she went in nicely.

This morning, Dinky spilt her milk everywhere and didn’t want to take the dog for a walk but we were ready when the 1:1 came to get us- armed with Simba and a shark!

We got to the school on time and TA came out, she had a binder with now and next on the front and tons of visuals of the school and staff inside. She showed Dinky where she was going and what they were going to do. I did get the ‘save me’ look, but she went off really well.

I of course, was a nervous wreck once we had left! I wondered how she would cope, how she would be at home after… I just hoped that she would love it.

I got home and arranged to take the 1:1 for lunch before we picked her up from school.

We got back to the school and dinky came out happy!
She was a bit all over the place and full of beans but happy!

Apparently she had fallen over quite a bit and didn’t engage well with the group stuff, but she had a good day.

Dinky even said ‘see you tomorrow!’ That is how much she liked it!

When in the car she told me she read to the reading dog, and that Thursday they were making a cake!

We have had lots of repetitive speech, I had to take her to walk the dog in her new wheels because she point blank refused to walk and I didn’t want to push the issue.
She has been ‘on edge’ since we got home, but she is now verbally stimming while playing ‘let’s throw the characters off the island’ on disney infinity toy box!

It will be dinner time soon, and then I shall have to help her get dressed tonight to avoid a full scale meltdown, but she is happy to go back tomorrow! That is AMAZING!

So 8am she is being picked up in the morning and she will be dropped home at about 4pm.

Fingers crossed she has another good day tomorrow! 🙂