asd, autism, Blogmas, christmas, general, lifestyle, review, special needs

I named a star

Christmas came a little early in our house this year as the lovely people at Star Name Registry offered me the chance to name my very own star.

I have three children. Each one of them is absolutely perfect in every way and like any mother, I love them all the same. But I knew straight away I wanted to name the star after my middle child, Jessica Rose.

Jessica is 9 and has special educational needs, and because she needs the extra support and help to get by in life, and probably always will, she is my little star, and shines brightly every single day. I wanted to be able to tell her that she is so special, we named a star after her.

I received a beautiful silver box containing the Extra Bright Gift Set, which is one of their best selling packages

 

 

The gift set includes

Entry into the registry
A4 Star Name Deed
The Sky Atlas star maps
Confirmation letter
A4 silver certificate frame
surrounded by light blue tissue paper
Large silver presentation box
Extra Bright Star gift explained

This package is worth £44.99

And here is a pic of the star which we named, which we found really easily by following instructions found in the gift set

star

If naming a star after a loved on is something you would like to do, but feel this is perhaps out your budget, you can still name a star with entry into the registry, receive an A4 Star Name Deed, and confirmation letter from as little as £14.99.

Details of other packages can be found on the website

If you would like the opportunity to win an Extra Bright Star package just in time for Christmas, then you can do so by clicking this link

Winner will be announced on Friday 15th December at 5pm, and announced on Twitter and my Facebook page, then will be contacted for details which will then be passed on to Star Name Registry and used only for this competition

Good luck everyone and have a very Merry Christmas

 

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anxiety, asd, autism, dance, depression, diet, excercise, general, health, health and fitness, lifestyle, mental health, metnal health, post natal depression, special needs, wellbeing

Who am I and why do I want to volunteer with Tots & Tums?

I,m Louise, I’m 39, and I am a mum of three gorgeous children, and married to Andrew.

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Me and my youngest, Emily

When people ask me ‘what I do’ I’m never quite sure what to say. I mean it’s easy to tell someone you work in retail, or in education, or something along those lines, but I write, and I blog, and I probably use social media way more that society suggests I probably should.

But I do all of those with reason and my intentions are always to spread messages of positivity and hope for those who may need it.

I do this because I have suffered with mental health issues pretty much all my adult life. Once I hit 16, I went off the rails and spiralled into a life which I can see now, is not the kind of life any mother would ideally want their daughter to have.

I had my first child at 21, ended up a single parent at 22, got into relationships with the wrong kind of people, made bad choices, found myself in not exactly ideal situations, but luckily I decided to try and make something of my life by going back into education at 26 once my son started school.

I met my now husband just before I turned 30 and as I was about to graduate from uni, and from then I finally got my life back on track, or more or less. We had our first child together in November 2008, then our second child September 2011.

Our oldest daughter was diagnosed with autism in April 2015, and it was at that point I said I was going to change my life. I had answers now. I’d spent so many years anxious, worrying, stressing. We had answers, a diagnosis and I needed to move forward.

So I set about making changes to my life, little by little and I can say now that I am completely through my depression. I still have moments of anxiety, but I think we all do, and I am now aware of how to control them.

I started by working towards fulfilling my childhood ambition of becoming a journalist and signed up to a distance learning course. From this I pushed myself to travel down to London on my own to do workshops, then smashed another barrier by taking my first exam, and passing. I then made myself completely familiar with my surroundings and what is going on in the area, what’s topical? What do people want to read about?, and started writing feature articles for newspapers and magazines.

I then started blogging and sharing my personal experiences of being an autism mum and living with depression and anxiety. I then took up exercise and it’s through that which I’ve made so many friends. Which brings me where I am today…

Beating depression has made me want to help others beat it too. I want to find people who have lost their way in life, and help them find it again. But I don’t want to do it sat in an office, taking notes, or as an employee who’s able to listen, but not able to give advice.

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I want to do it as me. As the girl who woke up one day and decided to take her life back. I want to find men and women who have lost all belief in themself, lost their identity, lost their path in life. I want these people realise their self-worth, identify their dreams, break their comfort zones and achieve them.

I want to be someone who helps reduce the mental health stats which fill me with tears every single time I read them. I want to be someone who makes a difference to the world, I want to potentially save lives.

And I want to do it all by sharing my experiences of kicking mental health issues and give others the confidence and belief that they can do it too.

asd, autism, general, health, mental health, parenting, special needs

Today I hate autism and this is why

I like to keep my blogs light-hearted, positive and happy, as that’s pretty much how I feel most of the time. But I would be lying if I implied all the time, and that life with an autistic child is all rosy and I cope just beautifully. The truth is, it isn’t and I don’t.

Today I hate autism and the reason I hate it is because I took Jessica to a pop concert yesterday, and spent most of it completely choked up inside. It’s not often we’re around other kids. We rarely go to softplay, the cinema is virtually empty whenever we go, I doubt there are parents desperately trying to entertain their kids before 10am on a sunday morning, and Jessicas party invites are few and far between. Being in a class of only 9 children, and some of those children unable to deal with sensory issues a party brings, it’s not often she brings home any invitations.

It’s when I’m in a situation where I see other children, I’m overcome with sadness. Jessicas differences become more apparent, well more apparent to me. And it hurts

The reasons I hate autism are

1)  Four years in and I’m tired of having to explain Jessicas condition to people. Not friends, I’ll answer any questions they have at all, but strangers. Whether it’s some grump complaining about her behaviour (I got evil looks off a man trying to eat his lunch in a cafe last week when I was there with the girls, which I chose to ignore), or someone being friendly and talking to her. She won’t answer any questions she is asked, I answer for her. Then I feel the need to explain she has autism and doesn’t conversate well. It hurts so bad even hearing myself say that.

2) The whole ‘label’ or ‘autism doesn’t exist’ comments I’ve had thrown at me. It’s not a label, it’s and explanation, and trust me, it exists.

3) Apologies. People ‘apologising’ when I do explain Jessica has autism. But to be fair, I’m not exactly sure how anyone should act. I mean what else can you say to that little conversation stopper.

4) The assumption that people with autism don’t show empathy, or sympathy. Jessica knows when someone is hurt, and will tell me and her teachers in school. She may not run over and ask if they are alright, but she will alert someone. That’s empathy and genuine concern. She also gives the most amazing loving cuddles you could wish for.

5) Stupid damaging articles such as this one http://www.telegraph.co.uk/education/educationnews/11553012/Smartphones-making-children-borderline-autistic-warns-expert.html Talk about demonising autism and the very thought of having a child on the spectrum. Oh the actual horror!!

6) Attitudes and reactions towards my choice to stop vaccinating my children. I chose to refuse Jessicas MMR booster, and Emily hasn’t had a single vaccination since she was 16 weeks. I’m not for one second insisting the MMR is the cause of Jessicas autism, but I’m not saying it wasn’t either. I’ve spent a lot of time reading into this and concluded that I would be silly to allow Jessica to have a booster. How would I even live with myself if I had to then watch her regress? I’m not a neglectful parent, I’m a cautious one.

7) The feeling of isolation I experience every single day. Over the years I’ve lost all confidence and even refused to leave the house sometimes. I’ve missed opportunities to make friends at parent and toddler groups, and turned down meeting up with friends and nights out. How could I possibly have enjoyed myself when I’m experiencing such sadness at home?!

8) The assumption that I’m coping fine. Jessica is on the whole very well-behaved, so I must have an easy and quiet life, right? Wrong, I’m up at a time most parents only get up at at Christmas every single day. Jessica lives at a million miles an hour. She wants her breakfast the second she is awake, then her clothes on instantly, then her shoes. Meal times – she wants pizza, but she wants it now, she doesn’t have the patience to wait for it took cook, so I find myself repeating ‘wait, good waiting’. It’s exhausting both mentally and physically.

9) Milestones taking so much longer to achieve. I hate seeing other children become more responsible and mature than Jessica and I find myself wondering if she will ever even achieve some milestones. I feel consumed with guilt that I dread seeing Emily overtake Jessicas developement. What kind of a parent dreads seeing their youngest  child reach milestones??

10) I’m constantly ‘on alert’. I follow Jessica meticulously around a park, I avoid softplays as I’m constantly scanning the damn thing looking for Jessica, which gives me a headache. I’m terrified she may wonder off so I can not take my eyes of her for a single second. I go to bed at night aware I will up in a few hours, a few hours less than I want to be. I’m constantly waiting for the next meltdown. Not that she has meltdowns like you would expect, she’s just very anxious and crys over the littlest thing, then will apologise for crying and I tell her she has nothing to apologise for. The anxiety is becoming more apparent, I have to speak to her really gently sometimes and offer constant reassurance.

11) Not knowing Jessicas future. I heard the other morning that only 15% of adults with autism end up in employment. I’m guessing that is down to capacity to work rather than job opportunities. I am praying she is in that 15% I want her to live alone and independently. I want her to fall in love, and have children, and live a happy life. I want everything that my other two children will have.

12) The belief that autism is a ‘gift’. Really?! Jessica is a gift, all children are a gift. But I’d like to return the autism, please. It’s somewhat hindering my beautiful child’s development and distorting her understanding of the world

13) I hate myself for having all these feelings, but I am only human and I’m entitled to my own thoughts and the ability to voice them. But they don’t come guilt free. I love my daughter unconditionally, but today, and every so often, I hate autism

asd, autsim, parenting, speical needs

What followed Jessicas diagnosis

Three weeks ago, I received Jessicas Autism Assessment report. I’ve spent the time since then just kind of taking it all in and reading it over a few times. It’s 10 pages long, contains quite a lot of information and each time I read it I seem to pick up on something I hadn’t already.

I met up with the Clinical Psychologist and Autism Specialist nurse, who gave me some time to read through the report, which is quite hard to do when in someone elses presence. The pressure!  Obviously there was no pressure, but it’s a bit like being asked to provide a sample on demand during an anti-natal appointment. Your bladder refuses to cooperate, as does my brain sometimes. Some parts were quite upsetting to read, but I wanted to remain composed and deal with any feelings later on my own.

It’s not easy reading that during the school observation, the psychologist found that Jessica would sit next to, but not interact with other children, or that she doesn’t show any emotions other than excitement. Her ADOS assessment also showed that Jessica would only talk about items or topics she was interested in, and didn’t participate in to-and-fro conversation. I already knew all these things, but it’s different seeing them in print.

The report concluded that Jessica demonstrates a range of autistic traits in the areas of language and communication, reciprocal social interaction and stereotyped behaviours, reaching the threshold for a diagnosis of autism. Along with this, Jessica also has a learning disability.

After a few minutes I started to ask questions, after originally having non. After almost four years of reading up on autism, I kind of felt like a pro. I thought I would just thank them for their help and that would be everything done. But I needed to know how her future looks regarding school. I absolutely love her school and feel like I owe the world to the staff, but there is a little bit of me that remains convinced I could be taking her to the school just down the road myself some day. But the learning disability means that Jessica needs a visual timetable to get through a school day, she needs a quieter environment with minimal distractions to concentrate and visual aids to learn. She learns through seeing pictures rather than hearing words. Her needs may always be too high for a mainstream school. But I do mean it when I say I am absolutely fine with that.

I was also interested to know where Jessica falls on the spectrum. I didn’t really get a definitive answer. I think there is a preference not to classify as children can move about on the spectrum. But from what I could gather I think the general feel is pretty much mild, but almost leading into moderate.

The nurse then stared to talk about Jessica growing up and going through adolescence and how I might need help preparing her for change, and different stages of life. I know all kids need help with that, but more than a neuro-typical child. Something I hadn’t really given any thought to. And about how she is going to need to be taught skills which she doesn’t have or will ever come naturally to her. How to hold a conversation. How to act in social situations. What is and isn’t acceptable behaviour in public as opposed to at home. Just everything. Everything we do and our children do and we take for granted. I’ve pretty much got to manually programme my daughter in a sense. But with the help of support, books and any resources I can get my hands on, I can do it. I’ll do whatever I can to make Jessicas life as fulfilled, enriched and absolutely full of friends, as it should be.

asd, autism, general, parenting, special needs

So today we got a diagnosis

Today came the news I’ve been waiting for since january this year, and anticipated since january 2011. I’ve gone from fear and denial to acceptance and hope.

It was just over a year ago that we decided we wanted an offical diagnosis for Jessica. I know some people feel a diagnosis is a label, I did at first, but it’s an explanation. I want people to understand why Jessica is who she is, using just one word, and I want her to be able to do the same as she gets older.

A diagnosis takes time, and it wasn’t until January this year the process began. The four parts were all done in quick succession. The first part was a meeting with the Child Disability nurse where we talked about Jessicas development, then the second part, the ADOS assessment in school, part three involved the team meeting and talking with teachers, and observations. Part four, a meeting with the psychologist where we discussed Jessicas development, her areas of concern and family history. Everything was done the first week back after half term in february, and I’ve been waiting every day for a phone call to arrange a time to discuss the results. Every time the phone has rang I’ve answered it hoping it was about Jessicas assessment. I said I wouldn’t let the wait get to me, but it has.

The phone call came today. I knew it was the psychologist as soon as I heard a voice. She apologised for not being in touch sooner, as they’d been very busy. She said she would like to arrange a time to come out and discuss the results of Jessicas assessment along with the nurse. We arranged next thursday afternoon. My heart sank as I thought I’m going to have to wait another 9 days to find out some kind of conclusion. I thought about asking her what I could expect to be told, but I knew if she could give me any information over the phone, she would, so decided not to. But, she then went on to explain that she and the Child Disability Nurse will be meeting up with Jessicas pediatrician next week, and they’re going to tell her that Jessica does meet the criteria for a diagnosis of autism. The doctor will then give the official diagnosis.

She then kept talking, but I have no idea what she said, I was taking in that one sentence, the one I’ve waited four years to hear. I think I cut the phone call short by saying ‘ok, see you next thursday at 1.30’, hung up the phone and just stood there. It’s the result I’ve both expected and hoped for. It’s the only diagnosis which explains every aspect of Jessica. If I’d been told she didn’t meet the criteria, I’d have been disappointed. But it’s news you don’t ever really expect to be told, so it’s one of those situations where you can’t possibly predict how you will react.

I have had a few tears. I rang my mum to tell her, then my dad. I knew Andrew would be home in about an hour and didn’t want to have it on his mind driving home, so decided to wait to tell him. He came home, I told him and like me, he expected it but still felt slightly in shock. We told Callum, he gave her a cuddle and even actually asked if I was okay.

I’m not sad, I’m not upset, I’m not worried. I’ve spent too long being all of those things. I’m relieved, I’m content and I feel so incredibly lucky to be her mum. If it wasn’t for Jessica, I wouldn’t not only be writing this, but any blogs at all. I wouldn’t be the strong person I’ve had to become. My life wouldn’t be half as unpredictable and colourful.

So that’s it. My beautiful, smart, funny, clever, intelligent 6-year-old, who didn’t call me ‘Mummy’ till a week before she turned 4, who repeatedly asks the same questions, who is currently OBSESSED with shop names and clothes labels and will only wear clothes from H & M at the minute (not a fashion or brand thing at all, a logo thing), who tires me out with her sometimes 5am rises and extensive energy, who lights up my life like I cannot describe, has autism. And I’m so very proud of her

asd, autism, general, health, parenting, special needs

What April 2nd means to me

For many parents, today is the last day of term with one long weekend followed by two weeks to spend with their children at home. For me, it is that, and so much more.

April 2nd, is World Autism Awareness Day. A day I wasn’t even aware of until two years ago, and a condition I knew nothing about till 4 years ago. Today is about spreading awareness of a condition which affects 700,000 people in the UK, and taking into account their families, touches the lives of 2.7 million people, every single day.

If you’re reading this via Facebook, and you’re one of my friends, I know you’ll know what autism is. I’ve made my families journey with autism public for just over three years now. I’ve done it because I want to normalise a condition which I knew pretty much nothing about, as I’d never been exposed to it. I’ve done it because it helps me cope with the situation. It’s an outlet, it’s therapeutic. I’ve done it because I’m so incredibly proud of my daughter and I want everyone to know that disability does not mean inability.

But for anyone reading this who is unfamiliar with autism, it is a lifelong and disabling condition, which without the right support, can have a profound and often devastating effect upon individuals and their families.

Autism affects how a person communicates with and relates to other people, and makes sense of the world. Autism causes difficulty in three main areas, social communication, social interaction, and social imagination.

For me, it’s important to create awareness as autism can be described as an invisible disability. A child having a meltdown brought on by a variety of factors (light, sound, smell), can easily be mistaken for a ‘naughty’ child. I want my child to be accepted and understood. I want to feel supported, and not judged.

But most of all, I want EVERY parent of a child with autism to feel their child is accepted and understood. I want EVERY parent of a child with autism to feel SUPPORTED, and NOT judged.