25 April 2017

Chapter 11 - Introducing PDA On Diagnosis Day

 A Journey Into The Unknown

Okay so I know I say this every single chapter and it's probably getting a bit repetitive now - but it's true - things got worse. We well and truly hit rock bottom going into 2014. Lola's behaviour was erratic, it's like she didn't care about anyone. She didn't care about other peoples feelings, there was no reasoning with her, she was lashing out, her anxiety was extreme, and we were at our wits end with her.

I didn't know what to do.

We had the occupational health therapist strategies in place, I mean I went berserk, I brought weighted blankets, weighted rucksacks, bean bags with zips and poppers and sensory dens, sensory swings. (Swing pods) all the lights you can imagine, bubble lamp, lava lamps salt rock lamps, she wasn't sleeping, she wasn't resting in the day. And by pick up time from school she was a complete and utter mess, nearly every day she was having accidents and she had no friends.

She loved people, and specifically spoke about a couple of children all the time but it just wasn't reciprocated in the same way. Lola loved adults too, and found companionship in a TA, whom she loved. The school described it as her special interest. (Not to me of course) but to the clinical professionals.

So breaking point was this:

Just a normal pick up for us, me carrying Lola out of school kicking and screaming, pushing a baby, whilst watching Stanley, strapping her in the car only for her to kick and scream and bite herself the whole way home. By this time we had moved Stanley to the front seat so that Lola couldn't hurt him as she frequently did once in the car. It was a horrendous evening, Kenny was working late, it was the beginning of the year 2014 and as a builder things were slow over Christmas so he worked a lot of evenings at that time. I was bathing Lola and Connie, Connie was 15 months and just sitting in the bath playing with her toys and toothbrush and I was sitting on the toilet. Lola pushed Connie’s head under the water, must have been a few seconds. I must have zoned out, I really don't know, or I was looking the other way, I can't quite remember but I didn't have 100% focus on them. And I blamed myself a lot after this. I was so angry. With Lola and with myself mostly. Why wasn't I watching them? I was sat right there.

I grabbed Lola's hand off of Connie’s head and grabbed her out of the bath, whacking her on the back as she was coughing and spluttering. But she was okay. She was fine. She didn't cry just coughed up and cuddled me. I was distraught I got Lola out the bath and Sent her to her bedroom, she had a look of confusion, hurt, upset in her eyes. She didn't realise why mummy was shouting, she didn't realise why Connie was coughing and spluttering, she didn't realise what she had done.

Here's why. She has no understanding of consequences. No idea of what her actions may cause. She just doesn't. That doesn't stop me getting cross though. I couldn't even look at her and even in that moment I knew it wasn't her fault and the little look on her face whilst I put her in her room was devastating. But once again Connie needed me and I couldn't concentrate on Lola I needed to concentrate on Connie

                            (At Peppa Pig World - Phoning the Local Authority)

That night I've never been so grateful for an unannounced visitor.  My sister walking in and taking control because to be honest I couldn't even think. I wanted to just run away, hide and stay there for a long long time. Becky went and dealt with Lola and I phoned 111 because I had freaked myself out with something called delayed drowning. Once I had calmed myself down enough to look at Lola I went to her room and she just melted in my arms. There wasn't any need for words right then I knew I had to protect Lola even from herself because if I wasn't there to teach her that these things are wrong then what will she do next? She needed me to be calm, and stop shouting and understand her because to teach her life skills I have to understand her inside and out.

An ambulance was called and Connie Mai was checked over and was fine. And back to the doctors I went the next day to demand that someone help us. We saw a different GP this time and this one I ask for every time to see Lola. He wrote a letter to CAMHS and within two weeks I received a letter for an appointment for an ADOS (autism diagnostic observation schedule) for ten days time.

I was so grateful

 In other news –

Kenny has his lumbar puncture, he was scared, but I told him if Connie could have one without crying then he could manage it so we went together just like all his other appointments, he must feel like he has a second mother with me about. I make sure I go to every appointment, know everything there is to know and I'm quite overbearing actually when you look at it like that but at least we all know what's going on as if it was left to him we wouldn't know anything.

So this lumbar puncture was the next test in line to confirm primary progressive multiple sclerosis. The procedure was done on a day ward and it was over and done with within a couple hours. It wasn't as bad as he was expecting and he felt fine after. I made him go home and lay down for two days though.

The results were all clear.

We were ecstatic. But that didn't solve any of his problems, his legs were getting worse. He was unbalanced, unco-ordinated and in a lot of pain daily. He describes it as - imagine you were to kneel on your legs for half an hour and they were to go all tingly and numb, that's how his legs feel constantly. Every second of every single day. I know I couldn't bare it. I have no idea how he manages to get through each and every day feeling like this.

So I went into school and told them Lola's appointment was imminent and that could they start the statement process, to which they agreed, they said they would start collecting evidence. Which they never did. They told me that Lola needed a diagnosis before they could apply for an assessment of her needs. I knew this to be false and so pulled them up on it. They agreed to apply again, Which they never did.

So I applied myself, with bucketful’s of evidence as to why she needed extra funding. I researched all the correct terminologies, and laws, SEN code of practice quotes, got together all her reports from the consultants and pediatricians and hunted out all her school reports. It took an age and I worked on it for weeks. Her ADOS appointment came around very quickly - it was end of March sometime. I was so very nervous that she was going to be having a good day, because this happened quite frequently with Lola, she would just switch, and be a completely different person to the point where I think I imagine things but luckily she was just her normal beautiful self. She was Lola, and she behaved in a way that she would normally behave in. She was difficult, hard to read, uncontrollable, and had the need to control others. She was silent for most of the appointment. They done a series of games and used prompts, the whole thing took about an hour and Lola showed enjoyment in one thing - which was the bubbles. She smiled and laughed and shared her enjoyment. And as soon as they went away she growled and clammed up.

The speech and language therapist who conducted the ADOS said she suspected a diagnosis would be given of autism but that she needed a clinical psychologist to go and view Lola at school and have an interview with the teacher.

(I now have access to that interview) and let me tell you this - For someone who was supposed to be fine at school, according to the teachers own admissions she certainly wasn't if this questionnaire is anything to go by.

I had feedback from the clinical psychologist, who mentioned a few things but never really said anything. Wasn't worth the phone call if I'm honest. We just had to wait two weeks for the appointment for diagnosis if any. I convinced myself I would have to keep fighting, I was sure they were going to turn us away again and that it was a waste of time, and that I’d have more hard work and more appointments to fight for.

Turns out I needn't have worried.

Lola scored high on the ADOS and on the social communication questionnaires. She was diagnosed as ATYPICAL AUTISM.

For those of you wondering why, it's because she displays quite different from a child with classic autism. She is social, sometimes too social. And she manages to hold all her anxiety in at school so they don't see the struggle. She masks all her symptoms, because she is a girl and naturally girls need to be social don't they? They have it built in them to get along in life and Lola has adopted these coping mechanisms to survive. But as soon as mummy picks her up she can be herself and the bottle top comes off and she explodes all over me. Just before this though and this is where I am going to bring your attention to a little something called PDA (Pathological demand avoidance!) Something I came across when googling the term "autism in girls" and "why is it hard to detect autism in girls" (see I was Google maniac and I googled a lot at this point) I read everything. And when googling this it took me to a page on the national autistic society.

With a clear description of a condition called PDA, which was at this point described as "a condition increasingly known as an autism spectrum disorder" (that's changed now) but last year no one would even acknowledge it, it's like all professionals had been brainwashed to ignore this term, they brushed it off, professed to not know what I was talking about. But when I read the page on PDA, it was quite literally like reading a chapter of her life, it described her to a tee! And so I found a support group and researched some more. It was Lola.

She was PDA.

How could she be so like this and it not be recognized? It was postcode lottery. Some children and adults like Julia Duant have a diagnosis of PDA, or of autism with added demand avoidance.

It was so important she got an autism diagnosis that I didn't push it with her consultant and Instead I adopted the styles and techniques and learning strategies that were having consistent positive effects for children with PDA and used these at home. With much more benefit.

It was a struggle at first to convince Kenny. You'll see why when Julia from Me, Myself and PDA explains about PDA. And it's symptoms and it's very diverse strategies. But I made Kenny and my mum fill out a PDA questionnaire and Lola scored just as highly as when I scored her. I was so excited I found something that fit her. For once I agreed with the professionals she didn't quite fit the classic autism diagnosis. And going back to the PDA support group they inform me that basically atypical was PDA. We had more referrals from that diagnosing appointment too, Lola was to see a gastro doctor as she always has bad belly and was frequently sick. Without having a bug. She suggested a reduced dairy diet, so no big cups of milk but milk on cereals was ok, and limit the cheese and yogurts etc. it helped but it didn't cure it. So by the next appointment Lola was on a completely dairy free diet and things were much better. Coeliacs disease was mentioned and she had bloods taken for genetics and coeliacs disease.

At the same time Stanley had his appointment for the neurofibromatosis and he had bloods taken for vitamin d deficiency and other things too. Stanley saw the neurology consultant who didn't diagnose NF1, because to have it you need at least 6 of the café-au-lait marks and he had 4. So he was to have an eye test to check the health of his eyes and come back in one year. We have had his second follow up eye test though, where they had flagged up dyslexia and have been referred to the dyslexia research center for testing. He has six months worth of research sessions and then we get a full report and special glasses if needed. Stanley was reporting that he sees some letters and numbers as colours.

So we had a diagnosis, we had a dairy free diet -which was showing improvements. And I had sent off my request for an assessment of Lola's special educational needs, for a statement. And requested that the school get the EP (educational psychologist) in for a visit to assess her needs.

They were adamant they weren't going to request this and kept putting me off stating they hadn't collected enough evidence and that the EP was very busy and that they thought Lola was okay. I felt so alone and that no one was supporting me, it was awful. I felt paranoid that they were talking behind my back and I sat there and I spent about two months collecting evidence, arranging more appointments for Lola with the SALT, (speech and language) and OT (occupational therapist) for a full assessment of her needs as evidence towards an assessment. These reports showed that Lola needed a significant amount of extra support. The request was due to go to a panel of decision makers on 30th July 2014 This was Lola's birthday and we were at Peppa pig world. I was so anxious all day, I knew in my heart it would be bad news but I was still hoping. I phoned them and they said they had no news for me but would contact me ASAP with a decision.

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