CAMHS appointment- dinky gets an ADHD diagnosis, CAMHS get a complaint!

I think the title already suggests that the appointment didn’t go very well…. Here is my draft complaint letter…

 

To whom it may concern,

 

I am writing to you regarding my daughter Dinky.

 

She was seen in CAMHS on Monday 13th April 2015. Her appointment was for 9 am.

Unfortunately what transpired during the appointment was appalling, and showed a complete lack of professionalism from Dr P’s colleague. She did not give her name at the start of the appointment, nor did she apologise for her poor time keeping, at 9am there should be no reason for a late clinic, they were 15 minutes late. actually at the start of MY daughters long awaited appointment the ADHD nurse spoke to someone else in the waiting area, telling them she is just ‘dealing with’ us and will be right with them. We obviously were not as important as her next patients, we’ve only been waiting for this appointment for nearly a year! We hadn’t even got through the door when she said that the ADHD had already been diagnosed so it shouldn’t take long. I wasn’t even aware this diagnosis had been made!

My daughter already has a diagnosis of autistic spectrum disorder from the CDC at our local hospital, and I would have expected that anyone dealing with her would know what that is, however there was no concession given for Dinky’s obvious distress at going into a new building with new people with out them even introducing themselves to her.

I was told to leave my distressed child with this person and go and speak to the consultant. Dr P was a consummate professional, he apologised for a letter not being sent to me for an important meeting, and was discussing medication for Dinky with me, when in comes this unknown person, she says she has spoken to Dinky about medication and she doesn’t want it! Well of course she doesn’t! Who gave her permission to talk to Dinky about medication in the first place? I know for certain it wasn’t me! Dinky has PDA as part of her ASD, which means you have to be careful how you approach things with her, ESPECIALLY anything that can be construed as a demand, like taking medication! I could see her getting worked up and she walked off, I thought the person was dealing with Dinky so that I can talk to the doctor, as the doctor explained to me, however this person was more interested in questioning why my daughter goes to a special school and why it is in the next county. I then try and find Dinky who has vacated the premises, and she refused to come back in. I was dealing with the situation which then turned into an uncontrolled violent breakdown from Dinky where her fight or flight response was triggered because of the direct and unwarranted interference by the person, and then just as I was calming the situation, this person felt she was best placed to tell my daughter off for her behaviour.

  1. She was the cause of this behaviour-late start, direct language, not introducing herself, discussing medication with a 7 year old autistic child, more direct language, the list goes on.
  2. Anyone with any knowledge about ASD or anxiety would know it is pointless talking to a child about the behaviour until they were calm
  3. I am Dinky’s mother! I know how to handle my child, I have been doing it on my own with no help from CAMHS for 7 years, and I will be doing it for a long time after their involvement! It was not her place to say anything. I know that once in the car I could discuss with dinky what went wrong, not berate her for having a basic human reaction to anxiety and fear!

The appointment was cut short, Dinky didn’t get her prescription for her newly diagnosed ADHD, the only outcome she recieved was high anxiety and complete overload.

Once Dinky was settled in her car seat and strapped in, we drove off, on the way back, once calm, Dinky appologised for hurting me. See, I know my daughter, she wasn’t intentionally hurting me back at CAMHS, she was in fight or flight, I know this because I am her mother and spend most of my time with her, especially when she was out of school for 11 months at was a t home full time.

I do not wish for this person to have ANY more contact with Dinky, and believe that she should be re-trained in how to talk to autistic children, and maybe clear any medication discussions with the parent or guardian before talking to a small child about it! If my daughter refuses to take the medication needed due to the ADHD nurse, I will have no choice but to take this matter further. 

 I also believe I am not only entiltled to a written apology from this person, but both myself and Dinky deserve one.

I look forward to your response within the timeframe set out by your complaints policy.

 

Yours sincerely

 

One extremely peeved mother!

 

Yes, so Dinky has ASD with an extra sprinkling of PDA, with a neurological side order of ADHD, SPD and sleep difficulties. But as one of my facebook PDA mum friends rightly said… I wouldn’t have her any other way. I love dinky no matter how many acronyms she has!

Dinky’s first two months in a SEN school has been a roller coaster!

if you haven’t followed our journey for long, or just joined us here at Dinky and me, you may not have read how we got here. Even the short version is long, so I will go for quick…

2 terms in first school (moved on head teachers recommendation- wrongly)

2.5 terms in second school (treated her as a naughty child)

11 months out of school (mostly spend abusing the unlimited entry to merlin attractions- chessington, legoland, sealife and London eye)

Coming up to 1 term in SEN school 

When it came to looking for a SEN school I was quite taken aback and there are so many myths and really poor advice from non-educational professionals. 

So on the one hand I was gutted that my little girl wasn’t going to see out her educational career in mainstream. 

On the other… I was pertrified she wouldn’t get into a SEN school, because I was constantly told 

  1. she wouldn’t meet the criteria for any schools. 
  2. She didn’t have BESD, 
  3. she didn’t have classic autism- ambitious about autism States: 

71% of children with autism are educated in mainstream schools and the remainder in specialist provision

 I was told the other 29% were those with associated learning difficulties or classic autism. 

    4. she didn’t seem to have a learning difficulty- but no one could assess due to her extreme demand avoidance. 

So that’s all the types of schools. 

As it turned out,  she didn’t need to have classic autism to go to an ASD/SLCN school, her level of autism and PDA was enough for her to go to a special school, and so was the fact she had made little to no progress in any area of her learning with the exception of reading. 

I was excited when I finally found a school that I thought could meet her needs. Finally a place that will understand her form of autism. 

To begin with it all went well, there was no pressure and Dinky enjoyed playing with all the adults that were happy to allow her to feel in control. She began to choose to do maths activities as they were set as games. 

Over the last few weeks we have had a mixture of brilliant or good days and  ‘positive handling notices’. Over the past two weeks especially there have been two incidents marked as serious. 

Instantly I panic. Whose fault is it? will she be kicked out? 

However it seems panicking is not nessessary, even though she picked up a blunt dinner knife and threatened two members of staff, she wasn’t excluded. I was shocked, not just that Dinky had picked up a knife (as she has NEVER done that before), but that it was seen as exactly what it was… A child who was scared, in fight or flight and who was not in control of her actions. 

Then earlier this week she headbutt two members of staff. Again this was not treated as an incident involving a naughty child. I felt that the staff could have prevented it, but they are still in trial and error mode. 

Then there are the great things. 

Dinky trying to do maths, planting potatoes, making friends- not because she is the rebel- but because the other kids like her! She gets certificates every Friday and is really starting to love school life. 

Someone said that Dinky is not the only one who seems happy with the school. It’s true, since she has been in this school I have been able to relax. I know she is safe and being looked after and I can rest. I can recover from meltdowns and the demand avoidance. I have time to go to meetings and do all the paperwork without trying to deal with Dinky aswell. 

Our weekends have become fun again. With the rest during the week I now have the energy to do thinfs like we used to.

We now have an after school routine. Dinky will come home, demand snacks, and watch a film. During the film she usually either rocks heavily against the back of the sofa of watch it completely upside down. 

She likes going on her doorway swing after dinner, and watches her iPad in her sensory den once she is ready for bed. 

We found out Dinky’s teacher is leaving next week. Normally I would be worried that this is yet another change for Dinky, however, changing teachers and schools regularly had become the norm, so the hard thing will be convincing her this school will last. 

When the teacher dropped the bombshell on the class, she apparently told him 

You can visit, not on weekends because the school is closed. Wednesday is a good day!

Later on when I went through the social story with her about it she said

Wednesday is a good day to visit.

Then she walked off. 

Today she has seemed ok with it all. 

I have been trying to sort out when Dinky’s statement is going to become an EHCP. According to our county council local offer, it is supposed to be this academic year. However the school sent out annual review paperwork. I phoned the SEN team and the caseworker had no idea what what going on. She said the changes were new and that she didn’t understand them, which is ridiculous! Parents are going on workshops to understand the changes and transition to EHCP but the SEN team doesn’t have a clue! Well, at least Dinky’s case worker didn’t, she had to ask someone else!

I had to tell her how it worked and she agreed with me. She said it was miscommunication, crossed wires, which led to the school not doing it as a transition meeting. 

So I talked to the school and found out that actually it was the SEN team that said they were too busy to do the transfer this year despite Dinky’s year group being one of the year groups to change this year. If she were to be left out, I wouldn’t have a clue when her statement would transfer to the new system. 

So now I have to start the paperwork my end in order to get the EHCP to be right. 

Dinky is going on her first proper school trip with the school next week! 

It sure has been a rollercoster these past two months, but I’m sure, at least for now, that I’ve made the right choice. 

SEN- the postcode lottery and transition to EHCP

It’s not just Autism services, but all special educational needs.

Recently there has been lots of talk about statutory assessments and the fact that so many parents requests have been refused, in one area ALL parent requests were denied by the LEA.

Where we live, it seems to be that refusal to assess is purely a way to extend the timescales for assessment.

When I went through the process with Dinky she was not only granted a statement of educational needs, but she has been awarded a substantial education package. 1:1 support at all times in an out of county independent special school placement, with daily OT, weekly SaLT, and weekly dog therapy, which requires a taxi and escort for 2 x 45 minute journeys a day.

It is baffling to think that at the start of the process they refused to assess and wrote

Dinky’s educational needs can currently continue to be met within the resources available through school action plus

This was written with no actual assessments to back up their decision, and was proven beyond a doubt to be completely untrue! I always shudder at the idea of someone being in the same predicament and believing that the LEA made an informed decision and the parent decides to leave it. My advice to anyone being refused a statutory assessment is to appeal. The latest figures show that of those who appealed 84% were granted a statutory assessment!

Luckily I was warned that our local authority tend to refuse to assess, and that I should appeal. True to what I was told a meeting with the LEA led to them rolling over and allowing the assessment to go ahead.

Now Dinky’s statement is nearly a year old, and as she is in year 2, her statement is one of the thousands that are going to be transferred over to EHCP this academic year.

I’ve known this for a while as I checked the dates for her year on the local offer website (which is a pain to navigate and not very informative in some areas).

This weekend in the post we recieved Dinky’s Annual Review date. (Put aside the fact she has only been in a placement for 2 months). I believed this AR was supposed to be a transition meeting for EHCP. So today I phoned Dinky’s caseworker from the SEN team at the LEA.

I told her that I’d recieved a date for AR from the school but as Dinky is in year 2, I was under the impression that this was supposed to be the year she transfers and that maybe I had got it wrong. (I’ve found that if you tell them they are wrong from the off- they get a tad touchy).

Well, I can only tell you that I wasn’t that reassured when, the caseworker said:

Oh, I don’t know how it works with annual review and transition, this is all new. I’ll speak to my collegue and get back to you… Hold on.

Now, just to clear up for those that don’t know, the education reforms came into effect 1st September 2014, which is over 6 months ago and as a pathfinder county it’s not like they were unaware these changes were coming in. So this lack of knowledge about how it works from those inside the LEA is astounding. Especially when parents are going to training from the local parent carer forum and so far seem to be more knowledgable than the people who are supposed to be helping our children et the support they need in this process. (Although writing that doesn’t seem much different to doctors not knowing what PDA is or diagnosticians saying a child can’t be autistic because they happened to give momentary eye contact!)

She got back on the phone and said I was right (should have got that in writing!), that this annual review is supposed to be a transition meeting and that the school need to download the parent carer booklet and send it to me to fill in for the review date so that they can transfer the statement to EHCP.

She then said that no one fom the county will attend the meeting. However she will get someone to tell the school that this review will be transition, and make sure the process is adhered to.

I asked if I could download the booklet, and was told that that would probably be a good idea!

So it seems that the SEN system is still in crisis. The main issue here is that the people this affects are one of the most vulnerable groups of people in our society- children with SEND. Furthermore, already stressed out parents dealing with being a carer of a child with special needs, are having to become the experts and do all the work in order to make sure their children get the support they need.

The posts have dried up- my apologies

I realise that Dinky and me has had more followers lately, welcome! 

I have to start by apologising for the lack of posts in the last few months. 

It seems that I am able to just about pull myself through very stressful times fighting all guns balzing, yet when the fighting is over I become exhausted and drive myself bonkers with the need to do what I do generally do on a larger scale, and that is to assess how I did. 

Well, I can tell you that I have successfully burnt some bridges that might have been helpful- thanks to my inability to understand the need to do things or say things behind the backs of others and not directly to their faces, and also my inability to not anger-email (a bit like drunk dialling) when having my own mini meltdowns due to the stress being too much for me to handle. To be honest the reaction says more about them then it does about me. 

I have also had some things occur that have knocked me sideways and I have seen an increase in my PTSD symptoms of late. Which doesn’t help. 

I seem to be flitting between wanting to go back to not really socialising (possibly part of the PTSD/anxiety as well as finding myself being excluded from the local generic autism groups anyway) to wanting to get the war paint on  and getting PDA awareness up in my area, especially with the Muppet paediatrician and the weekly emergence of  local parents identifying with the PDA profile in regards to their children. 

Dinky is doing well. She is obviously struggling with the fact that she has more demands now that she is at school, which unfortunately meant that the dog had to go as I don’t  have  anyone that can walk her in the evenings when Dinky won’t leave the house. However she seems really happy to go to school and is actually taking part a lot more than she was in mainstream. She has struggled the last few days at school, the link book says she has been reluctant to join in often refusing to attempt any lessons, however, she has enjoyed cooking and swimming. 

Today she asked what we were doing, as the timetable was blank, so I gave her choices, she chose films, rough sensory play, and her 2DS, over going out somewhere. We had a demand free day which ended with a meltdown free bath time to bedtime transition! 

Tomorrow cineworld cinemas are holding their autism friendly screenings, so I shall be taking Dinky to that. Then she is back at school again. 

I hope her costume comes in time for world book day next week. She is going as her favourite marvel avenger… Hulk. (Which always makes me laugh as my dad refers to her meltdowns as her turning into shehulk, but not going green, which would be more helpful! I definitely agree!)