NO it’s NOT okay!!

It’s been a hard week, work has been busy and I’ve been commuting a lot this week so I’m exhausted!

Mimi has been withdrawn, moody and hot headed for a few weeks with a lot worrying her. I can completely understand why the puzzle piece is used to represent autism because it’s a bloody puzzling head spin!

A couple of things have really got to me this week and I need to vent more then anything!

First off, Mimi has had a visual stress test this week and it’s been concluded that she needs coloured overlays for reading – not a problem (£20 per flimsy overlay but ok!) when it comes to writing or being out and about and lights affecting her senses it has been suggested that she has a machine test to formally diagnose irlens syndrome OR dyslexia, again not a problem

But it is a problem….

Can I find ANYWHERE to do this test?? NO!

The nearest place is 60 miles away (an hour each way for Mimi in the car – NOT okay) it’s £175 for the assessment, NOT okay – that’s more then a weeks worth of shopping Money and with so many outgoings it means I’m going to have to save hard for it!

Then, once Mimi has had the assessment she may need tinted glasses, ok simple right….

NO, Mimi has very strong prescription glasses and every time she has a new prescription (every 6 months for the past 4 years) we are going to need to pay another £50+ to have them tinted and that’s even if we find somewhere to get them done!

How is it this is not covered on the NHS??

Next bug of the week..

Mimi has been unable to complete work at school this week and been given it to bring home

NOT OKAY!!! Home is a time for Mimi to rest between school and our time as a family and Mimi goes to school – she is not homeschooled for a reason! Mimi has seen this as punishment, she gets extra homework whilst her friends can have a fun weekend! Her weekly homework causes many issues on a daily basis as it is!

If Mimi can’t concentrate in class then they need to address this and find out why, what adjustments can they put in place to help her? OR maybe just take a moment to ask her if she is ok….

Mimi wasn’t okay, later she told me that a friend of hers (so called best friend) had hurt her and got angry with her for having ‘easy’ work to complete and not the hard work she had, this upset Mimi – she told me so

BUT in Mimi’s words ‘it’s ok because she is my friend’ NO NO NO NO NO IT IS NOT OKAY!!’

It is never okay to hurt your friends!

Over the past few months this said ‘friend’ has made Mimi feel worthless on many occasions with little digs, put downs and psychically hurting her and it is not okay! Ever!

When trying to explain to Mimi that it is not okay and this child clearly isn’t a true friend Mimi has got very upset and jumped to her friends defence. She doesn’t see it and that worries me more than I can explain

Mimi can not grow up thinking it is ok for people to hurt her just because they say they are friends, I’m scared what this can lead to when she is older, really scared!

Not only has all the above been a nightmare this week, we’ve had the usual meltdowns, worries and despair with Mimi about everything from a cut in her mouth to the tiny little blonde hairs on her legs (BTW it’s not okay to have hairs on your legs and it’s definitely not okay to shave them.,, how are we going to get around this huh? Mimi is only 8 and we shouldn’t have this yet 😩) This beautiful little kind hearted girl has the weight of the world on her shoulders and I don’t know how to take it away from her, I really wish I did! I would give my last breath for my children, both of them and it pains me everyday to see Mimi so distraught over the things most people see as trivial.

It’s not all bad though, we have each other and that means everything will BE OKAY

I have finally finished reading the last book in my pile and nearly ready to blog my reviews so keep an eye out…


The Sunhine Blogger Award

A huge thank you to @mumsbbblog for my nomination, it’s only been a month of blogging for me to and I have been amazed at the support and comments I have received about my blog. Working full time, having two children one of whom with special needs and a house to keep, I am proud of myself for being able to find some time to write blogs to hopefully raise some awareness for a number of issues. This nomination means a lot so thank you so much

The Rules

1. Thank blogger(s) who nominated you for the blog post and link back to their blog.

2. Answer the 11 questions the blogger asked you.

3. Nominate 11 new blogs to receive the award and write them 11 new questions.

4. List the rules and display the Sunshine Blogger Award logo in your post and/or on your blog.

@mumsbbblog’s questions for me

1 Describe yourself in three words

Happy, analytical and tired haha

2 What is your most favourite blog you have written so far and why? Feel free to link in it below

This is a tricky one, all of my blogs are about autism, adhd and suicide. The suicide blog was the one I felt I needed to get out and it helped me come to terms with it more, my blog about the difference in girls and boys Autism was the reason I started blogging. My favourite I think would have to be the cheerier one about my little boy

3 What is your favourite animal and why?

Dogs, my dog in particular as he helps mimi in more ways then I could possibly ask for

4 Tell us about your dream job?

I’m already doing the job I always wanted to do, I would love to do it for myself one day and be a freelancer though

5 Why did you start writing a blog?

To raise awareness of autism and how it affects differently in girls

6 If you could live anywhere in the world, where would you go, and why?

I really would stay where I am, I’m lucky enough to have all of my family and my husbands family around us and that is by far the most important thing for me

7 What is your all time favourite film?

Forest Gump, got to be this!

8 Who inspires you?

My daughter and My son. Mimi deals with so much on a daily basis and OB really is my Hero

9 If you could be any celebrity for a week, who would you choose, and why?

Alan sugar lol I would love to dig into his empire and see just how fair it is ran

10 What aspirations do you have for your blog in the next 12 months?

I want to help people, if one person comes and says my blog has helped them with their daughter flying under the radar then I will be very happy

11 Finally, what do you think makes a good blogger?

life experience, I’ve been through a lot and I’m still standing ready to write all about it

I Nominate:












My questions for you;

1. What is your day job or role other then blogging?

2. If you could be prime minister for a year what one big change would you make?

3. How often do you try and blog?

4. Who is your hero and why?

5. What is the 1 possession you couldn’t live without and why?

6. Do you set yourself targets for words per blog or just write what comes?

7. What’s you favourite tv soap?

8. State 1 interesting fact about yourself

9. Give one childhood memory that still makes you feel happy when you think of it

10. What make of car would you love to have if money was no object

11. What is you favourite day of the week and why?

Have Fun xx

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.

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

Autism expert

Love this

Michelle Sutton

I saw an advertisement today that was promoting a talk by an autism expert, a man who has an autistic son. A few days ago I saw a link to the website of an autism expert who is a psychologist and researcher. Last week I saw a short video explaining autism made by an autism expert who teaches about autism at a University. The week before I saw series of infographics made by an autism expert who is an author and counsellor to autistic people.

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