Tired of all these Autism and ADHD brats!

dinkyandme:

Brilliant!

Originally posted on Pensive Aspie:

10268546_1487432814806734_4018031423596980513_nWhen I was a kid they didn’t call it “Behavioral Disorders.”  They called it “Being a little brat!”  This is just ONE of many memes I have seen on my social networks. They are shared by my friends and family. I would like to think that is just the ignorant/uneducated who feel this way, but it isn’t.

Driving home from work a couple weeks ago, a college-educated peer told me that she felt that “most of these autism and adhd diagnoses” are fabricated.  Her son had some of the traits of a child with Autism/ADHD but HE doesn’t have Autism/ADHD so maybe it doesn’t really exist. She felt it was just an “excuse” for people NOT to parent. Did I mention she was COLLEGE EDUCATED?!?  She knew about my blog, my Asperger’s, and my beliefs, but since my thoughts are different from hers, of course mine MUST be wrong.  After…

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Dinky now has a statement, and possibly a school!

This week has seen 2 big education wins.

Firstly, yesterday I went to see I a special school, it was classed as an EBD school but it was the only school that replied to our DPS.

I actually went to show the social worker why EBD wouldn’t work for Dinky.

When I got there I must say I was mightily impressed! The school gives each child a keyworker and the curriculum is tailored to each individual child. Dinky would be the youngest and would probably share a classroom with 2 other children who would be slightly older.
They strive to take children with a range of additional needs not just BESD and have a number of autistic students.

Dinky would be able to leave the classroom when necessary with her key worker and PDA strategies would be utilised.

They offered for Dinky to write her own menu to take into account her rigid and repetitive diet, they offered to purchase her, her own iPad for school use using the pupil premium, and to make any type of visual they need.

They told me their communications book is vital, and they expect parents to write in it every evening in order to let them know what the child’s evening was like.

It was basically everything I wanted to happen at her old school, but with less children, Dinky will be in a school with just 13 children from 6 all the way up to 16 years.

Then today, her final statement appeared. Not one mention of BESD, only one mention of challenging behaviour and that it was ‘inextricably linked to her autism/ communication and interaction difficulties’.
It feels amazing, especially when my original letter requesting the statement was 25th September 2013, it has taken nearly 11 months to get here.

Part 4- there is no school named but it says

“A day placement at a special school which caters for children and young people with social communication and interaction difficulties, PDA, sensory difficulties and associated challenging behaviour”

I could do a happy dance that finally Dinky has a statement and education is coming together, in June it was health coming together, and by the sounds of it, social care may also be coming together in September! (The SW said that she will try and get direct payment which gives more during the holidays but some hours during the week so that we can Keep Dinky’s current 1:1 who dinky adores and who adores Dinky. Actually I’m surprised as apparently Dinky has had a number of meltdowns and yet they have been dealt with and still the 1:1 comes back and asks what hours we had agreed and what Dinky wants to do!

I feel some things are really coming together.

It is such a shame that something else entirely can take the shine off these events.

The county autism centre seem set on lying about the fact that they choose when to follow their own rules. I have the proof that they lied, I have the proof that they said PDA wasn’t an ASD, where does this get me? Yes, blocked in a childish attempt by the project manager to show me that she won’t be trifled with.

Hmm. I think that she may feel differently when I can prove IN WRITING that they have acted in a discriminatory fashion and then lied to cover their backs, if anything more comes of it, it would be considered victimisation and I WILL NOT STAND FOR IT!

Dinky deserves the support and understanding of the county autism centre, yet she was deemed unfit for services. I went over their heads and they have now got someone in to train staff on PDA, who is telling their staff that no one in the uk has a diagnosis of PDA, and that PDA is different from ASD.

Erm…

Maybe that person should do some research.

The PDA society
The PDA resource page
Norsaca

Any of these websites would instantly rectify the gaps in the trainers knowledge.

I am not happy, and I won’t stand for it!

I should be nearing the end of Dinky’s battles to get anywhere, instead I have to fight against prejudice from the county Autism centre. They will say ‘oh but we now provide training on PDA’, yes- but the training is actually misinformed, I am still blocked, still receive no services for dinky and they still lied.

CAMHS and CCG

It has been a busy couple of days.

Dinky has been off with her special needs group yesterday on one of her 3 days during the 6 weeks.
So it gave me the freedom to go to Dinky’s initial CAMHS appointment regarding her ADHD assessment, because you know that just having ASD-PDA, sensory issues and sleep difficulties isn’t enough for my Dinky lol!

As soon as I dropped her off I went to the appointment with the Conners questionnaire, the strengths, difficulties questionnaire, the ASD questionnaire and my parental concern sheet.

To be honest after being turned down by CAMHS a grand total of 5 times, I didn’t know what to expect. There are lots of people angry and dismayed by their services.
I went in with an open mind.

Instantly I was happy! The woman I saw read Dinky’s diagnosis letter and said that some people don’t believe in PDA, but she wasn’t one of them.
We discussed PDA and it’s place within autism, we also discussed schooling. I was even more happy when we talked about the type of provision for PDA and she agreed that a BESD approach would be detrimental to Dinky and her future in education. I should have got that in writing for the social worker as I believe the only school that came back with an EOI (expression of interest) from the last DPS, is indeed a BESD school.
Should be interesting, I plan on giving scenarios and bringing evidence that those strategies are wrong. Hopefully this will show the social worker I have every need to be ‘picky’ about which school I send her to.
The CAMHS person was surprised at the small amount of support we were getting.
She skimmed the questionnaires and didn’t seem surprised that the ASD questionnaire came back positive for ASD.
We then discussed how this would go. As Dinky is not at school, she asked if I was ok with them sending the Conners form to the old school. I agreed to this because funnily enough ADHD is the only thing the school DID agree on! Plus the head of nurture was a fair woman, just unfortunate that dinky was put in there when it was obvious that it was not right for her.

I her that the paediatrician wants to trial Dinky on methylphenidate and that I was reluctant without a medical cause. Of course dinky has enough trouble with education with her PDA, I want to give her the best chance of attending if and when she might be willing to engage, but without a justified reason, it seemed wrong to give my 6 year old stimulants. She agreed with me, and then said that she would talk to the psychologist and get Dinky’s case marked as a priority for clarification.

We could have the diagnostic appointment as early as the end of September as most of the work has been done by CDC and her ADHD symptoms seen in clinic have been logged.

It was very productive and positive.

This morning dinky had 5 hours with her 1:1.

I was going to chill right?

Erm no… I had a meeting with someone from the CCG. I was asked by the local parent carer group to share my story with them as they are trying to make things work for children with additional needs.

I took all my paperwork.

I started at the beginning… I took my red book which showed Dinky was behind with her speech at 2 and for 20 months I kept going back and asking for the speech and language review I had been told was needed.
I went through the whole thing, how Dinky was turned down by CAMHS, the GP didn’t know where to send her, they didn’t see autism. And the impact that had on dinky and me, blamed it on our housing blip, blamed it on my parenting, on our social economic status.
Many times the CCG woman gasped, she couldn’t believe the things that had been said and how we were forced out of the first primary school.
We moved onto the latest school, the 20 minute NHS SALT assessment we had waited 3 years for, which contradicted itself and made out there was no issues despite other professionals having reported the opposite.
We discussed the paediatrician who said she may have PDA, but he wasn’t concerned about ASD.
We carried on discussing how things had gone, how my only sanity saver was the pals officer whom helped immensely!
We discussed OT who despite not talking to dinky once said dinky didn’t need a special school.
Again the woman was shocked!

I took us right up to date to the diagnosis and the CAMHS appointment yesterday.

I went to make the point that all of this could have been stopped at 2… Went to grab the red book from the bottom of the thick pile of paperwork I have amassed over the last 4 years… I then ended up flinging my phone on the floor… Kind of dampened the point I was trying to make, but I recovered well lol

The woman said that it is obvious there needs to be a complex presentation pathway, and she invited me to events and meetings to re shape the services.

I was very happy! I would love to make a difference.

I couldn’t leave without mentioning a family who were recently told our CDC don’t diagnose PDA, she gave me her card and told me to give the family her details and she would try to help the family.

It felt good to be part of making a difference to the future of services!

24- an autism (PDA) day

12am- Time for bed.

1am- still asleep

2am- Dinky has been awake for 20 minutes and had come downstairs. I hear her in the kitchen, I know she is trying to find her iPad. I peel myself off my bed and stumble out to the kitchen and tell her that her iPad is sleeping (out of habit) and that we need to change her bedtime pad. So we go into the toilet, I take out the saturated pad and put it in a nappy sack and place it in the bin, Dinky is then trying to get hold of the toothpaste to squirt it everywhere. I stop her, and manage to wipe her and get the new pad in. I took her back up to her bedroom and tell her it is still night time and asked her what that meant. She didn’t want to answer and kicked me instead, luckily my reactions are quick and she only got a glancing blow in as I jumped back.
“Boys house later?” Dinky asks as I go to leave. “Yes, we are going to boys house for dinner later, but first you need to be sleeping!”
I go back downstairs and the dog is wagging her tail and sticking her tongue out. I then open the front door and let the dog go for a wee outside.
Back to my room and lay down, all I can hear is the springs on the mini trampette and it banging on the floor in Dinky’s room as she jumps up and down. I make the 100th mental note to buy some sort of mat or rug to go under it to see in that helps the banging noise.

3am- Dinky is still bouncing, my eyes are heavy and I’m slowly getting more and more wound up. But she passes out not long after 3.

4am- sleeping

5am- dinky is up and the dog has left to join her in the living room as she puts the tv on full blast so the neighbours can also hear ninjago that I had recorded for her. I sneak an extra 15 minutes, before peel if myself once again off my bed in time for the adverts. I have to get in quick before Dinky presses fast forward. I just manage in time and we go to the bathroom and I dispose of the bedtime pad. I wipe her and know that tooth brushing will be tricky, so I think about how to word it, “hmmm let me see those beautiful teeth!”. Dinky grins. “Hmmm I think they need a bit of a polish… What do you think?”. Dinky thinks about it, “no thanks” and she runs back into the living room. Another ridiculous advert, and dinky is back to ninjago. She hangs upside down and kicks her legs on the back of the sofa.

6am- I feed the dog and Dinky asks me to get her breakfast bits. I grab a bowl, spoon, cereal and milk. Dinky likes to pour it herself and goes ‘into one’ if I do it, so I watch on as dinky gets cereal all over the table and drops bits on the floor. Then the milk… I purposely buy small 1 pint bottles so they are easier to pour, which they are, but Dinky still manages to pour it in the bowl and then on the table. I tidy the milk and clear up the cereal which didn’t make it into the bowl before the dog gets it.

7am- Dinky is hanging upside down again on the sofa and I go through the day with her.. We are going to get dressed, take the dog for a walk, and go to the autism friendly screening of ‘the nut job’. She asks what then. I tell her we come home and then go to her new friends house for dinner.

8am- I have been trying to get Dinky ready for the past 15 minutes but to no avail. Dinky was hiding in the tent. The poor dog was crying and was desperate for the toilet.
Dinky was having none of it

9am- FINALLY got dinky dressed after a lot of her refusing to wear the clothes that I picked out, yet refusing to pick clothes to wear, I put all of her clothes on and put her pjs in the wash basket.
Dinky went to the toilet and was in there for a while, so I had to go and wipe her before trying the tooth brushing again… Nope.
I put her shoes on and we took the dog out. Dinky say on the bench while I threw the ball for the dog and cleared up her mess.
Dinky had my phone and had ‘everything is awesome’ on repeat.

10am- nearly time to get the bus to the cinema, dinky had opted for the bus that starts just near our house but is a 5 minute walk from the bus stop to the cinema.
So we get ready again, dinky packs loads of toys and 2 teddies into her back pack and we head out.
Dinky wanted to lay down on the seat at the bus stop but there was someone sitting on it. She didn’t talk, just looked at the seat and at me and growled, I knew instinctively what it was about. She couldn’t talk because of the stranger, so kicked me instead. Again thanks to my reactions I managed not to take the full whack!
The person at the bus stop just looked at me with disgust as I then, instead of punishing Dinky, told her it would be ok, the bus was due and therefore it wouldn’t be long before she could sit next to me.
The bus then came, Dinky got on and went to the seats near the pole. She began spinning round the pole. The person from the bus stop was gawping at Dinky, I so badly wanted to go down to her and tell her that if dinky had a physical disability she wouldn’t be so judgemental!
A group of people got on the bus a few stops after we got on and dinky was not happy, she shouted “STRANGERS” and was bouncing between the seats. The bus stopped and dinky ran off the bus. I ran after her. Luckily, she had jumped off in a place that wasn’t too bad to get to the cinema still.
Dinky was then talking very fast about dinosaurs in walking with dinosaurs.

11am- the film is about to start, I am sitting with Dinky’s new friend’s mum as the kids are running around before the film starts. I then went to get dinky to settle her a bit before the film. Then another lad came in. He has a diagnosis of autistic traits and is very impulsive and rarely listens to his parents. I wanted to get dinky sat down as she would be running round and causing mayhem with him given half the chance. So I got dinky to come and sit back in our seats and the lad wanted to sit with us. Thankfully his dad came and he went back down to the bottom. I didn’t want to be cruel but I didn’t pay for the cinema for dinky to create merry hell and miss the film that she wanted to see. Even with the CEA card it was cheaper but I’m still not up for throwing my money away!

12pm- dinky had found sitting still near on Impossible and the thought of her initial appointment with CAMHS on Tuesday to discuss ADHD was seeming more and more needed. The impulsive lad had begun to run around and then can up to us. I asked him politely but firmly to sit in the seats infront of us as Dinky was trying to watch the film, and he did, instantly. His mum came up to get him and he wasn’t listening, he then went back down with her, only to run back up again after a short period of time, run back up to us, then crawled across the back of the cinema, much to his mother’s dismay.
As much as I knew it wasn’t helping, I had to keep reminding Dinky to stay in her seat and watch the film. But again, if I’d given her an inch she would have taken a mile.
The film finishes and I’m desperate for the toilet but Dinky wants to dance. So I patiently wait, then the impulsive lad began to jump up onto the ledge in front of the screen, instantly I asked dinky if she should be doing that and another parent shouted down to their boy not to join the lad. Only then did I hear the mum softly say ‘no don’t do that’.
I was now urgently trying to get Dinky to leave, she asked how we were getting home so I told her we were going by bus.
A parent of a child Dinky used to play with a lot before the ‘living in a hostel’ thing was there and dinky went up to her and asked if she could drive us home. I said no before the parent could, I was instantly annoyed by Dinky’s insistence on asking people for lifts like a mini hitchhiker!
I pulled dinky out of the cinema to the toilet. I went and then helped Dinky and wiped her, washed her hands with her and left. Dinky walked out with a other child and I had to pull her away because we were going to miss our bus.

1pm- we missed our bus because Dinky was sitting on the floor refusing to move. In the end I gave her a piggy back ride to the bus stop of the bus that stops 10 minutes from our house. Dinky is not a light child, nor is she over weight, she is just a six year old, healthy, sturdy child. I was tired just carrying her to the bus stop.
Dinky then kicked off because I don’t drive. Punched and kicked and screamed at, we got on the bus.
Dinky did not want to walk, she was throwing out avoidance tactic after avoidance tactic. In the end she agreed to walk and to give examples of how I could get a car, each less likely than the one before it.
We had lunch, dinky had the same lunch food that she has everyday.

2pm- dad cancelled on us, so we went to Dinky’s friends house early. Again dinky was talking non stop about how I should and could get a car.
We got to the house and I gave the mum Dinky’s hotdogs as dinky won’t eat anything else at the moment. I had, on the way over explained about his new rabbit, and about how much we show we love the animals. Picking up cats and playing with them… Not ok, as they don’t like it. Also the rabbit is new, so you need to listen to the mum as she will say what you can and can’t do with the rabbit.

3pm- dinky was being controlling and had already picked up a cat to play with it on the slide. She was trying to control the boy (ASD and ADHD), but the boy was not very happy due to lots of recent changes and the two were alternating between playing well together and fighting. Both of us parents were ready to jump in at a moments notice to break up any issues. Both never truly relaxing.

4pm- still more nice playing than issues, but dinky was being rather avoidant, the level of my unease had gone up as dinky hid under the trampoline. I did say, we should probably go, but Dinky’s rigid thinking meant she wouldn’t as she was told she was having dinner at the boys house.

5pm- issues were happening every 10 minutes and I had tried to get dinky to agree to leave but she wanted to eat, but the other mum couldn’t cook and leave me to the two of them while they were being physical with each other.

5.45pm- I decided to call it a day, it was past Dinky’s normal dinner time and both kids were struggling, I tried to explaining to dinky who went into a complete meltdown over it. I took the physical abuse and got her shoes on, in the end I had to firemans lift her home while she was kicking and screaming at me.

6pm- once we got home it wasn’t long before she settled with a hotdog. I decided to forgo the bath time mayhem and get her ready for bed. She managed to take her slow release melatonin tablet and went upstairs. She was banging around in her room.

7pm- still banging around her room while I got myself some dinner. Dinky came down to ask me what I was having for dinner while I put the washing on.

8pm- dinky comes down for the 5th time and I have to once again help her in the bathroom. Then I hung out the washing.

9pm- dinky is quiet.

10pm- dinky is definitely asleep. I finished Dinky’s form for CAMHS.

11pm- I read my book for an hour to wind down.

12am- bedtime!