8 December 2016

Chapter 4 - Rock Bottom before a Diagnosis

A Journey Into the Unknown

I may have left you on a bit of a cliff-hanger in the last segment - Chapter 3 - The symptoms, but If you’re just joining us, then I have previously had concerns about my daughters behaviour and we had been referred to the Health Visiting team. They had spent a long time assessing us, meeting every month or so to see how and if she was progressing, and after that time the health visitor was as puzzled as everyone else, but she
had seen enough and had referred us on to the community paediatrician.

The Health Visitor left us with some really sound advice though: (imagine I’m saying that in a really sarcastic voice.)

1. To take away her dummy. Yeah, ok then! At that age, no one could have persuaded her to relinquish such an important tool that she needed.

2. Visit some toy libraries to get her playing and interested in toys. Seems easy right? I don’t think the librarians would have been best pleased had I rocked up and let her loose in a place where calm, cool, and quiet are practically set in stone in library bible land.

This was around July 2012, just before the summer holidays and she was due to start  preschool and her brother was in Reception class.

Writing this out makes me realise how much I missed of her brother's younger years, and also how much he missed too. I have no recollection of him being in Reception, how he did, his achievements, his struggles, and fears, any friendships he made. The only thing I remember is taking him to school and picking him up, and these aren’t even good memories, I only remember them because of the sheer struggle we had getting him there and back due to the behaviour from her.  Deep down I know and understand it wasn’t my fault directly, but on the surface I’m completely gutted because we are never getting that time back again.

We both missed out on those precious times because I could not concentrate on anything apart from her, I had to shush him regularly as she wouldn’t allow anyone else a look in with me. I was hers, and hers only. She was easily agitated. She would direct the way, only walking certain routes, at certain speeds, and god forbid we overtook her.

It was summertime and hot and we used to walk to school. She was nearly three and very challenging.

I was 8 months pregnant and very fat. 

Needless to say she ran rings around me. I always took the buggy with me on the way to school and at the time I had no idea why I did that considering there’s no way she would have even entertained getting in it. I think I thought it was for me to just prop myself up, but actually she wouldn’t hold my hand either, and she loved playing mummy, and pushing the buggy so this was why. We had to walk exactly the same way, which I learned quite quickly. We live a three-minute walk to school and there are numerous little ways we can take. I used to just walk whichever way took my fancy. But no, she had to lead the way. Every day it was the same, but that took us through the park and going through the park inevitably lead to distractions, she had to go down the slide at least twice before she would walk on. She would bolt in any direction and I had to be one step ahead of her all of the time so that I had a head start. I mean, she was fast, and her decision to run was literally within an instant. That’s why I had to be quick because there were roads everywhere and she has no sense of danger.

Imagine your child running away from you, and into roads, or into crowds and getting lost? Remember, I was 8 months pregnant, in the height of summer and I was exhausted from everything. All I wanted to do was get to the school and pick my boy up, but a three-minute walk took us 20 minutes every single day. We had screaming, pinching and biting from having to hold my hand across roads. There was this one time I was trying to put her in my car and she bolted straight across a busy road, I was so scared. Luckily there was nothing coming because it was the opposite side of the school and so a 30mph limit. I couldn’t get to her quickly enough, my heart was in my mouth and I was so angry with her. I had just literally told her not to go into the road.

This is one thing that we learned quite quickly with her and that was that everything we asked her not to do, or warned her of, like dangers she felt this impulsive need to do it anyway.

She was very particular, this little girl.

I had to walk directly behind her on the resurfaced part and if I moved she would make us go back and start again. All kinds of problems arose from our walk to school, when we finally got there we were met with masses of parents and children in the playground which seemed to create a sort of frenzy from within her and she would be everywhere. I had to follow her all around; because she was so unpredictable I couldn’t just leave her to wander whilst watching her. She would push the boundaries, walk off too far and sometimes managing to escape back out of the gate, she would seek out mummies and their prams and just put her hands all over new-born babies, or take their dummies out and, yes, suck them. She didn’t understand that it wasn’t hers and that she shouldn’t be touching; in her own world, everything was hers. In fact she OWNED the world. Running into classrooms and disrupting them seemed like the most fun thing for her to do, I would have to go and fetch her all the time, she was literally teleporting herself she was so quick, by the time I had reached inside the classroom she was either sat on the carpet listening to the story (Unaware of the giggles and whispers all around her from the class children) or on her way into the assembly hall.

I did the best I could by supervising her and not restricting her so much because that’s what caused us most problems when she wasn’t allowed somewhere or to do something she would completely breakdown.

Spoiled? Naughty? 

Nope, she had her ways and I learned how to manage them in the best way I could, according to our personal circumstances, because that's the most natural thing that we do as parents.

Some people used to say, she just needs discipline, or send her to her room, give her a slap. But even if I did any of these what would that be teaching her? Absolutely nothing. Not one thing would be gained from disciplining my child who was displaying these behaviours because of social and communication difficulties. I needed to teach her. But I couldn’t because I knew nothing myself. And regardless of all of that, traditional parenting styles like taking toys away, the naughty spot or putting her in her room just didn’t work, and if she did stay still for even two minutes to accept the time out, she'd have no clue as to why she was there in the first place, and taking toys away wouldn’t bother her one bit. She never played with them, she never had a favourite toy, or teddy, just a dummy and a blanket as a comforter.

I was convinced by this time it was autism. 

But every time I mentioned it, it was dismissed as bad behaviour or parenting issues. They used to look at her, walking around ordering everyone about, being rather adult-like at 3 and decided that no, autism is not the answer because she doesn’t look like she has autism. What does autism look like? If you’re autistic you aren’t given these special physical features so that everyone knows. Each individual is completely different. Just like you and I. No one person is the same and as the saying goes,

“If you’ve met one person with Autism, you’ve met one person with Autism.”

Everybody had decided it definitely wasn’t her. Close friends and family never even believed it; I struggled to convince Kenny even, which I don’t blame them for, because she is different. The only person to see in those early years, was my dad, god rest his soul. She isn’t typically autistic, if that’s even a thing, which is why she has the diagnosis of Atypical Autism. She presented in a way that needed to be unpicked, unravelled. I’ve no idea why, I could see it and I wasn’t a professional. 

So I learned that walking the three-minute walk to school wasn’t the answer and I should drive them. Drive? For a three-minute walk? I must be mad, or lazy, or both maybe. However, once we actually got into the rhythm of it and she got used to the new routine it worked really well. Unless I decided to make a detour to the shops, or park the other side of the school and walk down the alley, I soon found that I had to take the same route every day. You see there aren’t many things that you completely squash when it comes to an autistic person and their rigid thinking. You have to go with them. Different routes can distress her easily and set off high anxiety so much that it creates then unnecessary anxiety for the next day's journey.

Some things she and I said to each other were said every day, at the same time, for the same thing. This can get frustrating, when you are trying to get your kids to school and everything has to be completely the same and when you have more than one child to look after it can go off track in a split second, but again I quickly learned that it was easier to just do or say as asked. I had to park her next to the fence. Or she would scream. I had to take the same route. One time I went one little way different and she went into complete meltdown. This meltdown was actually one of the most intense she had at that age. She was inconsolable. We had some words now too, mostly shut up, sh** and F**k. What do you do with your child who swears like this? I ignored it of course, she was in the red zone, no words or reasoning was going to help at this point. They were only words but for her it was a release. It seemed to work because she didn’t swear for too long, (Only occasionally now) Like giving me the sly finger. Telling her it was inappropriate would only make her do it even more.

So the wait through the summer for that appointment was horrendous. The summer was long, and hot and I was stillllll pregnant. She never really recognized I was pregnant, never talked about a baby at all, I don’t think she understood. We muddled through the summer; until Kenny thought it would be a good idea to ride down a big hill on a child’s’ scooter. We had had one of the best days for years, my sister made us dinner, and came back early one summer evening and stopped at the park, something we rarely did as a family. We has lots of fun, Well they did whilst i watched because i looked like a beached whale! and felt like one too.

Picture this.

Pregnant lady with a dog unleashed, a three year old runaway, a 5 year old copycat about to go down the same big hill his father just did and Kenny who had just flown 20 feet in the air and landed on his back!!!!! I did not know what to do first. I know what I wanted to do. RUN and HIDE. I did, however, do what came naturally, I legged it back to the car with the dog left Lola and Stanley with Kenny on the floor crying in pain, started the engine and made a quick getaway.

Not Really, haha, I had you there right? 

I bundled the dog in the car whilst shouting at Stan to get the hell off of the scooter and grabbing Lola out of the road. I then went to see if Kenny was ok. Nope, he was white as a ghost and in agony. I knew something bad was wrong, so we got my mum round to have the kids and I took him to A&E. Broken collar-bone. The term 'one thing after another' seems to be one of those regular sayings in our household, and not for every day things either it was major stuff, like new illnesses to contend with, or extra diagnoses, it literally was a never ending road of bad, bad news. That night I made Kenny a bed on the sofa and slept downstairs with him, well I say slept because between a three year old who constantly screamed throughout the night and Kenny’s pain I was probably awake for most of it. I had to physically lift Kenny to help him move, wash him, and bath him, dress him for about a week. After that first night I moved the mattress downstairs so we could sleep better. It was an awful period. I have no idea how I never went into premature labour. There were a few times I had to be monitored due to early contractions that thankfully ceased. We had our bedroom decorated ready for the baby in the midst of this too, so it wasn’t all doom and gloom. 

I started getting contractions (again) two weeks before she finally made an appearance it was soul destroying. But finally we were about to start a new chapter in our lives, I had just received an appointment for Lola to see the paediatrician on 10th December 2013.

My beautiful baby girl was born on 2nd September weighing 5lb 9oz, My 2nd little dolly. She was beautiful.

After such a joyous occasion and filled with love, was this paediatrician appointment about to bring me down with an almighty crash? Hitting rock bottom is a regular occurrence in this house, but the only way is up, right?    

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