Respite, schools and OT report

Today was Dinky’s first respite from the 9 hours a week social services have granted her.

She happily went off to the special needs clubhouse with her 1:1 and left me tired and ready to get on to phoning schools.

Well, two schools. I spent a lot of time yesterday morning in between Dinky’s acrobatics and constant need for me to get something for her, going through the list of ‘approved out of county schools’, this includes non maintained in our county. I know not every school is on the list, which is why they make a fuss of them being ‘approved’ aka cheap!

It is a hard thing accepting your child, especially a young child like Dinky, going out of county for her education.

I went through the list of schools, I immediately discounted SLD, MLD, deaf, blind, delicate, epilepsy, and physical. Which left me with 11 autism schools and 44 EBD schools.

 55 schools… I automatically crossed out anything over an hour away… there is no way dinky would be happy with a long drive in the morning. Then I went through the EBD schools to find out how many take them as young as 6… and being a girl, it seems EBD is also a boy thing! 

I was left with Helen Allison National autistic school in Kent- which is an hour away, an ASD school in London- also an hour, and an EBD school 45 minutes away. On looking at the ASD school in London they only cater for more severely autistic children.

Today I phoned both schools. I had already spoken to someone from Helen Allison at the Autism show in London and knew they were happy to take on a child with PDA. Unfortunately they said they don’t have any appointments to view until November! I explained to the lovely person on the phone that Dinky is out of school and that we have been searching for a school and this is the only autism school within an hour from us that understand PDA and can provide the correct support. I explained what happened at the old school and she said she will speak to the person in charge of viewings and see if they can squeeze us in, she promised to phone me back.

I phoned the EBD school and someone was going to call me back.

So I did some housework, then had a bath in peace (result!), but had to jump out as the phone rang, it was Helen Allison school, apparently a parent backed out for Thursday so I can go view it then! Brilliant!

The EBD school phoned back, I asked them if they cater for children with PDA, the response from the head teacher was ‘what is PDA?’. I said it was an autism spectrum condition, the response was ‘oh, not heard of that’. That was the end of that phone call!

I then got the OT report via email,

 

BACKGROUND INFORMATION

 

Dinky was referred to the Paediatric Occupational Therapy service by Dr A ( Locum Consultant Community Paediatrician) on November 18th 2013 due to concerns regarding sensory issues and poor handwriting. She was seen within an OT screening clinic in February 2014, when the need for an assessment at school was identified. At this time Dinky’s Mother was given advice regarding the implementation of sensory strategies (namely calming activities). Dinky was removed from school and therefore received an Occupational Therapy review by means of a home visit on the 17th June 2014.

Dinky has recently been diagnosed with Autistic Spectrum Disorder, Pathological Demand Avoidance (PDA).

 

CURRENT LEVEL OF FUNCTION

 

COMMUNICATION

 

Dinky is a chatty, physically active 6 year old girl who is reported as wanting constant attention and being in control of any situation by teachers at school.

Dinky’s concentration span is short and her use of language reflects her thought processing, which tend to move from one topic to another in quick succession.

Dinky finds it difficult to socially interact with other children in an appropriate way. She experiences difficulties with the processing of auditory sensory information (i.e. sounds) and tends to be overly sensitive to loud or unexpected noises. Dinky’s issues with sound processing are likely to affect her ability to register, process and follow verbal instructions within the classroom and have an impact upon her ability to concentrate and remain calm during noisy times of the school day (e.g. during play times, assemblies or times of transition).

 

BEHAVIOUR AND EMOTIONS

 

Dinky’s main function issue is that of her inability to stay on any given task for more than a few minutes at a time. She is easily distracted (even within the quiet environment of her own home). She prefers tasks to be on her terms and frequently reacts in a negative way if she cannot do things her way. Dinky responds negatively to having boundaries set.

Dinky is a very physically active child, who seeks out movement experiences at a higher rate than other children might do. Her apparent issues with the processing of visual, oral motor, touch, vestibular and auditory sensations have an impact upon her activity levels, concentration ability and regulation (control) of her emotions.

 

LEARNING AND DEVELOPMENT

 

Dinky’s difficulties with attention control, social interaction and challenging behaviour affect her ability to participate in learning activities within a large group setting. She appears to enjoy a wide range of play based activities, but is only able to attend on a task for a few minutes at a time. Dinky holds a pencil in a right handed dynamic (mature) pencil grasp and demonstrates good motor control. However her participation in fine motor tasks is greatly affected by her interest level and ability to concentrate. She is able to snip the edges of a piece of paper using scissors.

Dinky requires a learning environment that caters for her sensory processing issues and can provide regular opportunities for movement based experiences throughout her day. Any learning task will need to be short in nature and encourage Dinky’s interest. Implementation of a sensory diet and a sensory based learning approach would be of great benefit to her at school.

 

 

KEEPING HEALTHY

 

Dinky will require one to one supervision at school, particularly during those physical activities (e.g. PE or day trips) where her danger awareness is likely to be poor. Dinky will find noisy or chaotic times of the day more difficult to manage (including transition times) and will need additional strategies in place at these times to aid her ability to cope.

 

Dinky will require an innovative learning approach in order to encourage her participation and promote her level of concentration.

 

 

SUMMARY OF CURRENT LEVEL OF FUNCTION

 

Dinky presents as a very physically active six year old girl with a range of developmental issues, the most significant of which are her inabilities to concentrate for more than a few minutes at a time, her distractibility, sensory processing issues, social interaction difficulties and refusal to engage in certain activities or comply with boundaries that have been set. Despite her issues with concentration she has developed some age appropriate fine motor skills, but her participation is largely affected by the above difficulties.

 

 

INFORMATION RELATED TO THE FAMILY

 

Dinky’s developmental difficulties and removal from school have had an enormous affect upon family life. Dinky is a challenging child to parent and she requires continual one to one attention in order to ensure her safety, particularly when away from her home environment.

Dinky requires access to outdoor play areas and physical activities on a regular basis which is challenging for the family to provide within their current accommodation.

 

 

RESOURCES

 

Dinky’s family will require ongoing practical and emotional support in order to enable them to care for her in an appropriate way. The physical environment at home will need to be reviewed on a regular basis in order to ensure Dinky’s safety; sensory and developmental needs are being met. Dinky would benefit from the provision of suitable sensory play items and resources at home.

 

 

PROVISION AND RESPONSIBILITIES

 

Dinky will require a series of school visits, to take place during the first half term of her starting at school, in order to assess her sensory processing issues within the school environment and draw up a relevant sensory based programme.

 

Subsequently Dinky will require termly school visits in order to review her sensory based programme and provide a programme of fine motor activities. Both of these programmes are to be carried out by competent, suitably trained staff on a daily basis within the school environment. These activities should be integrated into the wider curriculum in order to promote function and participation.

 

Dinky will require ongoing monitoring of her sensory processing issues and fine motor skill development in relation to aiding her attention and participation within the classroom and promoting independence in self-care and play activities. They will be assessed as least termly by an occupational therapist experienced in working with children with sensory processing and developmental difficulties.

 

Within the educational setting, Dinky will require access to working within a small group and on a 1:1 basis in order to access the curriculum and reach her potential.

 

Dinky will also need to have access to sensory play equipment and resources, which should include access to a sensory play area and a safe outdoor play area.

 

Dinky will require full time one to one support by a teaching assistant who is suitably trained in managing children with complex developmental difficulties.

 

The above recommendations regarding Occupational Therapy interventions will need to be reviewed in line with any ongoing changes relating to the medical management of Dinky’s developmental needs.

 

Occupational Therapist

 

 

So all in all an accurate report. I phoned the OT and asked her to fax this report to the SEN team. She is already on it!

So I phoned the SEN team and let them know it was done.

All these phone calls and I had no interruptions, no shouting, no swinging off me, no jumping all over the sofa, no winding up the dog, no messing about with the guinea pigs and no anything else that normally happens when I am trying to converse with another human being other than Dinky!

It was quite a change!

 

I went to get a new friend of mine’s son, to take him to soft play special needs evening and was meeting Dinky there, by all accounts she had a good day.

 

 

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Diagnostic report and The SEN team manager!

I got Dinky’s diagnostic report today!

I first read it on the bus on the way back from picking it up at the CDC.
A few things got my attention but dinky really got the bulk of my attention. I did notice that the paediatrician has referred dinky to CAMHS… This is the 6th time!
I also noticed that she seems to have gone back on the idea that PDA IS an autism spectrum condition as her diagnosis list from the report are as follows

1. Autistic spectrum Disorder
2. Pathological demand avoidance
3. Significant hyperactivity, impulsivity, attention and concentration difficulties
4. Sensory integration difficulties
5. Sleep difficulties

I didn’t re read the report until after this happened…..

Now, I have been trying to speak to the SEN team manager for 2 months!

Tonight he phoned me!

We discussed the diagnosis and how that changes the BESD on her statement. He said they had received the diagnostic report but he had to read it yet.
He said now that the diagnosis has been formalised he now agrees BESD wouldn’t be good.
He said they have sent out a profile on the DPS (dynamic placement scheme). I spoke to the other contact I had in the sen team earlier in the week and she described it to me as they send out the profile with no name and address with a description of need to non maintained and out of county special schools on a list.
They then contact the sen team and ask for more info and are then sent the proposed statement.
So I explained that this actually would be pointless given the fact that the very core of the statement is wrong, and not just that, the strategies used by teachers with experience of BESD are completely counter productive, as I have pointed out previously by Dinky’s 9 exclusions in 10 school weeks 8 of which came from nurture- a mini EBD unit.
He actually agreed. He tried to say Dinky still had behaviour issues, but I said that these are best defined by her social communication difficulty and that just by looking at her diagnosis letter they can see that she hadn’t been diagnosed with a behaviour disorder, she has been diagnosed with a social communication disorder. I completely get that Dinky doesn’t fit into their predetermined boxes but the right strategies have to be used NOW.

We discussed placements close to home and why they would not be suitable. He is going to reissue the DPS on the amended statement when he gets round to it on Tuesday. As the one they sent out last week had provisional diagnosis of PDA and didn’t mention autism, I said PDA IS AUTISM. Either way autistic spectrum disorder is on her diagnosis alongside PDA.

He is going to contact me as soon as schools have expressed interest in Dinky’s case or before hand as he wants to have a meeting with ‘relevant professionals’ so I have invited him to the child in need meeting that is being set up soon(ish).
I did say that this needs to be done ASAP because schools will be closing soon and I want to go into the summer holidays knowing which school Dinky will be going to considering her statement should have been completed by may 30th!

After this call and getting dinky sorted, I re read Dinky’s diagnostic report.

They really caught how deep Dinky’s social communication difficulties are, at some points I was shocked. I could see what they were saying, but I never assumed it was that bad as I was predominantly focusing on the PDA aspects.

My parenting was praised as was my knowledge of dinky.

It seems if she didn’t have the extreme demand avoidance then she would have been given an ASD diagnosis as she has some quite deep social communication difficulties and repetitive and restrictive behaviour and interests.

They say she may need a high level of support irrespective of the educational setting.

They talk about her possible ADHD and many reports they have seen discuss her ADHD traits, they also noticed many attention difficulties.

Now it is hitting me that Dinky’s autism was far more complex then even I anticipated.
It is one thing to fight for your child’s needs to be recognised, it is another to see they are worse than you even thought they were.

I am her warrior

I think recently I have come to realise just how little I am my own person. Since I found out about PDA I have become what Dinky needs me to be.

I am her advocate
I am her stability
I am her comfort blanket
I am her warrior

I am also her plaything
I am her pawn

I am no longer me.

While I don’t resent Dinky for this, as I still feel an overwhelming love and pride in who she is and PDA is a part of her very fabric of being, I do feel a little lost.

Dinky is 6 and she needs me to be all the things I am for her. Right now she needs a warrior, a battle ready warrior willing to negotiate the battlefield that is education Heath and social care.

We have won one battle…. Dinky has a diagnosis of PDA, and we needed that in order to sort everything else. But the battle with health isn’t over… We have the ADHD question mark now… So I have to figure it put for myself while trying to get the statement for education finalised…
I spoke to the SEN team yesterday, they have Dinky’s diagnosis letter, but they want the full diagnostic report before they will remove BESD from her statement. I don’t see why. The social communication team and the ed psych said she had PDA, and have PDA strategies… The school were the ones who said BESD, so I don’t see why they need the full report seeing as the diagnosis is confirmation in itself. She hasn’t been diagnosed with a BESD condition- RAD, ODD ect. She has been diagnosed with a social communication disorder.
So more waiting, more chasing, more sword swinging!

Meanwhile trying to deal with muppet social worker who hasn’t got a clue.
The poor SN group leader was called another name by the social worker because she doesn’t listen.
She also said dinky STILL has BESD as there is cross over… NO THERE ISNT!

Some people say that autism has all of those issues. These people do not know the actual medical/education definition of BESD.

BESD is described as

Early childhood experiences can have a major impact on later development, with the lack of a positive attachment to an adult being seen as particularly detrimental to some children. Whilst social circumstances can also impact on development, parents are the biggest influence on a child’s development. Children who experience family difficulties, including parental conflict, separation, neglect, indifference or erratic discipline, are more likely to develop BESD.

From the priory group

Eileen Sheerin offers six top tips for managing young people with behavioural, emotional and social difficulties without confrontation

“When we refer to behavioural, emotional and social difficulties (BESD), what exactly do we mean? BESD is when a young person cannot manage her emotions, and is often anxious, scared and misunderstood. The young person may have had early life trauma, been a victim of abuse or even suffered the effects of alcohol or drugs before she was born.”

From sen magazine

This is NOT AUTISM

Autism is a neurological condition.

The behaviour difficulties associated with BESD are completely different to the challenging behaviour seen in autism. The violence seen in BESD students is different, it is an anger issue which can be worked on- I should know, I was a very angry child and adolescent, I overcame my anger issues. Autism can be accompanied by violent meltdowns, these are NOT the same as anger issues. Meltdowns arise when an autistic person has reached the limits of what they can withstand.
The social difficulties are not the same as they are with a child with BESD, I do not understand the social difficulties in children with BESD, but I doubt their social difficulties come from a lack of ability to understand the social rules, but more likely to be disregard for them- more ‘I don’t care’ than ‘I don’t understand’. It is a big difference.
I haven’t a clue on the emotional side, but I’m guessing the difference again is in understanding. With BESD it would be not being able to control their emotions, whereas with autism it is a lack of understanding.

More than anything autism is a communication issue. I’m not talking about speech. I’m talking about actual communication in any form.

This is not BESD.

Until this is sorted I’m never going to be my own person. I’m going to be carrying around the armour swinging the sword in both defence and attack trying to plow a path for dinky so that she can be free to learn, grow and have the support where it is needed.

I am her warrior… That is what dinky needs me to be, and that I shall be.

Poor dinky has not had a good couple of days!

Yesterday we went out for my dad’s birthday treat. I asked him for months what he wanted for his birthday in the end he picked a day out. Which would be fine, if he didn’t induce meltdowns! So I was apprehensive and asked him if he was 100% sure he didn’t want an ‘I O U one arsenal football shirt when it comes out’? Apparently not… Great.

It wasn’t long before I was right to be apprehensive, we hadn’t even entered London and I was already hissing “just leave her be”.
We went to the arsenal shop and she just was not happy, my dad had told her to put her ear defenders on for the tube and instantly she refused, meaning she had all that sensory input which never made sense before a few months ago, but now I understand a bit more, and it was unleashed on the way to there.
She was still fragile… Cue dad, while I was trying to pay for his gift Dinky is in a clothing stand screaming, I turn back round and dad is trying to carry her out of the shop because he is embarrassed, so she punches him a few times… Once I’m done, I see Dinky has gone back to the clothing stand and is trying to self regulate which is brilliant, but my dad is still barking orders, I calm Dinky a bit, but she has decided she won’t talk to him and I have to carry her because her legs don’t work and I am bossy.
By the time we get back on the tube to go to the aquarium, Dinky has calmed a little and had her iPad out.
We went down to mc Donald’s, only to find they were shut for 1 day, typically on the one day we decide to go down there! Another physical meltdown and refusal to walk.
Once I’d calmed Dinky down we decided to go for hot dogs and ice cream.
I had a voicemail. I listened to it, it was the social worker.

Now, I know what I said in the other post about her, but seeing as we can’t change social worker, it would be stupid to the highest level to turn down support when offered, especially from social services as generally they are bloody useless in this area. So I am giving her one more chance.

She said they have (yet again) changed their minds about how they are going to provide the support for the next 12 weeks. I’m not even sure of how it works as I called her outside the aquarium, and I can’t concentrate with so much noise. The gist of it is that it is a p card, like a debit card that they will pay in the allowance weekly. She is going to meet us at the special needs club house and explain it in more detail. At least that way Dinky will be in the sandpit and therefore she won’t be overly fussed by us having a conversation.

This doesn’t mean I have forgiven her for not listening! I will have the diagnosis letter and some leaflets on PDA and autism for her to read before she sees us again, the emphasis will be on her knowing I know best where dinky is concerned unless the SW is sufficiently trained in ASD-PDA to be able to state otherwise!

Dad and Dinky enjoyed the aquarium. Dinky had a few issues with a class of children screeching and shouting for what seemed to be no good reason, as fish are not THAT exciting!
Dinky showed my dad all her favourite bits, as we have been to the aquarium quite a few times. She wasn’t happy that we didn’t do the London eye or park that we usually do, but I had explained to her leading up to yesterday that we were not going to be doing that, and that next time I will make sure she has her normal trip. I think she found it a bit easier as it wasn’t the usual trip with me, as her grandad was there.

I was supposed to be going out and celebrating my PDA victory having the diagnosis for Dinky and therefore one less battle now!
My dad was going to have dinky, but by the time we got back she had just had enough. My dad didn’t help and set her off again with so many direct demands.
Meltdown ensued, dinky kicked my dad right in the face after he tried to grab hold of her. He lost his temper and growled at her.
I couldn’t go out then. Dinky wouldn’t get ready for bed, let alone go up to her room.
I had also been a little annoyed and no longer in the mood to go.

So we watched England lose at home. Which was horrible, but expected. Luis Suarez was just too much for the England defence.

Today, well, today has been one of ‘those’ days.

Dinky didn’t wake me until 5.30am, but by the state of my living room, she had been up for a while before that!
She told me that our dog had chewed through her lead… Great!
Just another thing added to the list of broken or chewed things this week…

So we got ready and went to town. Dinky has not been wearing her wrist reins lately, as she point blank refuses to put them on,and even if I wrestle to get them on, she just takes them off.

In town dinky needed to have her photo taken for her bus pass and was not happy. So I took her to the toy shop to have a look around. We then went to go get a few things I needed and dinky started kicking up a stink. She said she needed the toilet and would wet herself if we didn’t leave. So I dropped everything and we left. She then refused to walk and when she did she wasn’t looking where she was going and was bumping into people.
One of the things that came out of the occupational therapy appointment a few months back was Dinky being under responsive to touch at times. I know better than to give her any demands and even talking to her in this state is not even worth it, although my sheer frustration and sleep deprivation meant that I unfortunately, wasn’t able to stop myself telling her I wasn’t too impressed about not being able to just get the things I needed. Which obviously didn’t help matters, but didn’t make them worse as she wasn’t listening and couldn’t say what I said… Off into Dinky’s world- which brings me back to the under responsive touch, at this point I had to almost push her to get her to go in the right direction as talking or normal touch wouldn’t register.
She went to the toilet and then refused to wash her hands as the water was too hot.

When we went through the gardens dinky was still not listening, and wasn’t looking where she was going, she almost took out 2 elderly people and I had to literally give her a shove in one direction and again in the other, she then stopped right in front of me and to stop myself tripping over her, I had to shove her again, annoyed and frustrated I said it doesn’t help if she stops right in front of me.
Then someone got my attention.

He said “excuse me, I don’t mean to tell you how to raise your kid… BUT…. You shouldn’t be pushing your kid around like that, if social services see that, they will take the kid away.”

Dinky had started to walk off, so out of ear shot I told him to fuck off and keep his nose out!

He kept on about how it isn’t nice and that I should let her walk on her own. Sure Dinky doesn’t look autistic but she had a hat on saying ‘Auty not naughty”. I said I was guiding her as she wasn’t looking where she was going and I’m sure she would have done more damage to the elderly ladies than I did by giving her a gentle push out of the way.

Looking back I can see it may be considered a bit heavy handed, but Dinky is not a typical child. If I had said ‘look out’ or ‘watch where you are going’ Dinky would have just got more annoyed, looked at the floor or around her, and still have taken them out!

He said “everyone is watching how you are treating that child”
Dinky then piped up “shut up! Leave mummy ALONE!”
I shouted (not my best moment) “I’m guiding my autistic daughter… I hope that’s ok with you!” (Even now I’m cringing!)
Dinky then said “mummy helps me” which melted me and calmed me almost instantly.

As I walked off with her (and she was now back to paying attention to walking) I heard someone say to him “that child’s hat says auty not naughty, which means she is autistic”.

I then took dinky to the bus stop and we got the bus home. I couldn’t help it. I cried. I know I didn’t handle the situation well, and I have been trying to get support, it is coming, but it has taken so long.

Dinky then fell asleep on the bus! My child who rarely sleeps at night fell asleep on the bus!!!

Dinky was bouncing around at home and then we went for a dog walk with another mum from the local autism group. We set the world to rights, and then went to an active club for children with disabilities.

I did say to them that she has PDA, but they didn’t understand it, not even the bit where I said “please don’t give her direct demands”
So they blew a whistle near her and told her to line up. Yes, blooming marvellous! I then had to try and calm her down as she was destroying the circuit they had set up. She found somewhere to hide, but it was part of the circuit and she was in the way. Someone gave her MORE direct instructions, so she got physical and I had to remove her. I was then punched and slapped by Dinky as I had to hold onto her. I managed to calm her down and she played with my phone for a bit, while the others did the circuit. Once the demand and expectation to join in had gone, she actually joined in. She got a bit much at times, but she enjoyed it. Leaving was difficult, but we did.

All in all it has been a difficult two days and dinky has tried really hard, but it has just been too much…

Football tomorrow. I can see it being fun…. Or not.