In my last post I explain that I wrote an email about how poor the services have been regarding dinky. I was given the email address by the lady who came out to do the fun and breaks assessment/registration. Turns out it was to the strategic commissioning manager, child disability, children’s operations, for our county council! (It does seem I have a knack for accidentally getting in touch with the higher ups!)
This is most of the email I sent
Dinky is a great kid, and I am lucky to be her mum and I couldn’t be more proud of what she has achieved! She is also very cute and funny, however, she can be extremely challenging.
I try my best as her mum. I have read loads of parenting advice, books, websites, ect. I have asked the health visitors and others involved in her care what I can do better. I have tried everything suggested. Now I have found something that works… but it has taken all of what is to follow for me to get there, more so I had to find it myself…
Health visiting team
– Made referral for speech and language and didn’t follow it up appropriately
-failed to notice the things that I put down to just uniqueness.
-wouldn’t let me see her file as “it wouldn’t be fair to Dinky to have some things written down”
– Looked at things and took the easy way out, blaming everything on our housing blip.
– Dinky saw a play therapist, but had no other support in school despite her tendency to hide when ever school work was mentioned.
– The head said that school 2 would be used to dealing with families like mine
-Took 4 weeks to get the basics for her (Coat peg, name in class)
-Excluded from a school trip after an ultimatum of I attend or dinky doesn’t, after being told she was doing really well
-Communication book failed
– took 5 weeks to see the SENCO- despite being told a month before she started that she as on the SEN register at school 1
– She was not offered any support
– the IEP interventions haven’t been carried out by school, apart from printing the social story and the now and next. (also after reading up on them it also isn’t SMART at all)
– the head teacher makes dinky sound like she is out to conquer the school grounds and set up her own regime
– initiated in Jan, went to planning in February
– new LP in May after school change and reluctance from the new SENCO
– One TAC only myself, LP from integrated services and the head teacher (both of whom have only met her on a couple of occasions and not for long).
– Outcome of TAC- cant do anything until she has had her assessments (which is wrong)
Family link worker service
– after a 3 month wait was called in May and told they couldn’t help as Dinky was at an academy
– Was called again in august to arrange a visit where I was told she was supposed to be early intervention… we could have done with that back at playgroup!
– Meeting with FLW was spent correcting mis information she was giving on DLA, diagnosis, access to other support services ect
– Saw Dr M lovely man, had no idea about PDA, which is an autism spectrum disorder. The strategies of which are the only ones that work with dinky. I have been using them since March with increasing success (as long as school isn’t mentioned).
– Report from Dr M is full of mistakes. D.O.B incorrect. PDA is an ASD (and was misspelt), but he says there are concerns over PDA but not ASD? mis information and mis-representation of the appointment
-I spoke to Dr ABC, clinical director of paediatrics for the trust. Who said she expects the paediatricians to have at the very least, knowledge of PDA.
– Doc also said she has arranged for Dinky to see someone else.. on contacting the CDC 3 weeks after the date on the letter, they have no record of this.
We are at the point now where I am worried that Dinky is not getting the correct support in school which means he needs are not being met. This is what causes her challenging behaviour.
The school wont listen to me and want a diagnosis, which you can not get if the consultant at the CDC doesn’t know all there is to know about his field.
I know I am not a medical professional, I may be wrong, but these strategies are the only thing that makes a jot of difference in our lives.
I must say that SN superwoman who runs the SN group has been utterly amazing and given me the support we have sorely missed out on so far.
I end it saying that I would just like things to be easier for other parents.
I got a reply the very next day!
Thanks so much for emailing me and sharing what’s happened, I really appreciate you taking the time. Ok a couple of things to kick off with are:
would you like some help with the current situation in school as I’d be very happy to talk to colleagues to give you some support in challenging what’s going on? I could also sort out for a parent supporter to attend any meetings you have to go to like TAC meetings.
With your permission, I would really like to share your email with senior managers of the services you refer to. This wouldn’t mean that you were making a formal complaint (although please do if you want to – I can help with that) but it would be me raising the issues on your behalf. You’ve set out the battles so clearly and it really brings it home to people. Just let me know.
Do you know about Parent Carer Forum? They have over 1000 members in the county but also a smaller group of parents who are working with us to improve things. I’d be happy to explain more. You may feel that you’ve got enough on your plate at the moment but there is a lot of changes we’re trying to bring about at the moment like new specialist Health Visitors based in the CDCs, re-designing the Speech and language therapy service, trying to work up a behaviour pathway so parents do get the right support at the right time. Loads more
I’d be really happy to meet up with you if you’ve got time and we can talk some more. My job is anything and everything to do with improving services for families with children with special needs and disabilities.
Which sounds great. I have emailed back to confirm that help challenging the school would be more than appreciated! I don’t want to make a complaint but hopefully the changes that are coming and any changes that could come from what we have faced would be enough. And given my contact details for her to contact me.
I also added the informal exclusion, which I can not believe I missed from the initial email!
It SOUNDS positive, but I will hold off celebrating until I see some action. There is a reason for the saying … actions speak louder than words!
Yesterday I went out with Dinky and my dad to an indoor adventure playground.
I do not think I could have been angrier with my dad, and that was BEFORE we left the train station!
I had been wondering all week what on earth has made dinky kick off everyday this week.
This summer has been calmer, I feel due to new understanding of why she is the way she is. I try to accommodate her need to be in control and give her choices. Of course it doesn’t always work, I am not perfect, therefore still slip up occasionally and she has still had meltdowns, but no where near the amount we had before I found out about PDA.
Monday, I put down to me abandoning her on Sunday to do the fundraising.
Tuesday, I put down to trying to be compliant on the trip.
yesterday I got it. Every little thing my dad was pulling her up on on the bus.
“Get away from the window, don’t lick that, stop humming, keep still, stop that!” (notice they are all direct demands)
I tried telling him not to talk to her like that, but he snapped at me. We got to the train station and he was being awkward about the tickets, I tried telling him that we have to go through the gate a certain way as Dinky got her bag stuck once, he wasn’t interested. She was annoyed at me for saying she could only have her magazine on the train and was grumpy. Not the best time to mess about with her. Oh, but my dad decided not to play her game her way and watched her get angrier and angrier. She hit him and he shouted at her. Which could have all been avoided if he understood her. Even after I told him to stop winding her up, he was at it again and she was unhappy with both of us.
I was starting to get extremely stressed out at the idea of being stuck in a metal box on wheels with an anxious, wound up 5 year old and a childish, ignorant and muppet of a 50 year old- with a whole bunch of strangers witness to the dysfunction before them.
Dinky didn’t want my dad and was now ok with me as she could now have her magazine. She actually read for me, and my dad sat on the other side of the 4 seat area. I was careful not to give any direct demands and gave her a pen. She filled in quite a bit of the phonics workbook cleverly disguised as a challenge! She did cotton on ear the end, but no fuss was made and I read bits to her. I tried to explain to my dad that what he did on the bus was direct and see what can be achieved with being in direct. He snapped at me again.
I had had enough! We got off the train and he was being fussy. we got lunch and he was snapping at dinky.
When we got to the bus stop it was loud and busy, so dinky was spinning and he was shouting at her to stop. I told him that maybe he should reconsider, and that she should spin as it is her way of unwinding. He said I was undermining him. To which I had to remind him that he is MY parent not hers, I am, and I make the rules. On the bus he was at it again with the direct demands. By the time we got to the place we were going dinky was about to flip out and I was seriously considering telling my dad to go home!
Dinky kicked her shoes off and ran into the massive play structure. However she needed her shoes on as it wasn’t soft play and most of the kids had shoes on. I tried to call her down but se was off. My dad got hold of her and was shouting at her to do as she was told… yes like that is going to get us anywhere. I told him to get a tea, Dinky and I could sort this out. He refused, then got annoyed when Dinky kicked him!
By this point I had a screaming child going into meltdown and a stubborn male refusing to back down… I wanted to go bang my head off the wall!
As dinky was trying to calm down, I managed to put her shoes on for her while repeating that we were not going home, it was for her safety. finally she had her shoes on, she was still angry and tore off around the centre.
I took my dad to one side and asked him what part of DEMAND AVOIDANCE he did not understand! He told me to F**k off.
Then it hit me.
He had her sunday, Monday morning and Thursday, if he talked to her like that, and wound her up like that, then he had been dealing with meltdowns pretty much the entire time, which is why she was so difficult and anxious after he left, why she didn’t want him to come before we left, and why he was so stressed out and out of patience.
She had a good time while she was there and I told my dad to just leave her for me to deal with.
On the way back my dad took dinky to get a kite and I went to the phone shop as my phone hasn’t been working properly. I was almost done with my upgrade when dad and dinky walked in.
Cue meltdown… why?
because she wanted me to have the old phone. In her words “NEW BAD!” my dad had to take her out and try to calm her as she was ripping the shop apart.
I explained that she was under going assessment for an form of autism, and they seemed ok with that. I wanted to get out of there as soon as I could. Which meant I lost all my contacts as I traded in my old phone and forgot to save the contacts to memory card! DOH!
My dad left then, and I got dinky home, bathed and fought to get her to go to bed.
Thursday will be the last time he has dinky during the day without me. Sure it must have been difficult for him, he did say he struggled getting her to go to bed Sunday, but it must have been harder for her.
This is why I am really worried about school next week. School refuse to take PDA strategies on board because Dinky hasn’t got a diagnosis.
Hopefully I can meet with the strategic commissioning manager and things can change.
Right now I cant trust the school, or my dad to put her needs above their own pride. So I will fight the school, and I will tell my dad that he is no help right now if he winds her up and a) has a go at her for reacting in ways she CAN NOT control, and b) walks away and leaves me to deal with the aftermath.
I know he was trying to help, but I have already told him I have enough people to fight with the CAF being useless, the school being useless, the FLW being useless, the CDC being useless and dealing with her myself… that I cant deal with having to fight him too. I have asked him to read up on PDA, he refused, I asked him to look at how I parent dinky he agreed, but doesn’t do it himself.
I cant have this. I cant have him around if all he is going to do is wind her up and cause us more hassle. He is my dad, but Dinky is my responsibility, if he is going to make her worse, then he has to go.
can I go bang my head on a brick wall now?