13 February 2017

Chapter 8 - Could It Get Any Worse?


A Journey Into The Unknown


It was great having a nanny so I could do a bit of work, Jade was amazing, the kids knew her and she knew them so it was easier for me to relax back into work. They were hard work for her but she was a natural!




It was getting on for summer now and summer holidays were nearly upon us again, Lola would be due to start in reception after the holidays and Stanley would go into year 2. I was excited about this because I was told school are much better at picking up on things, like autism and developmental delays  and they would be quick with referrals. I was just Hoping and praying they noticed and we had some support from them. Although nursery picked up on a lot of Lola's traits and thought something wasn't quite right, again they didn't suspect autism because of her social side, but the important thing they were missing here was her social awkwardness and the way that she was so over social so It was really hard, because peoples understanding of autism is that people are normally unsoicial.

Some family members by now were starting to pick up on little things, and listen to me. I think I had banged on for so long that they pretty much had no choice but to go along with it.

Lola is about 3 years 9 months old now, and was so demanding, and so controlling that every thing we did revolved around her. She had an obsession with shoes which was getting worse and every time someone came round she would not wait for them to take them off she would just ask for their shoes and wear them around changing in and out of everyone's. This was particularly hard - for other children especially - when they didn't want anyone else wearing their shoes. I didn't ever see it as a problem I would let her wear any. It wasn't causing any harm. But other children didn't want their shoes being worn, which was understandable and it caused problems, because she was so obsessed she would start screaming, and breakdown. I had stopped going shopping with her as I couldn't take her anywhere, I mean anywhere, I ordered everything online, and to this day amazon prime is my best friend. I used to love Christmas shopping and buying those little personal trinkets, but I just couldn't do it, and we couldn't do it all as a family and my god we tried, (I'll come to our MK shopping trip in a while) but it was no use, she was having between 10-15 meltdowns per day, and they were meltdowns. They weren't tantrums. They were full blown meltdowns. She didn't care who or what she hurt, she had no control over herself, and didn't care who was watching. Things were really tough, she was more and more violent, and especially with Connie I had to keep them completely separate. I couldn't just lay Connie down for a nap; I had to keep constant watch over them to make sure she wasn't hurting her. She would just pick her up and drop her on the floor, or stamp on her, pinch her or slap her. It would come out of the blue too, so we could just be sat there nicely and bam she would strike.

I was researching a lot. Always reading, about autism. I had become obsessed and every evening I would settle down to read up about it, find information on girls and why they presented differently, I would write it all down. I never gave in, not once because I couldn't afford to, my families happiness depended on it.

We were at breaking point.

Everyone in the family was suffering, I had such little time for anyone it was unreal. Who will help us? There wasn't anyone willing to listen and we had been discharged.

It was the end of the road for that wasn't it?

So it was the end of the summer term and time for Lola to take part in a sports day, and a little production at preschool. I was so excited even though I knew she would not do it. The production was based around nursery rhymes. Which she was singing all day long at the top of her voice. She would practically wake up singing, I swear it was like having a little musical alarm, it was the sweetest thing, to hear that coming from her mouth as soon as she'd opened her eyes was amazing! We went to watch and got seats at the front, as you do.

It all started and she froze, and she couldn't sing, clap, stand, anything.

"She was only little all children are like this"

That would be the reply to anything that was different about her. I hated it. It was dismissive; I didn't need things sugar coated for me.

I wanted cold hard facts. I needed to know what my child was like without me, not the watered down version but the warts and all versions! Be honest with me and tell me the truth. I'm not going to cry. Honestly I’m not.

(Well not in front of them obviously)

I swear I felt like everyone was conspiring against me. Why didn't they want to see what I saw? Why couldn't they open their minds? Just a little bit, and realise that actually when you have 30 children in a class and she's the only one "doing" these "things" then it isn't "normal" and all children don't do it. Logic tells you that right? So why could they not believe.

Arghhhhhh!



I was so frustrated and I needed support. I cried that day, I cried for myself and I cried for Lola. I cried because it was a realisation that even though no one believes it was autism, I did, and I also knew that this wasn't going to be the only production she froze in. And that I probably wouldn't get to see her do many plays, or carols, or sports day.

Can you imagine that? That realization was heartbreaking!


Stanley does fabulous in his plays, he loves them, when he does an assembly he's always up, straight, and loud and clear! He makes me so proud up there on that stage. And Connie is a born entertainer, but that doesn't take away the upset and the disappointment of not seeing Lola open up and perform. Its not the fact that she cant do it, or that she wont do it that is upsetting for me. It’s the fact that I know she could do it if she had the correct support and that breaks my heart a tiny little bit.

It was sports day next, and we were so shocked, Lola participated in most of the activities with extra support. She did amazing and I cried that day too out of sheer excitement and enjoyment. They then had an entertainer and party food and she enjoyed herself so so much! She sat at the front and watched the whole thing avidly.

You know when they ask for volunteers but say......

"you must be sat down on your bottom" 

And Lola is always on her feet before the instructions and she never gets a go because she's not listening, I feel so sorry for her, She tried so hard that day, to listen and do as she's told. But sometimes she just can't contain herself. She fidgets, instructions get lost, she mis-heard, Misunderstands.

But that didn't matter because she was just disruptive and naughty. She should listen more and then she might get picked! And pigs might fly.

Summertime, and the holidays, a chance to spend time with your families, days out, picnics, the park, shopping, meeting to with friends. We stayed in. The whole summer. Apart from when we went to Ibiza for my brothers wedding.

On the 25th June 2013 Lola had her appointment for hyper-mobility. It was an eye opener, they done some checks on her and yes she WAS hyper-mobile, quite severely actually, her beighton score was 6/9 which means she was hyper mobile in 6 out of 9 joints and also had flat feet. She was referred for shoe inserts. The paediatrician also asked me about her behavior. She was trying to escape, she was climbing on the notes trolley, she was turning the taps on and off full blast she kept trying to draw all over her notes and be the doctor! She was erratic.

I decided to treat Lola in front of the Doctor as a normal child and so I told her off. I got down on her level, put her on the naughty spot and told her she had to wait three minutes because she was naughty. Lola screamed and growled at me, she spat in my face and all down her clothes and legged it for the door. Normal??? I think not! The Doctor agreed and said she would refer us back to the Doctor we saw before to which I politely declined, seeing the same person that deemed my child ‘an extreme version of normal’ was not on my list of things to do before I was 30. So she referred us to another paediatrician. I was so happy I could have kissed her, And when I received her report well I was so relieved.

It states: 
"mum has tried managing her appropriately with time out which does NOT have any effect" 

Yay!!!!!!! Some one was finally on my page. Who would have thought it? Certainly not me I was expecting another knock back, another "no she's just naughty here go on a parenting course" which I still had to do by the way to prove I was willing to try all strategies offered to me! I was even told by the HV that if I didn't attend the referral would be taken away (more on the course later)




So we went to Ibiza, and It was lovely to get away but wow it was full on. Screaming all night. Every single meal - time was exhausting. The whole time round by the pool we were on edge and we couldn't settle. She is a proper water baby always wants to be swimming, and in the deep end no less. So one of us would have to be in there with her. The evenings were a game of cat and mouse and Lola would frighten the lives out of us it took a second and she would disappear, Just like that. We ha some high moments though, as Stanley learned to swim, We were all so proud, he was so confident and he loved it. Connie took her first few steps too. It was a holiday of milestones. and a bloody expensive one at that. But it was amazing to be abroad with my whole family and make precious memories, and i even got lola to try her uniform on which was a dress.




I'm just going to go back a few months and bring you up to speed on another factor of our lives that we had been shoved hard in the face by. and if youre following my face book page at the moment then you’ll see by recent events that things have progressed in our family and more people are diagnosed with the same thing.

Kenny was having some tests. He had a problem with walking and his legs hurt. He'd had this problem for years but after the trauma of the broken collar bone - You can read about his broken collar bone in Chapter 4 - Rock Bottom Before Diagnosis - it made it progress more quickly (that's my theory anyway) he was really struggling. Things were bad anyway with Lola but Kenny's mobility had gotten more noticeable by the day, people were picking up on it and it was hard! He went to his GP who done some tests on him and referred him to a neurologist straight away. We had the first appointment before our holiday and the consultant didn't give much away, we (I) asked lots if questions but he refused to name any condition until he'd had further tests done. They sent him for a cord scan. We had that done before we went too and just had to wait for the results! It made a tense holiday. I was worrying so much, and so was Kenny. We had so little time for ourselves that we hardly spoke about it.

We landed in England and hit back to reality quite sharpish. It was Connie's 1st birthday and Lola was due to start school. We also had an appointment through for Kenny's results, which they had marked as urgent. We had it hanging over our heads the whole time we were away like this massive elephant, Did he have cancer? What else could it have been? It wasn't long before we were given a pre diagnosis! And we both felt like our world was crashing down!


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