This week I have decided enough is enough.
After the phone call from the paediatrician on Monday, I sent an email to the strategic commissioning manager for children’s disability in my county. I have had enough of dinky being left to struggle. My support worker sent an email to the local mp to back me up. She said she wanted to do it because they can’t help me because I’m completely invested in fighting for Dinky. She understands why as she has her own kids, and kids come first, but it is ridiculous how many professionals have let me down in the past, having all of these professionals letting dinky down is taking its toll.
I have decided one more push from me too.
Yesterday was Dinky’s school Christmas performance. I was intrigued by the fact Dinky needed a tiger costume.
So I dropped her off and went to have breakfast, and then went back.
When I went into the hall dinky had the TA from her class on one side, and the head of the nurture group on the other. She looked so cute in her tiger onesie and she had painted a tiger face and put glitter on it. It is beautiful. She was happy to see me, but as more people came she got a bit bouncy.
As it started, dinky wasn’t singing with the others. She was watching me and smiling, occasionally pulling a face (not in a horrible way). When her class went on the stage for their bit dinky started singing! There were 2 lines on the edges of the stage and a circle of children walking in middle. Dinky was the second child in in the right. Then she got bored, so joined the circle. Instead of going with the flow, her teacher went red and hissed for Dinky to get back to her place. Which led to dinky getting annoyed with herself and punching herself in the head. I felt for her at that bit… She stopped singing and refused to sing anymore. At one bit she was sat with the head of nurture and put her head on her lap! Dinky does this on busy buses sometimes as she feels comfortable (and no one can resist stroking her soft fringe!).
I was surprised to watch her wave at me and go out with the head of nurture group.
Watching her sing was lovely, but I hate seeing her struggle. I walked home replaying the bit she did do in my head. I got to my front door and pulled my key out, and then my phone rang… School have their own ringtone, so I knew it was them. I picked up before I let myself in. I was being asked to collect her earlier than the agreed early time. I told them I wasn’t happy they phoned, how are they going to learn strategies of dealing with the walking around the school if they send her home? I also asked how was this a consistent message for her? Sometimes she can walk round the school sometimes she gets into trouble, other times they call me and I pick her up! Realistically that is what she wants, so they are being played by a 5 year old!
The male deputy… Who I haven’t really spoken to came across as a lifeless puppet of a muppet! All 6 foot 5 inches of him comes across as a little boy rather than a leader. I couldn’t see him being strict with the kids, nor much of a authority figure. So I had to take my excited tiger home.
Dinky couldn’t wait for the soft play special needs Christmas party! It was at 5pm, so after her spinning, then rocking while playing a game on the iPad, we watched 2 films. Ice age 4 and…. Ice age 4! Then I got her clothes out… Nope… She wanted to go in her tiger costume…, fair enough!
We went to the party and she was a bit anxious on the bus as the Halloween party had no lights on and the diner was a buffet table. I told her that after a few of the parents talked we asked them to change it to suit her and her friends. So we got there and the lights were on and there was no waiting in lines for food!
Last time they gave us a treasure hunt list and a pencil on arrival and said it needed to be done by a certain time..of course dinky said “no!” It stayed on the table, I think it was picked up at one point as a few of the kids we were sat with were doing it, but she soon got bored and it wasn’t done. She wasn’t bothered in the slightest.
This time there was a table with a box of pencils and treasure hunt sheets in a leaflet holder tray. dinky walked straight past it.
She spent the first hour in the disco room with the lights as they had a young lad working in a penguin onesie and Dinky was besotted with him!
When she came out she went for a wonder, and found a sparkly box on a table. She was annoyed to find pencils. Then she saw the sheets. She completely shocked me by picking it up and going round filling it in. When she had finished they called for them to go in. I took it over as dinky refused to go. Looking at it, she had written her name and age! I was very impressed!
5 minutes later, her name was called, she had won! I was so proud of her!
Typically she opened the gift bag prize and it was colouring so he chucked it on the table and ran off as I was trying to tell her how proud I was…. Never mind!
On the way out she got another gift bag from the elves. Inside was a teddy Rudolph, which she only let me look after while she was at school and swimming!
Today, I went to the local autism coffee morning… It was nice to be with people who understand and who face similar difficulties and share advice.
When I was there I got a call from integrated services lady. She asked how things were so I clued her in. She said she would come and see us, and that she had invited my support worker to the next TAC and was looking into more support for us. I was a bit taken aback and said “I thought you were no longer allocated to us as you had spent too much time with us and your manager couldn’t justify you being involved anymore?” She sheepishly responded with “well, I got an extension.” Yeah whatever! If she spoke to my support worker then she must have been contacted by the local mp as that is the only way she would know who to contact!
I hate professionals who try and make out they did something extra to help you, when they have been told to! There was a couple of seconds silence while I contemplated saying this out loud! She said “that is… If you will have me back”, I told her it wasn’t her I was angry with, it was her manager and how it was done. Originally she had come to observe but ended up pulling her from our CAF. she said she understood,so she is coming to see us on the 2nd Jan 2014.
When I got home, I phoned pals, and got through to health watch. The woman on the phone couldn’t believe how bad things have gone just on the health side. She got back to me with the actual pals number and a few other numbers.
I phoned the real pals number and again, the woman on the phone couldn’t believe how much of a fight it has been to get dinky seen! She said that she didn’t find it acceptable and after looking at my last call during the holidays, after the first paediatrician, she couldn’t believe we had been sucked into the CDC- CAMHS battle.
She was brilliant, she said that she is going to get onto the head of paediatrics and the head of CAMHS, and ask them to get into contact with each other and decide who is going to see dinky and make the definitive diagnosis so that we can get the right support in place! She said I will hear by Friday at the latest!
I emailed the sen case worker and asked for her to let me know the outcome of the statutory assessment application that had gone back to panel today. I haven’t heard, so will continually phone tomorrow until I get an answer!
This is my last push before the new year. I am going to try and relax with dinky over the Christmas period and give her as much as a demand referee zone as possible!
So I shall update tomorrow! Hopefully with good news!