Another higher up, and Dad vs Dinky

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

 

Playgroup

 

-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”

 

School- 1

 

– 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

 

School 2

 

-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

 

 

CAF

– 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

CDC

 

– 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.

Wednesday, er…

Thursday…

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.

NICE!

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.

Mystery solved.

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?

 

Jabs or no jabs? emails and phonecalls…

I haven’t written for a few days.
Dinky has been to her Special needs group on two days and my dad has taken her to the park today. So I have spent the time kicking back and relaxing!

hahahaha…. that was obviously a joke!

 

No, I have been sorting paperwork, attending meetings, making phone calls, writing emails and dealing with the fall out of her being compliant (mostly) when she is out with the group.

Today has been the most interesting.

This morning Dinky had an appointment for missed Jabs. I did say when they phoned that I thought she was up to date, but they were adamant, so I booked it.
When we were there she was fine, but they were running late. Our appointment was for 9.30, at 9.40 ish Dinky asked why we were there. Normally she wouldn’t ask, but she is getting older and more aware of things around her. I sad she had to see the nurse. “Why”. Because, because however, doesn’t work anymore! “Why?”

Oh dear.

I feel I have to keep Dinky’s trust. If she cant trust me, what hope has she got? So I have said other than the normal kids world stuff, santa, easter bunny, tooth fairy, I would not lie to her, but not tell her more than she needs to know.

This was difficult. She was going on and on. Nothing I was saying distracted her. In the end I told her she was there for jabs. That was it.. she was under the chairs and refusing to come out! The nurse came out to find out what all the commotion was about. She said it wouldn’t be long. A lady came out and saw me trying to get her out and said there was a spider under there… Dinky shot out! It was pure genius and it meant I could move her!

She was screaming and hitting. She was in meltdown.

When the nurse came out I couldn’t move her. I tried to tell the nurse that I think Dinky has had them anyway. She said she would check. A few minutes later and she said that I might be right. She said she wasn’t comfortable doing the jabs with her in so much distress anyway, now she was less sure. She said to take Dinky away and wait for her call after lunch once she had spoken to the immunisation bureau. So dinky was still shaking and crying but seemed to ease once se realised that she didn’t have to have the jabs there and then. Although she was telling me that she would kill me if I took her back there! The nurse had a look at the side of my face as I got an almighty boot, turns out I’ll be fine, which I told her!

I took her to go with my dad to the park and she was still calming down, although she was excited and telling my dad all about diggerland!

After all the things with the Family link worker, I decided to email the woman I was told to email about how poorly the services in our county had treated Dinky. So I did.

Then I got a call from one of the short break services. They have football for her to try and a keyworker to go as her 1:1. I am meeting the 1:1 on Wednesday!

Exciting times!

I also got a call from the nurse to say it was a clerical error and dinky doesn’t need the Jabs afterall. I think se was relieved as that would have been a complete nightmare. However good news! She spoke to the GP about Dinky’s meltdown, and it will go on her records that it was not a tantrum, and how distressed she was.

We are off out tomorrow, and have a lazy weekend planned.. although we might go to the cinema.

Then there are only 2 days before school starts again….

 

 

Bank holiday and the Family Link Worker

 

It has been a trying last few days.

Sunday I went out all day and Dinky was not happy with me leaving her with my dad. He still doesn’t GET Dinky. He nods in all the right places but as I have said previously I doubt he will believe anything until it is in black and white.
Sunday was good though, I don’t know how much we have raised but it seems we have raised a fair bit. The Pub was good too! (YAY… finally managed a night out!)

Well, as much as I enjoyed myself, I was woken by Dinky screaming at my dad and him trying to wrestle her away from my bedroom door. Not exactly the best way to wake up! So bleary eyed, I sort my dad out, as he had inadvertently set her off by saying something the day before he wasn’t sticking to. So AGAIN I explain that he is a muppet. I calm Dinky down to a point, but we didn’t manage t go out for the day as she was in 15 year old mode. Anything she couldn’t control, like the fly, or the time, or the fact that we cant rewind live TV, and she was off slamming doors, screaming telling me she was going to kill me. Charming… cheers dinky! She was also bouncing off the walls, so much so she was seriously giving me a headache. So my dad decided to take her out…

BAD IDEA!

He said he’d take her on her bike… Nope she wanted the scooter.

He said they will go after 3pm… Nope Dinky wanted to go out at 1pm.

He said wear her usual trainers… Nope she wanted the new, school trainers.

He said put the helmet on… Nope, she didn’t want to.

When I finally managed to her to agree to wear her usual trainers she began seriously kicking off. My dad said ‘Well you are not going then!’ She kicked off even more…
Finally I put her trainers on for her, and at 3.40pm they go on the bike… 4.15pm they are back.

We have dinner and then she goes in the bath. Soaked my entire bathroom and used the whole half bottle of Elmo bath wash! She had also got out of the bath got some toilet paper and had wet it to throw on the ceiling!

At 6.30pm I got her to take her melatonin and that was that!

Today Dinky went to her group to the farm. On the way there she was saying she had no energy and couldn’t walk. She was talking non stop. I asked why her mouth was still going if she had run out of energy and her response was… “Mouths don’t runned out of emergy!” No, obviously not! I had already had to explain what ‘being a handful’ meant, why the sun and the moon were both up, why ducks and swans swim in our pond together, why she doesn’t go to the school right next to our house, why she cant phone granddad to tell him that she was going to the farm, and so on and so forth….

So she was off and instead of sitting on my backside for a few hours I had to come back, clean the kitchen, put all the toys she HASNT lined up away, dusted the living room, removed the toilet roll paste from the ceiling, cleaned out and fed the guineas and then let the FLW (Family Link Worker) in.

Now she seems nice enough, but I would be lying if after spending time with the local autism group, and trying to get some respite in, if I have to explain PDA to anyone else I think my head will explode!

Also I am very close to banging my head against the wall if anyone else says we need a diagnosis to move forward!

The whole meeting was of me trying to tell her that her ideas wont work and she is wrong about a number of things.

For example….

No you DO NOT need a diagnosis for DLA

No sticker charts DO NOT work for Dinky

No you don’t need a diagnosis to join a support group

No you don’t need a diagnosis to join the special needs group or special needs swimming- DLA is the gateway

No you don’t need a diagnosis for our counties Short breaks service, but getting anywhere takes time

Ye I have done visual timetables

Yes I have done now and next

Yes I have read magic 1,2,3 and watched supernanny, and joined parenting groups… parenting Dinky IS NOT like parenting a NT child

PDA strategies work

Just because YOU haven’t heard of it DOESNT mean it doesn’t exist.

Just because we get to school on time DOESNT mean it isn’t a battle EVERY morning… we just start 3 HOURS earlier than most people

Being in a hostel for 11 months is NOT a cause for a child spinning for half hour when they get home from school, to line up toys, not know how to keep friends, hide or make excuses for simple things and have a speech and language delay of longer than the homelessness!

Finally….

Yes I have found all this out for myself because I was referred to FLW services 6 months ago and this is the first visit, and the CAF has been open since January… yet we have only had one (extremely low turnout) TAC meeting and didn’t include anyone other than people who have only met her 2 or 3 times and not for that long!

I went over the paed appointment and then the phone call and paperwork from the clinical director of paediatrics for our trust.

So she is coming back just under a week after Dinky gone back to school for some more patronising ideas, to fill out a star thing, and to (not so subtly) judge my parenting. Sounds like a hoot!

I almost wet myself laughing hen she said that the idea of her being involved is ‘early intervention’… I told her she is 6 months late for early, but if she had any bright ideas, then intervention is welcome!

 

Oh dear…

I am not taking any more crap.. I don’t want to hear all the talk… I want action!

By this tie next year I hope to get dinky a diagnosis, for her to have a statement and for her to be better supported in school!

Next week… the gloves are on!

 

pink-boxing-gloves

Autism support in the park and school shoe shopping!

This morning we went to the local adventure park which was only open to the members of the autism support group.

Interestingly, since I joined there and mentioned PDA, it seems some of the other children ‘fit the bill’ as it were. I am so glad that the families now have a name for the fact that their children just don’t seem ‘autistic enough’.

I took my folder and was asked a couple of questions and have been speaking to one parent in particular whose son is very much like Dinky. On Thursday it was the picnic, and they played really well together. The only problem is when they are like that, compared to the other kids that were there, it seemed like they were fine. Both myself and the other mum said that our kids seem fine. Which they do. In certain social situations our children can play the part of NT (nuerotypical), quite well, but manage to hold in their anxieties and then blow when they get home… If they even make it that far!

Dinky did very well today, she was being a bit dangerous, completely unintentionally, but I still had to run over to her numerous times in order to stop her injuring herself or any of the other kids. When the Lad came from the picnic, dinky was happy playing with him. We had some more of the Shira and Diego game, overall it was good though.

I wasn’t sure of the way to the bus stop as we got a cab in. Both Dinky and the other lad were on edge and being pickles. Dinky squirted him with water yet had a go at him for trying to do the same back. It was tit for tat the 10 minute walk.

We said goodbye and got the bus into town.

Now going shoe shopping for school is anybody’s idea of hell. To go with a child with additional needs who can go from 0-meltdown very quickly, it is definitely a nightmare! I really didn’t fancy having to make a special trip to town, and we had to get hay for the guinea pigs anyway, so I decided to go for it.

Well of course… it didn’t go down very well! The prospectus says the uniform is black shoes OR TRAINERS. Seeing as she went through so many school shoes in 2 terms at her old school, I am opting for trainers. Which is no easier!

It was busy and loud (and a mess), we were in sportsdirect. I used to work there, so the staff said hello on the way in. Dinky found a three tier shoe table and hid on the middle shelf. One of the guys I used to work with moaned because he had just sorted that particular shoe table, so I promised to fix it for him. I got Dinky 2 different styles to pick from and she didn’t like either! So she screamed and kicked and threw shoe boxes around.
I cant believe the effect the badge had (dinky has a badge which says ‘I am not naughty, I have special needs’)! The shoppers looked and grunted and tutted BUT! There were a few that said ‘aww poor kid, obviously not happy in this shop’. A new member of staff asked if there was anything she could do… Well, apart from getting ‘X’ to hurry up with the shoes there was nothing else she could do. More kicking screaming and trashing, then she picked some trainers. Still not calm, she was hyper at the till and went behind the till as she wanted to use the scanner! We paid and had another mini meltdown on the way out. Then another in the pet shop. Then we did a very quick shop around asda to get lunch bits. She was really good in asda as I brought her a book to read, plus I let her pick the lunch bits!

She was a menace in the cab, but when we got in she put Ice Age 4 on and was happy upside down watching it. (I don’t know why she likes to watch things upside down, but she does..) Then she decided to ask if I was going to hoover, I said I could do, or I could wait until she was in bed. She grabbed her ear defenders and followed the hoover around, watching the spinning bits, and having the air blowing in her face. At first I thought.. oh dear my child is odd! But I prefer Unique!

My very unique Dinky!

She is now watching SpongeBob squarepants upside down with Simba… (who managed to have a bath yesterday! Dinky even helped!)

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