Mapping meeting

Well that actually went ok.
I think this was the first actual meeting where no one had questioned the provisional diagnosis, and everyone was on the same page about Dinky’s needs.
We started off discussing who everyone was, it was interesting that there were 2 education welfare officers, one from the school and one from the county council.

We then went through ‘what isn’t working right now’

Her not being at school was the first thing brought up. They said they were concerned she wasn’t receiving an education.
– I told them that I was educating her at home, and that even when she was in school she was in a room with a 1-1 no access to a teacher and her IEP target was to participate in 75% of learning activities, so how much learning was actually taking place? Dinky still can’t form her letters properly!

They talked about how she should be in school and that they needed to check that she was getting an education
– again I reminded them that I was doing stuff at home with her and that she wasn’t actually receiving an education IN school. If I was home educating this wouldn’t be an issue

They said it would still be an issue as they would send a home education person out.
– I said that it would just disrupt Dinky to have someone come out, not understand Dinky’s needs just until September and couldn’t give me further advice than what I am already doing more than what the school would do.
I explained about dinky practically kicking the special needs health visitor out of our house on Monday, and how difficult it is to know how she is going to react to people coming into her safe space. I asked them about me getting her signed off school.
– they said with what?
I said her high anxiety and additional needs, that the school isn’t suitable for her.
– they said I had a legal duty to send her to school as she was on the roll. They said I should take her off roll
I said that My duty is to protect Dinky and not sending her back there was me fulfilling my duty. That I wouldn’t take her off roll because I don’t want the LEA to get he idea I am selecting to home educate because I am not.

It was interesting to see that on paper the school and integrated services said my parenting was a concern, but they were given plenty of opportunity to say it at the meeting… But didn’t!

They discussed the fact that we are isolated and said hat another issue with Dinky’s non attendance was the fact that she was missing social interaction. I told them this was not true, as much as we are isolated, I have tried to make sure Dinky has access to play with her peers as she wasn’t at school. I told them we went to the park up the road and had been to her SN group and going to any other meet ups with other kids with additional needs.

Still they went on about the structure of school and how it would benefit dinky. I told them they were wrong, she couldn’t cope at school, hence the exclusions ect. The deputy tried to say that she had a good relationship with the 1-1 they employed for dinky and since she started with Dinky there had been no incidents of running out of the school…. I said… FOR 3 DAYS!!! They hadn’t even attempted learning.

I told them she was not going back to the school!
They said they needed to work out what they were going to do until September.

The SWs manager asked if I missed dinky when she was at school, I said no, possibly a little too quickly! I said I love her and she is my world, but I like the break! They said it was good that I was happy to leave her. I said that I worked and she had a childminder before until her needs became too much as the minder had taken on a lad getting his ASD diagnosis, and I had to leave my job.

They discussed my dad and how he isn’t fantastic with her, and that we have no support network. They asked if I had any ‘girlfriends’ to hang out with and chat to. I said no, I have made friends, sort of, through the autism support group, but we don’t do ‘chit chat’ we talk about the kids, about autism, about how difficult things are for our kids sometimes.

I was asked if I had any hobbies, I said football. They asked if I would like to go back to it. I said yes, so they are going to look into it.
The SN group leader said it was a concern that I do not get enough respite. They discussed what would need to happen for it to go into place. The SW told her good that short term was no good due to the fact that Dinky doesn’t do well with change so as soon as she gets used to it, it disappears.

The integrated services lady said that she asked about respite and was told I should send her back to school. I said NOT A CHANCE! I won’t get respite by putting her somewhere she is not happy. It wouldn’t be with the fall out.

We moved onto strengths and ili must admit it was pretty awkward actually being praised, after the continuous fighting, it was nice to be told I was doing a good job! They commented on how much I put into helping Dinky- but to the point where it verges on being harmful to me. That we have a very strong attachment and Dinky is celebrated with having her own wall with all her certificates and proud moments on.
Even the deputy from the school said they can’t fault how much I put into place for her.
They said I do my best to keep her safe, and happy and always put her needs way above my own.

I said that as much as she is very challenging and can be hard work, she is awesome. I love her to bits and I am proud of her.

We discussed where we go from here, and that family indicative was brought up and I said no! That I’m not having them involved, that I do not abuse Dinky and she isn’t set for a life of crime due to being in poverty. They all started saying “no that is not what it is”, so I told them to look on the police website and watch the video, look in the county council website and tell me you would sign yourself up for it!
The county autism support person said that it isn’t like that, that they work with them and so do the SN group Dinky goes to. I said I don’t care, I’m not having other professionals thinking that we were once on the family initiative as they would then ask why.
They said they would do it as a child in need as she does have complex needs, but that technically she wouldn’t meet the criteria as she is not technically at risk of any danger or harm. But that way they could offer longer term respite.
As far as education goes, they are going to use the provisional diagnosis letter to say that she is not coping at school and the fact that she was at risk of permanent exclusion, to try and get the alternative provision team to do some work with her until September via a home tutor. Apparently the special school have until the end of this week to say whether or not that can take Dinky on, and the amendments need to be made to the statement and then we should know what is going on for September.

There were a few points where I got annoyed and made comments about the school, but the deputy mostly agreed with me.

So there we have it, child in need to start soon. Just a shame that the SW is leaving, as she was good. I just hope that we get a decent one. One other good thing! No more integrated services!

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social worker and mapping meetng tomorrow

I wasn’t going to write today, however I am finding it very difficult to write my thoughts about tomorrow properly on word, but I am quite good at addressing the faceless someone that I write this page to.

One of the reasons for this that I spoke to the social worker ahead of the meeting.

I started off by asking who had said they coming and how the meeting was going to run, was it going to be like the TAC meetings.

We have

Social workers boss

Social Worker

Me

SN group leader

Local autism support person

Integrated services lady

Jr Muppet from the school

Education Welfare officer

Possibly someone from the SEN team and the new paediatrician but they haven’t got back to the social worker. She did say she tried to explain how important this was to the paediatrician, and hoped she would be there.

She said it was a mapping meeting, signs of safety.

I had no idea what this meant. She said we go through and discuss area of concern and areas of strength. Then a plan is made from there. She asked how I felt about it. I said I was worried that I would get angry with the school. I didn’t want to, but they have given me plenty of cause to be that angry.

She said that I am actually allowed to be angry, and that she knows I haven’t been happy, and I have made that very clear. I joked that I didn’t know if my comments were clear enough, and she laughed. we discussed other people attending the meeting and she said she had never done a mapping on this scale before, but because there was a history of those involved not communicating and having other ideas, it would be good to get everyone together and discuss this properly so that everyone is on the same page.

we spoke about the format again, and I said it sounded like her assessment but with more people contributing to the outcome. Which she agreed with. I said the thing that concerned me was the fact that some of the things we need to happen are being kept out of our reach by gatekeepers. So her next step of me having the space to work on my PTSD is not going to happen because every time I have asked for respite I have been turned down. She said she understood that and the most likely outcome was that we are allocated another social worker at level 4, which would be child in need, and that would be because of Dinky’s complex needs, and they would look at respite through direct payments. She said it wasn’t set in stone, that sometimes she thought a case was definite child protection and it turned out that they were wrong at mapping.

We got onto the school and the whole parenting thing. I said that I am sick of my mental health being used against me, and the school calling me ‘Very strange’ and saying my ‘mental health is a barrier’, and my parenting is a concern. I am sick of explaining why I am the way I am, in order to discount why Dinky is the way she is. She said she understood my feeling about this, but the only bearing my PTSD has on Dinky is when I am not doing so great. I said I was sick of the school finding ways to kick me and kick me again, even when they have got what they wanted and Dinky is not there, they still feel the need to stick the boot in. She said that them and the integrated service ladies’ boss were the only ones who ever said it was my parenting however the Paediatrician and other medical professionals say it isn’t you causing her needs, lets face it, The school are not medical professionals.

She said that everyone agrees that it is not parenting. She said she knows it is not me and that I am doing a wonderful job raising Dinky with the needs she has. She said she didn’t know if she could do as good a job as I have done in the same situation. She said that I have been doing a lot of swimming upstream and hopefully this mapping meeting would help.

I told her that I knew it wasn’t me, sure I wouldn’t win parent of the year, but I get really upset when people say it is my parenting as I try so hard NOT to be my mother. She said she has no concerns that I would hit Dinky. She said they need to help reduce the stress so that I would never get to the point where I am so stressed that I ask them to take her away because I think I might hit her.

 

It is certainly refreshing to hear a social worker getting it right. She really seems to have got the measure of the school, and has common sense. Which is a far cry from where we have been. It could have gone the other way, The Muppet could have convinced her it was me like she had the MP and the integrated services boss lady.

The muppet herself has actually managed to worm out of it. She knew she would get a bashing for saying she would ‘fix’ Dinky.

 

I’m hoping this meeting goes well.

I will let you know how it goes

New clubhouse party roller coaster!

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Dinky’s special needs group clubhouse was in the next town, today they opened the new house in our town! Dinky has been counting down the days!
This morning she was a hyper ball of hyperness. She constantly asked when we were going, breakfast was a nightmare, getting dressed was a nightmare, walking sky was a nightmare.
Luckily we were getting a lift with another parent, I wouldn’t have fancied taking her on the bus given the level of anxiety and excitement pouring out of her. She just couldn’t wait to get there.
When the other parent came, her son was in the front and dinky was asked to sit in the back. Dinky did not like this AT ALL. she went into toddler talk and wanted to sit on my lap. She was refusing to sit down at all. Until the other parent offered the front seat. Her son happily jumped out and came and sat in the back with me. Dinky was now happy she got to sit in the front. She had NEVER sat in the front of a car before!
She talked all the way there about lego, Sky the dog and the guinea pigs. The other mum tried to talk to her, but dinky was in her monologue mode. Never let it be said that dinky doesn’t show more traditional ASD traits!
When we got there there was only one other child and a sea of adults
The mayor, the mp, the CEO of the SN group, and tons of other professional type people and organisations.
They had Dinky and the lad we were with to hold the ribbon and the lad who was there first got to cut the ribbon with the mayor.
Then one of Dinky’s friends came and he helped Dinky with the ribbon holding. Which was a good job really because a few flashes from cameras was too much for Dinky and she hid her face and began to cry, I ran over picked her up and carried her off, she was head butting my shoulder, she does not do well with bright lights, I didn’t think they would need the flash in the sunshine, however they used it.
A few concerned people asked if she was ok, so I explained that she was over sensitive to bright lights and especially the bright unexpected flash from a camera.
Then the doors opened and Dinky ran in. I went in after her, she spent a few minutes in the soft play room and then ran into the garden. It is brilliant! The garden has a massive sandpit p surrounded by AstroTurf with an AstroTurf snake hill.
Dinky loved playing in the sand pit.
A child set the fire alarm off (I was relieved it wasn’t Dinky 😉 hahaha), and it seemed, once the alarm was silenced that they did another ribbon to open the garden, Dinky stayed away from the cameras happily building a fort for king Neptune from spongebob square pants.

Later dinky went back into the soft play area, it was crowded over by the door and I couldn’t see what was going on, but I heard her and then saw an 8 year old boy kicking and pushing her, Dinky was giving as good as she got, actually at one point giving the lad a proper right hook. As much as she was defending herself, I had to tell her that she shouldn’t hit back. She refused to leave, and I had to restrain her because the other boys parents were not around and she kept trying to go after him. She then ran off, I had to chase her outside where she went round the side of the building and then found that the gate didn’t have a lock on, so she managed to open it quickly and tried to make a run for it! Luckily I caught her before she had managed to really get out and get in her stride, she kicked and punched me, as I tried to put the gate back, luckily a parent was there to shut the gate for me while I dodged and weaved through the crowd back inside to find Dinky.
(one of the good things about it being a special needs clubhouse is that not a single parent batted an eyelid to see me tearing off after my little person!)
I found her, she had barricaded herself in the buggy room, I didn’t think it was a good idea as there were taps in there. I was standing next to the new centre manger, I couldn’t hear an issue, dinky was asking me to leave her alone, so I told her what had happened and she might want to secure the gate so that more children do not escape. She went off and came back, she went into the room, and dinky hid in the cupboards. She didn’t want me anywhere near her, said I was following her.
Between us we managed to calm dinky down enough with frozen songs and then got dinky to come and try some cakes.
Once she was calm she decided to stay and eat some more cakes, then the fire alarm went off again. They tried to evacuate, but Dinky was having NONE of it, she sniffed the air and looked around, said “I can’t see fire, I can’t smell fire, there is no fire” and refused point blank to leave. 3 members of staff tried to get Dinky to leave, tried to explain that there could be a fire in another room, nothing. They tried to get her to ‘show them’ her favourite bit in the new garden…. Nope, she was not moving. So while the whole building was evacuated, dinky sat at the table eating cake!

Dinky then went off to play in the sensory room, which she absolutely loved!
There was a guitar, and a box full of fabrics, dinky was trying out the fabrics and then strumming, she was really relaxed.
She went back into the soft play and then had yet ANOTHER fight with the same boy, I had to restrain her again with her biting me and hurting me because he kept winding her up and she was going to hurt him.
Then she was back in the garden. She was having so much fun out there.

Then she went into the lounge which had toys and dressing up stuff just as it was time to go. She was wearing a red dress and wouldn’t take it off. She was allowed to wear a dress home from the other house the last time we were there, so she couldn’t understand why she couldn’t borrow this one. I ended up having to wrestle her out of it as the centre manager said she couldn’t wear it out.
I had to chase her and then had to physically remove her, she was calming down and then we had the usual calm down refusal to move due to hunger. Someone grabbed her a cake, but she didn’t like that one, and ended up taking the centre managers apple home!

We went home via mc Donald’s, I hadn’t managed to get the wrist reins on her and once we got the food and headed back to the car, Dinky ran across the road to ‘get to the car first’, she didn’t hear me shout STOP! And she didn’t understand why I was cross and scared. Although she probably only saw cross.
It was a nightmare.

Once we got home she was winding the dog up, I ended up getting her dressed for bed, and now she is upstairs with her iPad and I’m sitting here thankful that my dad is coming over tomorrow so that I can go do the shopping as we are almost out of everything!

It will feel like respite!

I love dinky but today was intense! At one point I had to move away from certain areas because I couldn’t handle the noise!

Fingers crossed tomorrow is a better day for her, however that depends on my dad.
I did talk to him the other night and explained that his ‘helping’ wasn’t helpful as he kept being too direct with her. He has promised to really try to think before he speaks. I asked him not to tell me but show me, as he has said he would be less direct for a year and he hasn’t. We shall see!

The next battle found me!

As if by magic my next battles came in the form of a phone calls and an email.

At least I know what is going to be going on for the next week.

First I got a call from the education welfare officer. She said that she had received an email from the school who requested that she do a home visit. The SEN team had also asked for an update. I told her that Dinky will go back to that school over my dead cold lifeless bodySo she is coming out tomorrow afternoon.

Then I phoned the sen team as I was confused by need to be updated, I thought I was clear that Dinky would go back to that school over my dead cold lifeless body. Typically the SEN caseworker wasn’t in, but the lady said she would get the SEN manager to phone today. (Which he did but I’ll come to that later..)

I then got this email

Hi Dinky’s mum,

I hope you’re both well and had a good Easter. I tried calling but it went onto voicemail. I just wanted to talk to you about a meeting that I’ve arranged for next week for us all to get together to try and sort things out. I also wanted to explain as to why I haven’t closed dinky and am hanging on!

The meeting will be at 12pm on Weds at the family centre.

I’m not about after 3pm today but will be on email tonight although it’ll be better to speak. Please don’t worry about this – it’s nothing bad!

Speak soon,

Social worker

So I phoned the social worker back.

I will just say that Dinky has been very much in her own little world today, and sat at the table with her lego while I had the phone calls. Which was much easier to cope with.

She said that the meeting would involve
Herself
Her manager
Me
The SN group leader
My keyworker (who isn’t involved anymore)
The school
Integrated services lady
And the new paediatrician

At first I said I wouldn’t be in the same room as the school nor integrated services. Also I didn’t see the point in being there with people who are not actually involved anymore or don’t know us. If she took them away it would be myself and the SN group leader.
I said that Dinky will go back that school over my dead cold lifeless body. She said it wasn’t about getting her back into school and that they wanted to get everyone on the same page, she said if the school didn’t come, would I be willing to go? I said that I wasn’t sure. I got the report she had done and I was not impressed at all by the things that the integrated services manager said, nor stuff that the school said.
She said this was my opportunity to say something. She said that they have NO concerns at all about my care of dinky, I said I wasn’t perfect, she said they are not looking for perfect, but she said it isn’t a parenting issue. I told her to invite the school and tell that to them as it would be nice to hear it said to them. They couldn’t make up their minds, it was me then it wasn’t, then it was, then it wasn’t, and then they said what was in the assessment.
I told her I know I get rather stressed and snap at people and I apologise. She said she understood that and that she gets stressed with her children and they haven’t got the needs that Dinky has. She said I need to stop blaming myself as I am doing very well, especially given the fact I have her home 24/7.
She said I am the expert on Dinky. I said they should definitely get the school and integrated services to come and say both of those things.
She said that this was my chance to say what we need, I told her it was also a good idea to go so that I knew what people were saying. She said she wanted to get everyone on the same page and go from there.

It is not ideal, and I don’t particularly want to do it still, the school and integrated services won’t be involved but it will be nice to be able to say – ha! Now say it is me!

So I had to find someone to watch Dinky which is not an easy task. Luckily my local autism family came to my rescue and someone is going to have Dinky at the new special needs clubhouse for me.

I phoned the SN group leader to ask her if the clubhouse would be open. She said it would. She said she was glad the meeting was going ahead as she says we need more support and there is no way Dinky can go back to that school. She is a completely different child since I took her out.

I know I definitely have someone else on my side. Which is good. The social worker has been very understanding and pretty good with everything, she is just part of an assessment team so can’t issue any type of support.

Then after I had given up all hope, I got a call from the manager of the LEA SEN team. Apparently the reason that they contacted education welfare is because Dinky is not at school. I said that it would be more concerning if she was actually at the school! I explained what I have explained to everyone. She will go back to that school over my dead cold lifeless body because:

1) They were not able to meet her needs.
To which he replied “the school hasn’t said that”
To which I said, they wouldn’t as they believe that it is fine to exclude her 9 times in 10 weeks, call me to peel her off the gate and stick her in a room for 3 hours with an untrained TA. However I don’t call that coping.

2) she is not safe there. The ed psych turned her back for 10 seconds and Dinky was gone, which shows what dinky is like there. Also I was called a few times to peel her off the gate, and more. The point is she is not safe and is too unpredictable for the school.

3) they have refused to listen to any advice from the professionals.

4) they have her with an untrained TA in a room with no access to a qualified teacher on a part time timetable. So she isn’t doing much learning.

He said that she had to be receiving an education, I said that I am providing an education, but not close to the one that she should be getting in a suitable school, which the current school is not!

He said that he was just saying that there was no hidden agenda. Behind the contact to the education welfare, he just wanted to make sure everyone was aware of the current situation.
I told him that it might be a good idea for him or someone in the office to attend a meeting next week held by the social worker. He said he was busy but would see if he could send someone.
He said he would call me tomorrow regarding my amendments to the statement as he was just leaving the office but wanted to make the call as I was expecting him to do so.

I hope he doesn’t even consider trying to say that the ‘current’ school can meet her needs, as I will not have it!

It is going to be really difficult to get everything sorted by the time I have to talk to these people.

What I am sure of is that I will fight for Dinky’s needs and I will make sure I get an apology from the school and integrated services, when I confront them about the comments on my parenting!

So yesterday I was gearing up to find out where my next battle is…. Now I know…

Erm… Not quite what I was going for, but never mind!