26 February 2018

Chapter 6 - I was going out of my mind.

A Journey into the Unknown

Chapter 5 consisted of us being referred and discharged immediately from community peadiatricians and made to jump through hoops, consisting of parenting courses. My daughter was deems a child that was an extreme version of normal – who had tiny traits of autism, which would eventually go away. After I had received the report from this appointment  I was so disappointed I complained until we referred again for her hyper – mobility and to have a thorough assessment of it with an expert.

Before we get to the bit where Lola got to see someone for her hyper-mobility, we have 9 months to get through. This chapter is going to be about all three of my little beauties as it's actually a key year. 
My youngest was a very poorly baby who was always ill, I think in 3 months since she was born we had called out two ambulances for her, one because of her temperature and breathing where she was put on a nebuliser in the ambulance and another because she had tonsillitis so badly that she had a febrile convulsion because of the temperature rising so high. She was just like Lolly, her skin would be all motely and her hands, feet and mouth would be blue, even her tongue.

In fact she was worse than Lolly, but again I was used to this and so it didn't worry me too much, there would be no warning for any of her illnesses, one minute she would be fine and the next she was convulsing with a temp of 43c. I was so scared, and just like the time with Lola choking I couldn't cope with seeing my baby passed out, I was so upset and I knew I wasn't doing any good with her in my arms so I passed her to Kenny, who brought her round. While I spoke to the 999 operator and packed her hospital bag. It's weird isn't it because if it was any other child but my own I would have been calm as anything and dealt with it appropriately.

This was number 2 on my most scariest moments list After Lolly choking! I was distraught. Shaking, pale. She was only tiny! What was happening to my children why could their tiny bodies not cope with a cold, or any thing. My boy was a very healthy baby and had nothing more than a common cold. I didn't know any other family who was in and out of hospital with their children as much as me at that point. I felt like I lived there. Lolly was so upset, she didn't understand, she thought that I wasn't going to bring Connie back home and I just had to leave her knowing she was so confused and upset, but my baby needed me, I had to leave her. Tonsillitis was diagnosed and we were discharged. It wasn't long before we were back down there, she had bronchiolitis, and whooping cough. She was practically foaming at her mouth, it was very watery, her skin was pale, and dry and She was very, very poorly. Was given some strong antibiotics and sent home. She picked up immediately on these and was happy and healthy again. Not for long, though.

It was Christmas soon of 2012 and we had booked a lodge in wales to spend Christmas, much to the dismay of our family, but we needed a break, we needed to get away without the worry of anyone else or the big get togethers over the festive period. These were particularly hard for us as a family. Lola didn't understand at all about birthdays and other special occasions. If you said happy birthday to her she would repeat it back love her, and still does.
She gets particularly anxious, lots of unstructured days, lots of visitors, bringing presents and having dinner it confuses her. So we decided to go away, a nice lodge with a hot tub in Wales. One whole week of relaxation and hopefully some snow!
It took us 8 hours to get there, Lola was an absolute nightmare, she was screaming, setting the others off, Connie was only little and needed changing and feeding often. Lola hated the car seat, hated the music, hated everything. It was the worst journey in the world. In the end I had to pull over and swap her into Kenny's van. She was not a happy girl, not even the promise of the hot tub when we got there could persuade her to calm down. We were soon learning that journeys with Lola were practically impossible. We weren't prepared, we didn't know about distractions for her disabilities because at that time she was just an "extreme version of normal" we weren't given any strategies to help her or us, we just had to deal with it, get on with it, punish her, make consequences for her behaviour, do her a reward chart, And wait for a parenting course to help me be a good parent. Eventually we arrived and unpacked after my car had broke down in the middle of nowhere with a screaming hungry baby, and a screaming anxious toddler and It was amazing, kids jumped straight in the hot tub, and we chilled with a well needed glass of wine and prepared for Christmas.
Connie was poorly again and she had a cough and cold and high temperature. She also came up in a rash! It was blanching though so it wasn't a worry. She got over it quite quickly this time thank god!
It rained the whole time we were there, we literally had to stay in and make do. Christmas was quiet and peaceful and very relaxed.
Lola didn't understand climate change Or couldn't feel certain temperatures she would want to wear shorts in the winter if it was sunny and try and go out with big coats on in summer if it was cloudy, It was a bit of a worry because once she had her mind set on an outfit, she would be adamant she was wearing it, and I swear nothing could change her mind. We did though in them days, we made her change clothes but the repercussions weren't worth it, and our motto now is "if it isn't harming her what's the point" if we went on holidays in winter to the coast she would want to go swimming and could
Not understand she wasn't allowed in the sea. It was almost like she was saying why are you bringing me to the sea of it's too cold for me to swim in? Logical really for a child, but "normal" children would understand after it being explained. No amount of explaining it to her would help her understand and so we would just let her find out herself.

It took us 2 1/2 hours to get home, big difference from 8 hours on the way there. It was good to be back. But then the realisation of back to work and back to school hit. I was also due to go back to work and needed childcare, so we hired a nanny, she came and worked three days a week, taking the kids to school, and picking them up and looking after Connie Mai at home. She would do the general tidying up. Lola was very difficult for her. Our routine was hard because Lola done odd pre school days so it was quite hard for her to get used to. She never listened to the nanny and was just generally difficult. At this point, Stanley had started regressing - academically he got left behind. He was in year 1. He was fidgety, inattentive, and disruptive. He was the same at home. We said before they were like chalk and cheese, and it was getting worse. We put it down to me going to work. I hadn't worked at all since having him so maybe it was just too big a change. His teachers in his class were changing all the time, which didn't help, the whole way through year 1 he and the other children were passed from pillar to post. He didn't cope well. His writing and phonics took a dive, he couldn't read, would not do any work at home at all, and eventually I stopped fighting with him about it. I refused to spend my couple of hours in the evening with him getting stressed over reading and homework so we left it.

At home he was gaining independence and becoming disruptive and belligerent Stanley withdrew further from me, not only did I have to spend practically 90% of time with Lola but Connie was poorly, with all her infections, she also had severe silent reflux, she got to the point where she would see the bottle and cry! She was in agony every time she fed. I went to the doctors and got her some special milk the same as what Connie was on after trying all the other things they ask and it still didn't work, I worked out she was also lactose intolerant so I went back and got one that was lactose free. She started feeding again, and began to be a little happier, I had to eliminate all lactose and dairy from her diet. She had a constant rash around her mouth. 

So with all of this going on, I guess he had to fend a little for himself, he learned to make his own breakfast, get ready himself in the mornings and just sit there watching TV whilst I ran around like a headless chicken. I was still shouting, I didn't know what else to do. At this point it was a habit. I found it hard to lower my voice and be reasonable I was majorly stressed out. I had turned into that person who threatened to "call daddy" when the children were being naughty and I hate that! I always said I would never do that, what's that proving? It's just proving to them that you know they don't respect you or listen to what you say. He used to listen once but not no more. I felt like he hated me, I desperately wanted I bring him back to me but I didn't know where to start, How do I do this? Where the hell am I going to find the time to make a child love me? Well I tried, and I tried and I tried to be a good mummy, to listen to him, show him attention but I just didn't have any patience or time or motivation, I was in catch 22, again every time I went to bed I swore I would be a better parent the next day, then I would spend all night up with Lola screaming for what I thought and was told was nothing more than night terrors and when It was time to get up I was exhausted, and had to get her dressed, which took over half an hour, and the brush her teeth which took another half an hour, with lots of screaming and growling and lashing out. So again I had no time for Stan.

When Stanley wanted to play with Lola she just annoyed him and made him moan or hurt her, when she wanted to play with him he ignored her or wound her up. At this point they were both struggling for control. Not one of them wanted to give in, and Stanley was so stubborn to the point of even choosing to play on his own instead of with her. He would walk away find something to do on his own. It was a major problem. If he couldn't be in control then you couldn't play his games, it had to be his games, and no one else was allowed to make something up or have any ideas. I was going out of my mind, What was going on. I was once the envy of other people. My children were so well behaved, when Lola was a baby and Stanley a toddler they were great I could go anywhere. I had visitors all the time. Not any more they were constant hard work. Will it ever get better? I certainly hoped so.

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Why Would You Want To Label Your Child?

I don’t actually, and ill tell you why - I don’t like the term ‘label’ and how it is defined by the people who choose to ask this question.  Its like a dig, an insult, its like they’re implying I want these ‘labels’ for selfish or unorthodox reasons.

Autism is not a ‘label’ - My daughter didn’t get a diagnosis so I could make her wear a signboard of her difficulties.

Attention Deficit Hyperactivity Disorder is not a ‘label’ - my daughter didn’t get a diagnosis so that I could excuse her behaviors.

Anxiety is not a ‘label’ - My daughter didn’t get a diagnosis to encourage people to be soft.

I could go on forever right? Please insert any diagnosis and any theory you may have and then listen carefully. These disorders, disabilities, special needs, extra needs, or whichever other definition you wish to use aren’t labels, they aren’t excuses, and parents like me whose children have these diagnoses are sick of hearing people call them labels. Professionals do it, friends do it, acquaintances do it without any thought or feeling for how this statement comes across to the people it is aimed at.

It is hurtful, it is judgmental, and it is completely unjustified.

People may say, ‘why bother having her labeled when you are doing everything for her anyway’ or “why do you have to label her when the school are giving the extra support’ and ‘what’s the point in a label all it will do is hinder her in the future with prospective jobs or relationships’ It will NOT hinder job prospects, and it will not hinder future relations, My child is who she is and I am proud of that, she will be proud of who she is too, because i will make sure of it.

Having my child diagnosed (which I sought out and fought for might I add) wasn’t for the benefit of myself; it was for the benefit of my daughter and the future she rightly deserves.  Having a diagnosis enabled her to have access to other services she would not have received otherwise. Having a diagnosis enabled me to help others understand her appropriately and begin to use the correct strategies for her conditions. Having a diagnosis has enabled me to be signposted to the correct support groups, and training courses that I wouldn’t otherwise have been able to access. These ‘labels’ do not hinder my child’s future they benefit it. These ‘labels’ are needed for support and understanding. Not having a label will be used against you for obtaining further assessments and referrals. Even though a diagnosis is not legally needed for obtaining support and assessments, you WILL be told this because funding is critically low, and as a diagnosis is proving more and more difficult to obtain therein lies the problem of the merry-go-round service.

Ever heard a teacher say:

“Im sorry, your child is not diagnosed so we cant refer her for this assessment”

Or the Special Educational Needs Co-ordinator say:

“im sorry to be able to have an educational psychologist assess your child they need to have a diagnosis of X, Y, Z first”

Or a Headteacher say:

“I’m sorry we cannot make an application for your child for an Education, Health and Care Plan, because she doesn’t have a diagnosis”

This is NOT true!!!!!

But you see, who are we to question these professionals’ rules? On the start of my journey I was told all of these. All of them are NOT true. Nothing is based on a child’s diagnosis, but to access the support and assessments it seems we need them. Even though this isn’t what it states in the SEN code of practice, it seems that that ‘Label’ is actually necessary.

Please don’t assume that I am labeling my child for other reasons other than to benefit her future, Please don’t think that these diagnoses are pointless, they are crucial for being able to access the correct support, and referrals and other assessments needed to be able to better our current situation and lifetime opportunities.

Do you feel like this? Have you been in a similar position? Please share your experiences in the comments.

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Autism Awareness - #YourJourneyMyBlog - The Cloth That Keeps My Child From Breaking

The month of April is best known for the explosion of Easter Bunnies, obscene amounts of chocolate as gifts for children and a magnificent feast to celebrate the resurrection of Christ. To many people April is Easter, They plan, they organise, many months in advance sometimes, Children have the time of their lives, gorging on chocolate, receiving gifts from extended family members, but to me, April is Autism Awareness month.

So to celebrate this, I am going to dedicate my blog for a whole month to families who wish to share their Autism Journey with you. Some of these people have autism themselves, some are autistic parents to autistic children. We have teachers with autistic students and even Bloggers who want share their journey with me, which I am very grateful for.

When you break a bone doctors cover it in plaster to enable it to mend. When you cut yourself a plaster helps you heal. When you are in pain we swallow medicine to ease our hurt. 

But what can you give a child when their heart breaks?

My daughter is 8 but already she has known fear, anxiety, stress and hurt. Someone once told me it is like the world is just too much for her. In some ways they are right. Lights are too bright, noise hurts her, people scare her, demands stress her and even eating makes her incredibly anxious.

She needs time alone. 

She needs physical closeness to mum. She needs consistent routine and reassurance. She needs something in her hand to help her transition from one thing to another. She needs encouragement constantly as her self esteem and mental health plummet like a rock falling from a cliff.

She is fragile. She breaks easily.

Yet once thing has kept her from breaking for 8 years now. It is something that can never be replaced. It has kept her going in tough times and comforted her through tears. It is a steadfast in a word that keeps on changing. It is always there, faithful, beautiful and reassuring. 

It is as dear to her as the air she breathes.

A little cloth. A bit of cotton that has been sewn together many times, taken to so many places and lived life with my child every single day.

To everyone else it is just a rag. To my daughter this cloth is wonderful.

She will not eat unless 'clothie' is right beside her. She will not sleep without it. It is hugged and kissed as she leaves for school and held to her face the second she is home.

'Clothie' is as precious and as fragile as Naomi herself. 

Both of them could so easily break.

The cloth has been battered, torn, sicked on and left behind a few times, exactly the same way as my daughter has. Others treat her cloth with distain much as she herself has felt too. As a tender, small, anxious child with autism she knows what it feels like to look and feel different just like her unique cloth.

I never thought I would learn to love a torn piece of muslin cloth so much as I do. It is what keeps my child going and what keeps her smiling.

Her cloth is priceless for one reason:

It is the cloth that keeps my child from breaking.

Maybe I need a 'clothie' too?

You can follow Miriam and her children on her blog page: 

You can also follow Miriam on Facebook too: 

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