15 December 2016

Chapter 5 - Jumping Through Hoops

A Journey into the Unknown

In the last part, Chapter 4 - Rock bottom before a diagnosis - there were a few details I missed out and so if you’re just joining us then you may be a bit confused, it might be wise to go back a little and start from the beginning. You'll find all the previous chapters on the Lots Of Love Actually page. It's not boring I promise. 

I’m going to start this chapter with a little bit about her sensitivities, before I knew about them to be able to understand them properly and help her efficiently.

Lola really struggled with just being a sister, she was convinced she was her mummy.

My daughter was always naked, as she hated being dressed. I didn't realise why, but I knew she loved to be naked and free. Everyone used to tell me to put her clothes back on but there was no point. She would just take them off again. She wouldn't entertain the idea of a pretty dress, it was more boyish clothes she liked, I mentioned before that she loved tracksuits or pyjamas.

She changed her clothes about 20 times a day.

She was always upstairs getting a new outfit. It was damn frustrating, her drawers were always a mess I was washing her clothes all the time. I had so much washing it was unbelievable. Eventually, we found what worked and what didn't and she learned to choose her clothes herself. We have a drawer full of stuff she will not wear and a few outfits she would wear until she was 26 unless I hid them, or "accidentally" ripped them up so she couldn't wear them. (Not really, but I did have to hide them and pretend I didn’t know where they were.) At age 4 she had been in the same school trousers since reception class and they were getting to the point where they were digging into her sides and the term ‘ankle swingers’ was an understatement. At the end of term, I threw them all in the bin so she then had to wear the "new" ones I brought a year before, that had been hanging around waiting for her to become attached to those too.

She would not wear tights, or leggings, (unless for bed) - I have no idea why that matters. She likes jeans or tracksuit bottoms or jean shorts. At this point (3 years old) I had only got her into a dress on special occasions but I still take that spare comfortable outfit I know she will want to change Into once she's had enough. 

There was a reason that she didn’t like clothes and was always naked and that’s because she hates the feel of clothes on her skin, the tags at her neck used to cause her massive rashes she was that sensitive. Certain materials hurt her. Imagine someone bought you that beautiful soft-looking fluffy jumper for Christmas and you tried it on and it was scratching your skin so much you couldn't wear it? Well, most clothes feel like this to her and so I just have to trust her and let her wear what she wants. I didn’t always feel like this, it took me a long time to get to the point where I can get over the frustration that her symptoms, traits cause me, and it wasn’t down to ignorance or intolerance, it was down to being uneducated. I used to get so angered at the number of clothes she was getting through, or the fact I couldn’t dress her how I wanted or that she was so independent. Everything had to be on her terms.

I don't care anymore if she looks like a tomboy. 

Or whether she is dressed in a tracksuit and her hair is all messy because she's sensitive to the brush, or her face is unclean because she hates being wiped. She's comfortable and happy and when she is happy, we all are. I don’t care what people think, if she’s scruffy, or if she’s wearing her brother's clothes, or even if her hair looks so awful it looks like it's been brushed with a firework. She is who she is and that really is all that matters.

She learned to be independent from a very early age, she was washing her own hair with shampoo and conditioner, she was dressing herself, she was choosing her own clothes, she was wiping her own face,  by age 2 easily. I do have those odd moments where I feel sad about the path we have to take, but those moments are few and don't really last for long, to be honest. She's such a courageous little girl and I admire her so much. She is strong, and confident, and I love her with all of my heart.

One thing that can be quite worrying with her is how heavy-handed she is, We got a kitten, and she used to pick him up and carry him under her arm like a baby and she never left him alone. He now, unsurprisingly, hates her. Anyone ever remember that story of Lenny and George? That's my baby! The same with others too she pushes too hard, squeezes too tight, if she's in the bath with you and she's washing your back she'll use her nails but she will get harder and harder, she loves this type of feedback that the sensation of scratching is giving her. When taking toys, she snatches, when walking around the house she stomps so hard it's like she’s jumping with every step, 

So coming back to where we left off last time, I’ve just had a new baby and my eldest boy was besotted with her, although a few nights in I heard him get up and slam his bedroom door after she had woken for the 189,675th time, whereas Lola just thought she was a dolly and that she could pick her up whenever she wanted to, I had to step up my vigilance now. I could not leave Baby alone for a second. I either had to make sure I took Lolly with me wherever I was going or that I took the Baby, Even to the toilet, I had to take Lolly with me. I couldn’t even pee in peace, all day every day one of them was by my side.

Lolly was going into pre-school, and my boy into year 1. They went back to school two days after I gave birth and I was really poorly with a womb infection and mastitis, so was pretty much laid up not doing much, Kenny took them both and I was gutted to be missing out on her first day. Turns out she was fine, she ran off quite happily. It was after about a week, she realised it was long term and she screamed and screamed, she didn't understand why we were leaving her. I know they don't really understand at that age anyway, but Her world was different, she was entering the unknown, people didn't understand her and we did, it scared her. She didn’t feel safe and her behaviour deteriorated. Her communication was limited, but because she was so young everyone just put it down to her age and that she was still a baby. 

The pre-school noted a few things that were of concern.

When she hurt herself she wouldn’t talk to anyone, she completely withdrew into herself and became mute. It worried people, A LOT especially if she had bumped her head. You had to be a very special person for Lolly to feel safe enough to reveal her true feelings to you when she was hurt. They also noted that she didn’t play and her attention span was only 1 minute. They couldn’t get her to engage, she would only do things on her own terms and she would constantly flit from one thing to another and never settle. She loved to sing, it was her favourite thing to do. In fact, she sang better than she could hold a conversation. If she spoke she used one-word answers. She was constantly disruptive and used to snatch a lot off of the other children and draw all over their work, she had no social skills, and because she was a live wire it was hard to keep up with her.

At Christmas, the pre-school gave each child a present and they brought her a book called “the naughty sheep” - how ironic. 

The long-awaited appointment with the community paediatricians.

Her appointment came around quickly, We arrived in time and sat in the waiting room, She went into the little playroom and closed the little gate behind her, it had a little lock on it and she just stood there opening it and closing it back up, it was really sweet, she stood there waiting for all the other children and would just unlock it and lock it back up again after they’d entered. We were called in and the paediatrician took an extensive history of her and our family background. The newest addition was very poorly she was 10-11 weeks old and she had a chest infection.

She noted all of her history, and they played some games and gave her a medical examination.

Here are a few things I forgot to mention before that I just read in the report.

1. She loved bath time.
2. When I was pregnant I couldn’t take her to the toilet all the time so I had to start counting for her and this became a habit for her and in the end she wouldn’t go upstairs without me counting for her.
3. She was addicted to undoing and doing up buckles, on high chairs and buggies etc, and zips and poppers. 
4. She didn’t like peek-a-boo as a baby, but at three years she enjoyed it like she was a baby. 

5. She used to talk to you looking up at the ceiling.
6. She used to wake up singing. (It was beautiful)
7. She would walk on her tip-toes. 
8. She used to lay on the floor and push cars to and fro whilst watching the wheels move.
9. She still used to choke at this age whilst eating dinner.
She used to eat or lick everything and anything. She used to eat non-food items.

At this assessment her Speech and language skills were assessed and were found to be age-appropriate, She demonstrated nice joint referencing, pointing and a variety of intonation and facial expressions and gestures. She “attended very well to the toys” She was chatty and played with dad.

I told them that she woke up screaming every single night and seemed to be in absolute agony. They told me it was, without a doubt, night terrors. I knew it wasn’t, I'd been there and done that with my boy, I knew what night terrors looked like; children looked frightened, scared. Not in agony, sweating, unable to communicate, feet burning up, I didn’t know what was wrong but she was most definitely awake whilst she was crying. 

I only found out that she had hypermobility when I received the consultant's report. Why hadn’t she told me? In her report, it says “she is however very hypermobile at the knees, ankles, fingers, hands and hips.” Did I not need to know this? I could have had questions about it. I did have questions about it. Many in fact, but I never got the chance to ask them because later on in her report it goes on to say

“WE have agreed the following plan”

1. Find a parenting program for the parents to attend.
2. I have discharged her from regular paediatric follow up.

WE did not agree any such thing, in fact discharging us was news to me. So I had no choice, I had to use Google. I Googled Hyper-mobility and found that her night-time waking was probably due to her pain. So I went back to the doctor and complained about being discharged and he got in contact with her, she took it to a panel of people who decided based on her findings that She did not need to be reviewed. These people haven’t even met her, None of them had even met me. What gave them the right to decide that her symptoms weren’t severe enough to warrant a review. 

Well, they weren’t banking on meeting someone like me. She did get a review in the end, I complained so much that they referred her to the consultant.

It also says she has excellent social communication skills, and that she is just an extreme version of normal. Huh? what the hell does this even mean? Apparently, she does have some tiny little traits but these will either become more prominent as time goes on or disappear completely.

So it was all my fault, I had a naughty child, I was imagining that she had something neurologically wrong with her. I needed to go on a parenting course to learn how to handle my three-year-old. They were forgetting I already had another child who had no behaviour issues at all. (At that point.)

I was so upset. I cried on the way home. I was angry and distraught, She had embarrassed me, made me feel really, really small. I thought that was the end of it. We just had to carry on and deal with it. No one believed me. I'll just go on a parenting course and learn some discipline strategies. Yeah right. That was never ever going to happen. If I thought I had already hit rock bottom, I was wrong.

I was deflated at this point. I left it. I thought ok ill give this a go. I’ll see if I can turn her behaviour around using neuro-typical behaviour strategies. I’ll jump through their hoops. Turns out the consultant we were referred to for her hyper-mobility was an absolute legend……….

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