16 February 2017

Worried About The future?

Excited about the future….

For the very first time in a long while, I am excited about the future. I have found something to focus on, something to get my creative juices flowing that not only allows me to escape out of the gloom once in a while, but has helped me to feel more positive and upbeat about the next chapter in our journey.

Let me take you back a little bit, I am a thirty-one year old mother to three beautiful and crazy children, and girlfriend of eleven years to Kenny. (No he hasn’t married me yet!)

As the title of my blog suggests we have autism in the family, not one child but two are diagnosed with ASC (Autism Spectrum Condition) and the third is being assessed a week on Tuesday. Lola also has a number of other associated disabilities and is currently undergoing some extensive genetic testing to find the cause. Kenny also has a disability, X – Linked Adrenomyleneuropathy is a neurological condition that affects the organs below the waist. He is disabled too and his mobility is seriously impacted. As you can imagine my family life workload is pretty heavy and as a result of this I had to quit my job, as a book – keeper for the family business in 2016.

I have already touched upon my feelings of being a full time carer in my blog post The Forgotten Carer, but it began ……

I am a forgotten carer, I didn't choose to be a carer and if I am honest it wouldn't have been o my list of dream jobs to do when i was younger

Its not that I don’t like caring for my family, I absolutely do, and it feels really good to know that I am doing my absolute best as a mother and partner and providing them all with the love and care that each one of them needs and deserves.

However, there was something missing, something in my life didn’t quite feel finished, I felt like I hadn’t accomplished my dreams, I had more to give, more to do. I was desperately searching for my dream. I always had ambitions, when I was little, I wanted to be a journalist, or a writer and I went through a stage of wanting to be a chef. As you can I settled for Blogger.

It was no use though this niggling feeling didn’t give up and one night after a long month of sleepless nights it finally hit me.

I wanted to write books, children’s’ books, and literally all at once I had the characters name, I knew what she looked like and I knew the exact storylines.

In the morning I contacted an illustrator because I knew I needed to get this character out of my head and onto paper, I’d even written the first book within a week and the lovely lady who is bringing my books to life has been a virtual friend for nearly 5 years. She knew exactly what I wanted, even by a brief description, and she had worked on her overnight and transformed an image created in my head to a beautiful digital drawing. I had my first character. Lucy Smith is one amazing artist. She got the whole concept of my book, she knew instinctively how she should look, what she should be wearing, what colors to use and my little Bunny’s personality shone through straight away. There was nothing to edit. There was nothing to change. No mistakes were made. She is a true professional and I cannot wait to start this journey with her and see what other creations she comes up with. If you want to check out her other work you can do so here: lucysmithart.com and her facebook page is Lucy Smith Art

The excitement that I felt in those first two weeks was immense, I was literally bursting at the seams and I couldn’t stop looking at my lovely new animated character, which became my screen saver in all of 5 seconds. To be able to have a career of my own actually fulfills me, to know that if I can make a decent income out of writing to secure a decent future for my children makes me feel safe and secure. Kenny isn’t going to be able to work forever and I need to start something that I can do from the comfort of my own home, with no pressure and be able to drop things at a moments notice, because after all first and foremost I am mother, partner and carer – not necessarily in that order – and this will always be my priority.

Over the last two years, from the time I started telling ‘Our Journey’ I have made some amazing new friends. I have been supported by lots of other people from all different walks of life, people from other countries, as far as America and the blogging world has really broadened my horizons. I feel really privileged to have met some of these wonderful people and Rachel MacAulay who is the editor over at Autism Awareness and has her own Blog page https://challaandhaggis.wordpress.com has even agreed to edit my books for me. Thank you Rachel, you not only publish my writing on your wonderful page, you’ve shared my writing from my own blog helping me reach an amount of people I could only have dreamed about, and you were also there for guidance when I needed you, I haven't met you but I am truly grateful for all that you have done, and part of my success is down to your own kindness and your faith in me.

So without further ado, I want to introduce you all to my gorgeous character Loola, a little bunny based on my daughter Lola, I want you to join me in my brand new adventure, I want to share my journey with you and I really hope you all love her as much as I do.

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14 February 2017

Institutionalising Disabled Children: Why Early Intervention Is So Important.

HOT OFF THE PRESS: Lenehan  review calls for urgent action.

A review published by the Department of mental health, regarding the care of disabled children and young people is calling for urgent action to prevent these children and young people from being institutionalised at a young age. See the original article here:

https://councilfordisabledchildren.org.uk/news-opinion/news/lenehan-review-calls-urgent-action

I didn’t get the memo sending us back to the dark ages? Institutionalised? A recent article even stated that these children are being moved some 300 miles from their family home because there are no spaces at local care homes.

These children do NOT need  institutionalising.

They do NOT need locking away. 

They need EARLY INTERVENTION.

These children and young adults are our future generations and with the ratio of children being diagnosed rapidly increasing, something needs to change NOW.

Why is it that after all of these years, I am still hearing stories from parents – who are overly concerned about their child’s development – that after referral they’ve been discharged from services and assessments, because their child has shown a certain amount of empathy, or had normal eye contact, or didn’t show any repetitive behaviors?

Why are so many services disregarding parental observations, and instincts based on a half hour meeting with a child they have only known through paper?

When we were first referred to the community pediatricians, we were asked a lot of developmental questions, a physical examination was completed, and some educational tests were done. We were discharged at 3 years and four months, with a child who was:

‘An extreme version of normal’

We were told to go a parenting course. The consultant was so judgmental, and unhelpful that from that one 30 minute appointment I had lost all faith in a system designed to help and intervene.

My daughter and our family were at this point at crisis stage, the HV actually said to me, that if my Mental Health wasn’t stable she wouldn’t have been leaving me. She was worried for my family an I because of the lack of support and the deterioration in my child’s and my mental health.

Not one single person believed me! I was on my own and that is one lonely place to be.

Eventually things had got so bad that they were forced to refer her again as an emergency and at four years nine months she was finally diagnosed. This is a full two and a half years after I had asked for help.

My  natural maternal instinct as a mother was spot on.

And it has been each and every single time I have suspected something amiss with her. She now has a multitude of diagnoses, learning difficulties and has just started a special school, which she is loving. I am hopeful for the future. But I am also very bitter that no one listened and we couldn’t get that very early intervention that we so desperately needed. The refusal to assess her early, has led to us missing out on, or a delay in every single service that we may have been entitled to.

Mentally she is three years behind her peers, but physically she is able. Which leaves her vulnerable in the way she is treated and peoples expectations of her.

I spent two years of her life researching and googling, and fighting for her rights. Those years we will never ever get back, but it was essential for our future and I would do it all over again if I needed to.

My advice is to do your homework, join support groups, which can be found in the search option of face book and ask lots of questions, document everything. Keep a behavior, sleep and food diary - know your stuff. If you go to your appointment where the opening line is “There’s something different about my child” and no real explanation of this then expect not to be taken seriously. Especially if your child has the ability to mask those subtle symptoms. Know what you want, don’t be afraid. You need to be strong and assertive. I wish any of you the best for future appointments. I hope that you are taken seriously and I hope that you are successful in getting early intervention for your child, because in my opinion it is KEY.

ThisBlog post was originally written for and published by Firefly.

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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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Marvellous Mondays - The Big NHS Twitter Wrap Party

Hello! and welcome to my regular series, Marvellous Mondays. Here I will be publishing positive stories from other people, including my fellow Bloggers. These posts will be positive posts to remind us all on those hard and tiring days that it CAN be better. To give a little insight into other families and what they've achieved, any milestones they have reached with their children or anything that has made them happy that day. Marvellous Mondays was born when i had a really, really bad weekend with my daughter. It was a Monday morning and I started to write a new blog post about how i was feeling and what had happened. I found that I was making myself feel even worse and so i stopped and turned it into a positive post. It made me feel so much better writing about the The Many Things I Love About My Child Anyone can join in with Marvellous Mondays, If you have a post that you wish to send me then please Email me at lotsofloveandaffection@outlook.com with a subject title of Marvellous Monday's and include a small description of who you are and a blog link if you have one. I'm really looking forward to sharing everyone's stories with you, and I hope you like them too.

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6 February 2017

The Big NHS Takeover - The SEND Parents Handbook.

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5 February 2017

Autism: Don't Force Me Into Your World Before You've Experienced Mine.

I am a strong believer in Early Intervention for children diagnosed with Autism and in fact any other condition that a child is diagnosed with that requires extra support.

Early Intervention doesn’t have to mean thousands of pounds forked out by the NHS or the LA for access to specialist treatment. It doesn’t necessarily mean that the child has to have XYZ therapy to be able to access life, as we know it. Although that would be fabulous wouldn’t it!

Lets go back to basics here, because all these children really need is support and understanding from the people who are with them the most, parents, teachers, grandparents, peers and siblings.

Children who are forced to conform into a society that they do not understand are going to lead a very confused life. It will create greater problems and difficulties for those being made to conform to anyone’s idea or normality. Suppressing a child’s way of life is creating a monster. A Great big monster that one day simply will not be able to cope in a world that they were forced to live in.

Entering their world and seeing things from their perception will only create a positive outcome. Before you can lead a child into “our world” or “your idea of normal” It is crucial for you to experience their “Normal”

Experiencing the things that the children take great pleasure in will enable you to form a trust bond with that child and in time, when the child knows that you understand they will begin to WANT to enter your “Normal” Tell me, please, instead of trying to make children sit still on their chairs, hands in their lap, looking alert and taking everything in, why can’t you lay on the floor with them and roll cars backwards and forwards for 10 minutes?

‘Its fun watching these wheels going round, the colors on the metal are creating pretty patterns when they hit the light shining through the windows and are spectacular to look at out of the corner of my eye, the reason I do it so much is because I am enthralled at how these wheels work, and absolutely mesmerized by how the light shining on this piece of metal can create rainbow patterns on the wall that otherwise is colorless. I want to show you, what I see when I lay here, I want to tell you, but I cannot find the words to express how I feel, sometimes I just wish you’d lay here with me, is that too much effort? Is it too much to ask? Do you not see what I see?’

‘If you cannot see what I see, how do you expect me to see what you see?’

‘Life is a two way street you know, I don’t want to be outside the classroom because I cannot sit still whilst you read a story. I really don’t want to be over here on my own, lining up these books whilst everyone else is taking part in-group work. I really just want to be included somehow but that’s up to you, because I’m still little you see, and I haven’t yet learnt how to problem solve. Could you help me, just a little? I promise that soon ill try the things that you’re asking of me, but I just need you to understand and accept me first.’

The amount of children being diagnosed with autism is increasing rapidly, as research grows and more is understood, more children are identified as having autism than ever before and we really need to change our outlook of “Normal”

Children need extra support in schools, the SEN budget has been crippled to such an extent that even the children with more severe needs, are being turned down for extra funding. Early intervention, early understanding and acceptance is vital. For if the child doesn’t get these important things early on in their life and in the educational setting, behavior will spiral out of control, the child ends up being excluded for behavioral reasons and moved to schools with policies which completely defy the techniques that are necessary for our children.

Its quite simple really, we need to stop making these children suppress their natural instincts, their natural abilities and their outlook on the world. Their way isn’t wrong, or bad, it’s simply theirs. Who are we to take that away from them? Why should we force them into our world without fully experiencing theirs first?

This post was originally written for and published by Autism Awareness

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