I don’t think I have cried as much as I have this week in a long time. Dinky’s school have a lot to do with that with the whole Boxall Profile malarkey. I was in tears again today going over the last week and a half with the integrated services lady. She was a bit put out with my email that went a few levels above her head. She didn’t say as much, but when the email came up she said any issues I should go to her, and that I couldn’t have gone much higher with the higher up I went to.
I gave her this… I thought it was simpler.
Things I feel need to be discussed at the TAC FIRST OF ALL- I am aware that Dinky has not got a diagnosis YET. Question- If you think of a child with ADHD for example, if you took their diagnosis away would it stop the need and the difficulties associated with ADHD? No. WHEN Dinky gets a diagnosis, she won’t suddenly GROW need. The need is there already. Needs which have been recognised by those in the DWP who are more than well known for refusing DLA claims, Dinky’s was approved first time. Needs which have been recognised by short breaks activity providers. There seems to be a lot of incorrect assumptions.
For future reference… a parent of a child without a diagnosis CAN…
- Apply for and receive DLA (as long as the need is there)
- Join Autism groups in the area (as long as the parent believes the child has an ASD)
- (When in receipt of DLA) Access services from short breaks, even without DLA, some will still allow children to access services, as long as the need is there.
- Apply for statutory assessment for a statement of educational needs EVEN when the child is on target academically
No diagnosis means harder NOT impossible!
Not for the right reasons either, it is the attitude that a few words that sum up the difficulties of the child somehow trump the descriptions of the difficulties. The same descriptions that allow the medical professionals to put a name to them, is nothing short of ludicrous, especially given how long it can take to complete the diagnostic procedure!
As many of you are aware the Paediatrician agreed that Dinky met the criteria for PDA but didn’t know what it was. Fortunately after a phone conversation with clinical director of Paediatrics for trust Dinky has an appointment on the 7th of October with Dr PDA who I am assured is more up to date with the developments in the field of the autism spectrum.
The summer holidays
While the holidays were utterly exhausting and not without incident, it was the easiest time I have had with her for a long while, (if you discount the run up to back to school). We have thoroughly enjoyed visiting some great places, and spent a lot of time at sn group house. I have found that without school, she has thrived on the strategies that are described in the literature for PDA. She enjoyed her trips with the SN group, and we had great fun completing her holiday assignment of the diary.
I would like to point out that I do understand that the school have it toughest of everyone outside the home, when it comes to her challenging behaviour. As it is down to the school to try to get Dinky to try to do some school work, which, when her tolerance is low, is extremely difficult. Unfortunately as much as I would love to start this term afresh I believe some things from last term need to be addressed, some of which were supposed to be discussed at the last TAC however the head was called away, which somewhat halted the meeting abruptly.
- She has been subject to bullying about her wrist reins, (and the solution was not to tackle the name calling, it was to take off the wrist reins which ended up with her running across a road on the first day! I HAVE to put her on them on school property as she struggles more against it when we have left somewhere.) For the record I chose bullying over serious injury/ death!
- been illegally excluded for an afternoon,
- been restrained unnecessarily in my presence without my consent,
- she has been excluded from a school trip and only narrowly avoided missing out on the last one,
- Her IEP wasn’t fully implemented
None of this has been addressed reasonably, no apology has been made and I feel like I have been talking to a brick wall. Of course new term, new issues!
- Mornings (Dinky is finding it difficult lining up in the morning and has been in the bushes)
- School – home communication
- IEP is not being followed because, and I quote “I didn’t think she needed it” this was on the second day of term!
- Also on the second day I had to hold Dinky on the floor opposite the park while she rocked in my arms screaming “You have crossed the line young lady” over and over and over and over and over….
- Nurture and the boxall profile- I HAVE NEVER BEEN SO INSULTED for both of us!
I always have and always will love and cherish Dinky! I have always strived to give her the right upbringing and I refute ANY claim that this is not the case! Also the second paragraph shows a terrible attitude to the children who do have SEBD. Dinky doesn’t have SEBD, as long as someone is going to try and self-diagnose I think the starting point should be PDA/ASD, as this explains her difficulties so much better than SEBD! (Also as much as I thought Dinky enjoyed Nurture when she visited last term, from actually reading about its principles, it is not the right setting and the person I spoke to from parent partnership agrees)
- The boxall profile itself, however was very interesting as it does go to show that most of the things she struggles with are all PDA related.
- I don’t feel Dinky is being adequately supported for HER specific needs.
- Any updates on the SALT or Educational psychologist referrals
******************************************************************************************************************** It has been a really stressful few weeks and I will be glad when the TAC is over. Although I don’t make things easier for myself with seriously considering applying for a statutory assessment for Dinky.
I have also phoned the admissions team and requested a call back detailing what schools have space in our area. If the TAC goes badly I will pull her out ad into the nearest available school that will take her and accept her needs until we get a statement of education needs. Dinky may not seem to be overly struggling and she is bright. My main concern is her mental and emotional wellbeing if the school continue to treat her like a child with social, emotional and behavioural difficulties.
Her teacher is a complete pain in the backside! I wrote in her reading diary that she wouldn’t read, the muppet put “I will have a word”, Errrr… no you wont! Thankfully according to dinky she hasn’t. I am going to have a chat with the about homework.
Nothing is ever simple!