My Hero, My Son

At the age of 4 my little hero amazes me everyday!

A carer for his sister, he may not help bathe her or dress her or brush her hair but what he does is equally as important

He sits with her when she needs a friend, he leaves her alone when she needs space, he sits and waits patiently for me as I spend so much time helping Mimi through her meltdowns, her homework, getting her ready and running over to her as she walks towards strangers

He never moans (ok maybe sometimes, but rarely) He takes it all in his stride

When Mimi kicks off because she wants to sit in the front of the car or when she takes over his toys, when she demands she gets ready first.. he doesn’t argue back with her, instead he says ‘it’s ok Mum, let her’ despite me saying that it’s not fair on him!

When he is hurt, Mimi panics and instead of him consoling himself or crying out for me to console him, you can hear him say ‘its ok Mimi, I’m fine Mimi, it’s ok’ through his whimper to calm her

OB is my Hero, he is an amazing little boy who cares for everyone including me when my fibro flares up

This little boy soon to turn 5 takes on so much more then your average little boy

So today and everyday I sit and reflect about how the day has gone and not only are the positives (and negatives) of Mimi’s day are thought about, I think about how much he has helped and I can’t help myself but go into his room and give him a little extra squeeze

On top of all he does at home, OB is shining at school, learning so quickly and coming home with stickers and certificates and never giving me jip when it comes to homework time

I’m proud of my OB (wan kenobi) today and everyday


“Typical” Autism in Girls & Boys and the differences

Disclaimer – This blog is based on my experience with Mimi’s Diagnosis and the assessments she went through. Not all Girls with Autism display the below traits and boys may show these traits too.

Autism is different in every child/adult and is not gender specific, the “typical” traits of autism tend to be more obvious in boys and more researched, its these typical traits that paediatricians look for when a child is being assessed and the ADOS questionnaire shows this. This leads to girls (and boys also) not being diagnosed quick enough and us parents feeling like we are going mad because there is clearly something going on but it can’t be autism because she is too sociable or because shes too verbal.

When Autism was first mentioned to me regarding Mimi, I laughed – don’t be ridiculous, she can’t be autistic because she speaks, she doesn’t rock and she talks to everyone and is very sociable and she doesn’t have a special “gift” with numbers or computers. How ignorant was I!?

I rattled this around in my head for a while and then spoke up to a friend who worked with adults who have autism and said I don’t think they are right, how can she be? Her response was “shes a girl!, girls go under the radar BECAUSE they mask it so well and are much more sociable then boys on the spectrum”

After the conversation, I done my usual. I googled! There is a few sites that explain how girls can present differently and from what I read it all clicked – they were right! My little girl was struggling so much more then I had ever thought and when I looked closely it was so obvious.

Mimi does speak – autism does not mean non-verbal and many girls with autism speak too much, normally about their interests and if your listening they will go on and on and on about them until the cows come home!

She does rock herself too, when you look closely you can see it. At the local playhouse I noticed her cover her ears when the loud music started, she sat on the floor and appeared to be rocking to the music but when I paid attention to her facial expression and the fact she had her hands to her ears it was clear, she was rocking because she couldn’t take the noise!

And she is sociable – but she has no boundaries and would literally go off with a stranger or invite workman up to her room!

She may not have a gift with numbers or computers but this kid could tell you the name of every pokemon, who they evolve into and what type of pokemon they are and where they typically live!

I threw myself into learning as much as possible. I answered every question on the ADOS questionnaire honestly and wrote a massive list of answers to go with the questionnaire – for example one of the questions was about her being sociable. I answered that she was meaning that she got a low score for this answer but I wrote on my backing sheet that she was way too sociable and explained about the strangers she had tried to walk off with (follow more like!) and how she would touch a strangers handbag in public if there was a shiny or fluffy keyring attached to it!

I was very lucky that our paediatrician read my notes and took the time to discuss them with me at length. He also has a lot of knowledge about how autism presents differently in girls and after just 2 assessments she was diagnosed. Mimi’s SENCO was one of the people who knew about autism in girls and she also knew that it was “normal” for Mimi not to show a lot of it at school but she took the time to get to know Mimi and like me, could see it.

This got me thinking though, if I hadn’t have been so proactive about learning about the differences and hadn’t of attached my backing notes with her questionnaire and made a point of discussing this with the paed then she may never have been diagnosed!

So for all those parents of girls (and boys) who are quirky or have unexplained meltdowns that want to know if their child could be autistic despite not showing the “normal” signs then here is a list of some of the differences:

• Schools tend to see the same meltdowns and difficulties that the parents see – with girls they tend to sit quietly at school and bottle it all up until they get home. This leads to the parent feeling like the child is only doing it for them and it must be their parenting that is the problem

• Boys have difficulty with peers and tend to play by themselves and avoid playing with other children, their interests are normally frowned upon by kids the same age – girls observe their peers and learn to mimic them in play situations, their interests are normally the same although more intense. Girls tend to be the ringleaders, need to be in charge and set rules, providing their friends go along with them there isn’t much friction (playing with younger children they can boss about is more likely)

• Boys can be more disruptive and aggressive when they are in mid meltdown whereas girls are more likely to withdraw and shut down leading to anxieties, depression and self-harm

• A mother is naturally more likely to have face to face discussions and play with their daughters then with their sons – this is subconscious and we are not doing it on purpose but it means girls learn more facial cues and expressions from an earlier age then boys and learn to mimic these.

• Lacking eye contact is seen more in boys, girls can often give too much eye contact and stare rather than avoid

• Boys are more likely to have language delays whereas girls are likely to have been advanced in their language and speech

• Repetitive behaviours are more common in boys than girls

• Boys tend to lack in imaginative play whereas girls will live in fantasy land with fairies, mermaids and unicorns

• It is more common for boys to line toys up, girls will organise and sort toys into categories

• The tone of a boys voice can be very flat, girls tend to be more high-pitched and babyish

• Empathy and emotion can be lacking in boys, with girls the slightest problem with another person can feel like the end of the world! Girls can show way too much empathy to the point of depression for another person

• Girls need to feel like someone “gets” them, when they are comfortable with that person they will discuss their anxieties and worries. If they don’t feel like anyone will understand then they will keep it all inside. This can become very tiring and lead to emotional outbursts when they are next with the person who gets them.

• The masking, mimicking and social pressures that girls often do/feel can be very overwhelming, they tend to spend their time directly after school on their own in their room in the dark or under blankets.

As I said at the start of the blog, the above can be the case for boys with Autism and not just girls. The point is the diagnosis assessments need revising! Our children need to be assessed on an individual case and the assessments should be more than a score on a questionnaire.

I will NOT apologise for being skinny!

Imagine this… a new Mum sits in-front if the fridge eating chocolate cake and crying 3 days after giving birth….. because she is gutted she has gone straight back to a size 6!

Yes that’s me…

From the delicate age of 5 I was prodded, poked and put through every test imaginable because I was ‘too small’

I gained weight but no where near as much as the doctors or parents expected, I ate like there was no tomorrow (and still do) and I’ve not once made myself sick – not even when I’ve needed to be sick because of alcohol!

Growing up I was bullied, called all sorts of names and mentally abused by my peers because I was small. I was followed to the bathroom at home, toilets at school and bathrooms in restaurants so people could check I wasn’t making myself sick. I tried so hard to put on weight, so hard to please my parents and dreamt of the day the doctor would say I was of normal weight!

At the age of 9 I was even bribed, if I gained 1 stone in the 6 months to my next appointment I would get £10 – like it was something I could just do!

I spent my teenage years angry at the world, angry at the models on magazines for trying to be skinny or for being accepted for being skinny.. why wouldn’t anyone accept my weight? Why was being skinny such a bad thing for me but what many people wanted?

After 8 years of appointments the doctor turn’t around (something I will never forget) and just said ‘well I guess your just naturally skinny and lucky!’

I couldn’t believe my ears – lucky! How the hell was I lucky after everything I had been put through? Naturally skinny – your kidding me right? I told you that when I was 5!

I was discharged just like that. No more appointments, no more of anyone checking up on me and given the contraception pill now that I had finally started my period as this ‘may help you gain weight’ I was 13! I remember the look my Dad gave me when I got home with my prescription, like I should be ashamed for being on the pill at this age- like I had a choice and was on it because I was sexually active (which I wasn’t!)

My heart broke that day, I hated my Dads dis-approval of anything.

As time went on, my weight still bothered me. It still does to this day.

I managed to find the love of my life when I was 16, he accepted me for who I was and what I looked like and he owned a restaurant – says it’s all doesn’t it, about how deep my issues was that I met someone by eating junk daily!

I didn’t just eat junk, over the years I’ve tried everything from eating healthy 8 times a day, eating 4 meals a day PLUS weight gain shakes, eating junk at least once a day, not eating any junk, going to the gym to gain muscle weight … everything! There’s no groups for people wanted to gain weight only for those who want to loose weight.

When my partner and I decided to get married I made sure I was 5 months pregnant at the time of the wedding so I wouldn’t look skinny in my pictures, I didn’t care what anyone thought of me for getting married when I was pregnant or if they thought that it was the only reason why I was getting married! I didn’t want to look like a heroine addict on my wedding pictures which is what I thought I looked like in photos.

Not long after our wedding, Mimi came! She was 8 weeks premature so I was discharged from the hospital a couple of days later with in SCBU, this is when it hit me! I got out of my pj’s and into my maternity jeans and they fell down! Put on my size 6 jeans in the hope that they wouldn’t fit and that I would have to go and buy a 10 or an 8 but they fit perfect, I was gutted! I sat in front on the fridge and ate a block of cheese and then went onto the massive chocolate fudge cake that was in there! My husband walked through the door and saw me sat on the floor in tears, stuffing my face and I cried – I cried a lot!

A few days later I popped into work to say hi and collect some bits as I had gone in a rush (actually in labour!) and the comment of a colleague made me worse. ‘Jesus Lou, how the hell are you looking so thin! You had surgery?’

I remembered back to when a celebrity had gone straight back to her normal size after having a baby and the jip she received, people saying that she must have had surgery and should have spent more time with her newborn then exercising! Who knows if it was true what they were saying but why does everyone assume?

I have spent so many years having people say things like ‘god, your skinny aren’t ya?!’ Or ‘your such a bitch’ – if I said to someone ‘god your fat aren’t ya’ I would be slapped! Why is it ok for people to comment on me being skinny when they don’t know me? I see new customers on a daily basis and get the same old comments and when it comes to lunch I get looked at, my plate gets stared at and the comments of ‘you look like you need fattening up’ come!

I know that I’m not the only one who feels like this, I’ve met a few people like myself who feel the same way. If just one person reading this realises that they make the same sort of assumptions and comments and thinks before they speak next time then I will be happy.

Being small has affected me in other ways too.. I’m too small to give blood (despite my blood being a rare type with rare antibodies) and it means any pregnancy I have has to be monitored which means water birth, home birth etc.. are out of the question.

I’m still not satisfied with my weight, I want to get to 9 stone and one day I hope I will get there even if it’s when I’m 50! I know my husband loves me for who I am but for me I want to feel comfortable to have a photo taken with my kids without deleting them after because I hate the way I look!

Happy New Year

So it’s the first day of 2018 – a new year and a new start 😊

At the beginning of 2017 I was feeling hopeless not knowing what if anything was going on with Mimi or how I could help her.

A year later and she has her diagnosis of ADHD, Autism and sensory processing disorder and we are starting to see a difference. Mimi appears worse, a lot of her traits are coming out but I truly believe that this is because she now feels more understood and comfortable. We now know more about her sensory likes and dislikes, her movement needs and her worries/anxieties but as a result of seeing all this and her being able to express it more we are seeing less meltdowns which is not a bad thing.

I have been on a massive learning journey, sensory, sleep and behaviour workshops at the local child development centre have really helped, the autism awareness diploma I put myself on also helped a massive amount yet there is still so much to learn, my focus for 2018 is to help Mimi with her worries and anxieties as well as her learning and academic progress. I don’t mind if Mimi doesn’t learn to read and write as well as her peers, I don’t care about grades or what job she may have when she is older, her happiness is so much more important to me but unfortunately her lack of progress and her being aware of how well her peers are doing compared to her is impacting her mental health.

2018 is also going to be a year of hard work when it comes to my full time job, new exciting opportunities hopefully 😊 My employers have been absolutely amazing with the time off I have needed for appointments, workshops and meetings for Mimi and I’ve been lucky for it to not have affected my job, my amazing review reflected this so I’m proud of myself for keeping everything going 😊

2017 was the year my husband became a stay at home Dad because of Mimi’s needs, it’s been tough financially and I have added more debt to my credit card as a result, my other goal for 2018 is to not add to it which will be hard but we will have to toughen our belts more! Now I have spent god knows how much on sensory equipment, weighted clothing, lights, clothes etc.. hopefully this year we won’t need to spend as much (she says with her fingers crossed!)

It’s going to be a good year, with my new blog, my newly found online support and a good healthy attitude

I wish everyone a Happy New Year, health and happiness xx