For those that do not follow the Facebook page, I had decided to take a few days away as things had become too overwhelming for me.
As those who regularly read this blog (thank you), you will know that there is always SOMETHING going on here. Especially as I have been battling health, education and social care all in one go! This week was no different.
Dinky has been at home for a week and a half now, which, was due to the school having changed her room with less than 24 hours notice, while giving me this notice the Senco also told me that the Tuesday cover was changing too. All this on top of the fact she was now part time and was no longer in Nurture. As much as I hated the idea of her being in nurture, they had finally got the hang of the PDA strategies and were at least trying to understand her, and SHE liked it. Oh and she had a new 1:1 who has absolutely NO training whatsoever, and is a parent of a child who has recently left the school.
These changes were brought up three days after half term, after a meeting with the school and the social communication team, where the social communication team said that Dinky does not cope well with change at all. The school just do not listen or care if it does not meet their own agenda… I’m sure the school have PDA/ODD.
To add insult to absolute injury… the school put banners up on the roundabout close to our house saying they are a ‘GOOD’ school. Hmmm, I do not think they told Ofsted how they have treated Dinky or the other lad in the school who has ust had his diagnosis changed from Asperger’s to PDA.
So I took Dinky out of school on the Thursday.
Friday: I emailed PALS (Patient advice and liaison service)/ service experience team for our NHS trust. I said that I was not happy that the first referral to the paediatrician for an autism/PDA assessment was done 12 months ago, yet despite the provisional diagnosis being made, it seems there are no plans to do the actual assessment any time soon.
On the Sunday my dad took Dinky to go watch the autism friendly showing of the Lego movie, in that time I went to the roundabout, cut all the cable ties and returned the banners, in tact, to the school just outside the delivery door! I didn’t tell them it was me and I would not deny it if it was ever asked of me. I also had plans to add my own quotes to the roundabout such as “We can fix her” – Headteacher’s opinion of a child undergoing autism assessment, and “too time consuming”- says a teacher about meeting a child’s needs, if they dared to put them back up. Regrettably they opted not to put them up again!
Monday: I got a call from the paediatrician. He asked why I was making a complaint. I told him it wasn’t about him and I appreciate his input, however I was hoping that we might have got a little further by now considering he thought it was pretty obvious that Dinky has PDA. He gave the ‘there is a waiting list for the actual assessment, and I thought that CAMHS were going to take this case on which is why I didn’t move it on, but that has been done now’ spiel. I explained that that is not helpful to us. As much as everyone keeps telling me her needs should be met as it is supposed to be needs based rather than diagnosis based intervention that we can wait, we cant because that is just not the case! It definitely hasn’t been the case for us, and especially not where the school is concerned! instead the school have said attachment (to which he let out a sigh and said “PFFT”). I thanked him for his provisional diagnosis and said it just isn’t enough, not when integrated services went into our TAC meeting in November shortly after it was made and said “but it is ONLY provisional” and the school had said “It COULD still change”. He again stood by his provisional diagnosis and said he understood my frustration.
Tuesday: I got a call from the social worker. She said she didn’t know if I could “Just take her out like that”. To which I replied “WATCH ME”!!! I told her I had, had enough of them not taking Dinky’s needs seriously. She said she understood but it made her job slightly more difficult as she now has to find out what this does in terms of her assessment. I’m guessing this will be a ‘child missing from education’ issue, I didn’t ask. I told her how frustrated I was with everything, how many professionals claimed to want to help while none ACTUALLY helped in a way that was actually helpful! As much as the SN group is great and Dinky LOVES it, it cant really be classed as respite as by the time I get home I have about 1 hour before I have to collect her, and that is only once a month! I didn’t mention the new 1:1 we have fortnightly on a sunday for 4 hours as actually it is much more expensive, although with her being picked up from the house I will actually get 3.5 hours (she has to do paperwork before she goes).
So she is going to contact the school and education to ‘see where we stand’.
Wednesday: I got a call from the head paediatrician at the CDC. She said Dinky was now on stage 2 of the 3 stage autism assessment and that should take place December 2014/January 2015. She said it in a kind of non interested monotone, so it took a few more seconds than normal to sink in! 9/10 MONTHS!!! From NOW??? I went through how much Dinky was struggling with education and how to get any actual assistance we really needed to complete the assessment much sooner! I was completely taken aback by her blasé attitude. Nearly 2 years for an ASD assessment is disgusting! She said that the school should be going on need and not diagnosis, I told her that was difficult when the school decided to make up their own diagnosis and handle her in the worst way possible. She said I should actually be complaining to CAMHS as they were the ones who turned her down. I said that CAMHS have said they are not an ASD assessment clinic, that is what the CDC do for primary aged children, and considering that PDA IS one of the ASD’s it comes under their remit at CDC! She said “Actually it is a bit more than that, and needs to be assessed by a psychologist.” To which I replied that she has been seen by the educational psychologist, and as a psychologist and as the letter from CAMHS recommended her involvement in the assessment of Dinky, that they actually use that to help! She mumbled something or another. I said that we need a firm diagnosis and the hold ups we have encountered so far are not Dinky’s fault, to which she had no choice but to agree. I told her about me taking Dinky out of school and what she was like after being there for the 3.5 hours, she said “Well she sounds autistic!” (she also mentioned giving Dinky’s file the once over to see why it hasn’t moved forward faster), and said she shall ‘see what she can do about bringing it forward’. We also discussed the fact that the social communication SaLT needed to go into school to assess during structured and unstructured time, to which I replied “It wouldn’t make much difference to doing it at home considering that she was moved to a tiny little room with just enough space for a table and two chairs with a 1:1!”. She said that separating her from everyone was not the answer!
Only after the call did I realise that the clinical director of paediatrics for our trust said that she had already done that! So why she would still only be seen at the very end of this year/the very beginning of next year is beyond me!
Thursday: I phone the SEN team to find out the status of the statutory process, only to be told that they are STILL waiting for the OT report. I took the opportunity to tell them that I had taken Dinky out of her school until suitable provision was found! She didn’t seem to happy, but I explained why, and it is up to them to deal with it which ever way they want.
I then got a call from the lovely lady at PALS who asked if the CDC got back to me. I didn’t mean to mention it, but I said that the education thing will get better once we have a statement, however that could get delayed as they still haven’t received the OT report. To which she said “I’m on it”
Friday: I get a call from OT, report is ready to go to SEN team and I ask for a copy…
The purpose of the Screening Clinic and role of Occupational Therapy was discussed with Dinky’s Mother and consent gained.
- Dinky tends to eat everything
- Dinky’s reaction to sounds
The following information was gained through discussion with Dinky’s Mum.
The focus of today’s assessment was to explore Dinky’s reaction to sensory experiences and understand how these impacted on her ability to function and participate in activities. Each sensory system was therefore discussed in turn.
Touch: Dinky enjoys touching and feeling “squidgy” textures and doesn’t mind getting her hands messy. She will often explore objects in shops and it is difficult to bring her away from textures she enjoys feeling. She has a box of ‘feely toys’ at home but does not have access to anything similar at school.
Dinky has difficulty with hair cutting and washing and a written handout was provided today providing strategies to help with these activities.
Movement: Dinky will spin continuously, sometimes for up to 30 – 40 minutes. Her Mum feels she does this to calm down or when she is anxious. She seeks movement and becomes distressed when she is not able to move and spin about.
Noise: Dinky finds coping with loud noise difficult. She has access to ear defenders, and will often make noise in order to overpower the noise she doesn’t like. Dinky finds it difficult to cope with swimming pools and her Mum is looking into accessing a quieter pool.
Vision: Dinky does not like bright lights and can become distressed if she cannot wear her sunglasses in bright sunlight.
Smell: Dinky loves smelling food and objects and will often smell food before eating it.
Dressing: Dinky finds fastenings difficult but can otherwise dress independently.
Eating and drinking: Dinky is developing her cutlery skills.
Washing: Dinky loves the water and is developing her washing skills. She is able to wash her hands independently after using the toilet.
Toileting skills: Dinky is able to use the toilet independently.
Sleeping: Dinky finds it difficult to ‘wind down’ at the end of the day and go to sleep. She now takes melatonin in order to help her get to sleep which is working well. However, Dinky will often wake up during the night and has difficulty getting back to sleep.
Other information: Dinky is currently going through the statementing process as she is not coping within a mainstream class.
RECOMMENDATIONS / ACTIONS:
Dinky’s Mum reported significant sensory difficulties today that are impacting on her ability to participate in activities both at home and school. Dinky presents with a need for strong sensory input. It is therefore recommended that Dinky have a school visit by the occupational therapy in order to further assess her sensory needs and see if there are ways that Dinky can access the sensory experiences she needs within the school environment.
Please do not hesitate to contact me if you would like to discuss any aspect of this report.
To be completely honest, it is not exactly helpful, nor is the fact that they suggest se is assessed in school. Like I said to the CDC, even if she was at school her sensory needs wouldn’t be tested with a 1:1 in a tiny box room!
So that has been my battle with the ‘Big 3′.
other than that, Dinky has been much calmer, although not going to school doesn’t magically cure PDA.
We have played with lots of lego, watched films, Dinky has done some writing, some maths, we have been to London eye, London aquarium and dinky tried the London dungeons. She has also been to a different SN club which is held at our local park, been to a workshop with me (in which she was showing more of her PDA skills to the SN group leader- to the amusement of all in the room), been out with my dad and the new 1:1.
But the biggest news is… Dinky lost her first tooth!
As a parent of only Dinky, I did not know how the whole tooth loss and tooth fairy thing would go down for any child, and how that might be different for Dinky. She has been very much preoccupied with the gap, the letter and the certificate from the tooth fairy were disregarded, although she has kept the coin close as she knows she can use the coin to buy something. Other than that, she has been rather disinterested.
I wont say I will blog as regularly as Dinky is now at home, which means if I do not want a trashed house, going out a lot. (So glad I brought those Merlin annual passes!).