My ‘Rainbow Brain.’

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I didn’t even realise that my brain could be described as ‘Neurodiverse’ until almost a year ago. Even though I have always felt ‘different’ even as a child.

I have a Love-Hate relationship with my ‘rainbow brain’ as I like to refer to it! Sometimes I can be sailing along quite nicely, feel OK and confident and then BANG something goes wrong and the ‘red mist’ descends, and then I ‘explode’ like a volcano!

 

The reasons why I love my rainbow brain:

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  • Because I have finally learnt to embrace my ‘differences,’ rather than being a ‘sheep’ and copying what others say or do, I had spent so long referring to myself as ‘the weird’ girl, but now I rather be myself than a clone of others, or how people ‘think’ I should be.
  • Because I have learnt to ‘find my tribe,’ I have support groups online to thank for this, belonging to a group of ‘Mums on the Spectrum,’ where you can write anything and lots of people will report, relate and advise.
  • Because I have the ability to ‘hyper-focus’ on particular topics or interests, and I find a lot of joy in this. I love photography, seeing patterns in the environment and I love my ability to focus on research and study and the buzz I get from learning. I love finding out facts and information, which is something that I have carried from my childhood.
  • Because I’m completely dedicated to my children, I never thought I could think about 2 other people more than thinking about myself, I learn through my children and they’ve taught me to adjust from self-thinking and self-being, although sometimes I still find it difficult to tap into sometimes. My rainbow brain has the ability to tap into 2 girls who also have ‘rainbow,’ or Neurodiverse brains. I feel things like they do and see things like they do, it is hard to get this across to some people but I am trying!
  • Because of my brilliant and long term memory – I see everything in pictures and memories will crop into my head with the ability to see that scenario or event as it happened, the colours, what people were wearing, etc. I can remember a lot of happy memories from when I was a child. I also visualise people’s faces.

 

The reasons why I hate my ‘rainbow brain.’

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  • Because it allows me to ‘overthink’ I’d love to have the ability to ‘under-think’ (if that’s even a word!?!) I can have a conversation one day and still be worrying that I didn’t say something right 2 weeks later!
  • Because I find some people beyond confusing, I tend to respond well to people who are straightforward and tell me exactly how it is, people who are ‘woolly’ and don’t tell me things straight are confusing! People, including family members, have taken me off their Facebook friends list, I’d like to know why, if you don’t like me or I’ve done something to upset/annoy sometime I just wish they’d tell me straight, rather than just ignoring me and remaining ‘secretive,’ I like to know where I stand! If I know I can then deal with it and move on! Rather than just obsessing over it for weeks! Cue ‘obsessive personality!’
  • Because I have an obsessive nature and that I find it very difficult to ‘let things go,’ often obsessing for days, weeks, months, even years! If I feel ‘wronged’ about something I will go on and on about it! And this usually ends in me writing a long letter or email about how wronged I feel!
  • Because I HATE to be wrong! If I get ‘told off,’ or if someone doesn’t see things from my viewpoint I tend to argue my point and then shut down to avoid any sort of confrontation and then I get what I call ‘red mist,’ where I just feel angry and find it very difficult to calm down!
  • Because I don’t forget! Sometimes I wish I could wipe certain memories as they often come back in a ‘flash-back.’ I can remember the look on the faces of people who teased or bullied me when I was a child, I often focus on a negative feature that they had and wondered why they were teasing or bullying me when no one is perfect! Like the boy with the big, googly eyes, so big and starey that they could take over his whole head, the girl who told me I was ‘fat’ and needed a bra when I was 11, yet a tin of ‘Slim Fast’ fell out of her bag, and the boy who everyone seemed to love, yet had these big flarey nostrils that could almost breathe fire! I wonder if these people grew up to be the same, making themselves feel better through making someone else so unhappy? 
  • Because I find it hard to start a task and then find it impossible to stop doing it! Sometimes I will put something off and procrastinate but when I eventually get around to doing it, then find it difficult to leave the task unfinished! I often am up past 12am as I am a night thinker, however not so great when your children get up at 5am!
  • Because my brain can make me so paranoid, my brain has needed Cognitive Behaviour Therapy (currently on a waiting list for more,) counselling and life coaching. Sometimes life is hard and tasks and events that ‘Neurotypical’ people may find not so catastrophic, I find incredibly difficult. This is why I do look back and sometimes wonder how I’ve just been ‘allowed’ to go on and make many mistakes as I’m such a poor judgement maker and often feel judged for making the wrong decision, yet nobody actually guides me and steers me the ‘right’ way. 

However difficult things can be sometimes, I cannot change my rainbow brain, I just have to embrace it and use it to its best abilities and just try and learn coping mechanisms for those negative aspects. 

We survived! (Week 1 of the school holidays) 

Feeling a bit like ‘Bear Grills’ but armed with a visual timetable and taking a lot of deep breaths! We have ‘survived’ the first week of the holidays, (or ‘winged’ it!) 

We haven’t been very blessed with the weather this week (typical start!) And we’ve had to do a lot of indoor activities as both my girls are outdoor fans! We had planned to get out for walks and the park, especially to burn off energy but sadly, struggled. 

Keeping our fingers crossed for better weather next week! 

On Monday we established some house and outdoor visit ‘House Rules,’ where I sat with Lou and she helped to come up with some rules such as “we are safe inside,” and used the example of when she launches herself  off the furniture! 


If there is screaming at the top of her lungs (there has been a fair amount this week!) We refer back to the rules which she helped to create, I find that Lou does like rules and boundaries and the fact she helped to create them has given her back some of the control that she thrives on. 

Every morning Lou has arranged her visual timetable with what is happening each day, this has reduced some of the element of uncertainty and we refer back to it if she is getting anxious about what is happening next. 


The activities we have done this week were: 

1. Sensory Dough – we added some drops of Lavender oil to the ingredients, Lavender has been used in our house in the past few weeks in the form of burning oils and room spray as it has had a calming effect on both girls, especially Lou. I realise I had run out of blue or pink colourings to make the dough purple so we added orange instead! 


2. Rainbow Cookies – Lou loves the sensory element of cooking and used her rolling and cutting skills to make the cookie shapes, they came out quite big! 


3. Free-choice craft and ‘Shopkins Shaker Maker.’ Lou loves a bit of craft, I’ve always found it calming for her and her concentration improves, she thoroughly enjoyed painting her ‘Shopkins’ figures that she made from a ‘shaker maker’ kit she had for her birthday. Lou also enjoys selecting her own craft materials from our craft box and creating something of her own choice. 

Let’s see what week 2 will bring! 

Why can’t I just feel settled?

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So the best way for me to get my frustrations and anger out as usual is to write it all in a blog post! I’m sure I’ve been very annoying lately on my personal Facebook profile as I’m continually ranting about our current housing situation! This is because I feel so wronged and I’m trying to ensure that I do the very best for my children.
Some of what I describe in this post also relates to my current assignment for my course: ‘Understanding Autism,’ as I’m learning all about the legislation that protects people who are on the Autistic Spectrum.
I want to share this experience in the hope that other people do not have to go through the same.
One of the most surprising things about me is that I just can’t settle in terms of finding appropriate housing, considering that I’m going through an assessment for Autistic Spectrum Condition and I don’t usually cope very well with too many changes, I have moved house now 17 times since the age of 18! (This does include 3 different places whilst I was at University.) I am absolutely rubbish at making decisions, I never quite know what to do for the best, and it’s even harder now I have my 2 children to think about as their safety and happiness are paramount. My own mum describes my situation as the ‘fight’ or ‘flight’ method when things start getting tricky for me to cope with.
In the most recent of house moves, I’ve moved into the nearest city to be closer to where I worked but then the house got sold so we have to find somewhere alternative, we then moved into a new build flat in a local town but this was a first floor flat with no garden so Lou really struggled to burn energy and I was struggling so much with getting 2 children and a pushchair down a flight of stairs. We then found what we thought was the perfect house in a village location, complete with village school, park and green space 5 mins walk and my parents 5 mins away via car and walking distance to the nearest town, (well it takes me 40 mins, and I’m used to this as I walk everywhere!)
We had no problems really at all for the first year of living here, until around 6 months ago the neighbouring house (that’s attached to our house) became overcrowded. A house full of adults and confrontational ones at that! People lost jobs, being in a confined space and presumably bored, they argue and swear at each other constantly. They swear, every other word, loudly in the garden, Lou is currently being assessed for Autism, if she hears new or different words or phrases, she will copy and repeat over and over. I guess I am old fashioned in my views, but I simply cannot have her going into school and repeating phrases that I didn’t hear until I started high school! They also fight, and shout in the street, a month ago a fight broke out and someone banged my door very loudly, frightened that someone would get hurt I did call the police but they seemed to be talked down as seems the case a lot of the time, sadly. As I have described before in many previous posts, my eldest daughter Lou, displays a great deal of PDA traits (Pathological Demand Avoidance) and also ADHD, her high anxiety causes her to become very frustrated and often volatile. By hearing confrontations only meters away and through our walls, this is saying to her ‘it’s ok’ to be like this, whilst myself and Lou’s daddy are doing everything in our power to keep her calm and practice relaxation techniques.
There is 0 respect and 0 consideration, these people are disrespectful to all of the families in our row of houses, they stand in their garden after 10pm at night and have very loud conversations right under the window where my 2 girls sleep, often waking them up. When you have 2 children that find it difficult to fall and stay asleep this is beyond frustrating! But my voice is a lone one, no one else seems to back me up, bar one other resident, possibly in fear of repercussions. Since we started experiencing issues with these people we’ve had 2 visitors to our house – my parents – this tells me that we are being isolated even further than we already feel, and this causes me so much stress at the moment, especially as I feel that my children can’t invite any friends to our house. Oh and I forgot to also mention the Cannabis fumes that float into our home on a daily basis so much that we cannot have our patio doors or the girls’ bedroom window open as the rooms would fill with the fumes.
Oh and one of the most difficult things for me to get my head around is that the lead tenant of the household works in a local school in an Autism base! Surely this person should realise the effects of Anti social behaviour on people on the Autistic Spectrum? You would think? I certainly would want my child going to this school! At the very least I would have thought that this person should be aware that both of my children are very wary of loud noises.
So the housing agency we rent from asked me to keep an ‘Anti-Social Behaviour’ diary, which I have done since March 2017, like I haven’t already got enough on my plate! And just in case I may be making it all up! Then cue a visit from our local housing warden, which I have to admit was the most awkward interaction that I’ve had for a very long time!
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The ‘warden’ (as I’ll refer to this person as for the purposes of this post,) proceeded to tell me that my complaint was “far too long” that I’d written about what we’ve been encountering as a family. The Warden sarcastically (I think) said that:
“By the time I’d printed off your complaint everyone else in the office had gone home.” On another day I may have found this funny, but not today when we were talking about a serious situation. So for the rest of this part of my post I will bullet point how helpful the ‘warden’ was.
(I did try and explain that I’m a blogger and writing is what I ‘do’ and that people on the ASD spectrum will often include all the details they know in fear of missing something out, that could be a vital piece of information.)
  • 60% of the conversation we had over the span of an hour was filled with jokes, everyone needs a laugh now and again, but again, for a serious matter I found it difficult to understand the warden’s jokes, and by the time my mum had explained them to me, they were far from funny! My mum (sitting in on the conversation, and glad I preempted this,) attempted to explain that “my daughter doesn’t always understand jokes.) But no – unfortunately no understanding there.
  • “I’ve had much worse” and “other people have it much worse than this.” The Warden, in an attempt to make me feel better about the situation unknowingly made it worse! By proceeding to tell me that “only last week someone tried to kill me.” And that “in other areas they have it much worse than this.” Leaving me with the feeling that I don’t really wish to stick around to allow it to get this bad! For me it is difficult to see the outer world when I’m under great stress in my little world – within my family and surroundings, it may be the case that situations are much worse in inner city areas, but we are based in a small village and I didn’t feel that my situation and feelings were taken seriously, I didn’t need to have the worry placed into my head about how worse it can get.
  • The warden referred to ‘my anxiety’ and ‘seeing things differently,’ which, yes I do, but I felt belittled in the situation that I feel very unhappy about, I don’t think any family with young children should have to put up with such anti-social behaviours, regardless of whether they have anxiety or not.
  • The warden said directly to me: “What have they done?” I referred to the 2 sides of A4, (the ASB diary,) that I’d been asked to keep, so I replied: “Here, it’s all written down.” To which the warden replied: “No, what have they done to you?” My mum had to explain that the warden meant physically, what have they done, but physically I haven’t been attacked, why should it even have to reach this point? I cannot even stand to have other people, (other than close family members,) touch me, let alone stay around long enough to let anyone physically attack me, the warden said that the only way an ASB complaint would be taken seriously was if I was physically attacked! How could the warden even put this in my head that this could happen? Making me even more fearful. So banging loudly on my door and running away and having confrontations in the street shouldn’t be taken seriously? What about intimidation? What about the mental affects? It doesn’t always need to be physical.

Now I refer to the legislation that I’m currently learning about in my ‘Understanding Autism’ course, I am very grateful I had my mum present during this meeting to act as an advocate, to aid my understanding and decipher the ‘hidden meanings’ and sarcasm that this conversation was sadly full of. After this interaction I have since learnt that:

The Autism Act 2009: “informs local authorities, what actions should be taken to meet the needs of individuals with autism living in their area.” It states that local authorities:

“should provide autism awareness training for all staff.” 

(Source: NCFE Certificate in Understanding Autism Workbook 1.)

If the warden had this awareness training then they would have known:

  • Not to fill 60% of time out of the hour with jokes.
  • Not to criticize the length of complaint given.
  • Not to state what is happening in the cases of people outside the immediate environment.
  • Not to use anxiety as an excuse for experiencing problems with the housing situation.
  • To listen and be respectful and be careful not to put extra stress onto the person via ‘hidden meanings’ in the conversation, to use clear and concise questioning.
  • Not to use sarcasm in the conversation, as it can make the person feel belittled and will shut down.
  • That people with ASD are often affected by loud noises, such as people shouting and confrontations.

 

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People with mental health difficulties, and disabilities, such as ASD/ASC experience this sort of lack of awareness and understanding everyday. I want to do my best to combat this so that other people don’t have to experience the same as what I have.

And I still don’t know what is happening with the housing situation, we have a view to move, even though we are not the ones causing all of the issues, but I will do everything in my power to keep my children safe, there is also the issue that Lou is finding sharing a bedroom with her younger sister difficult and should really have her own specified space to allow her to calm in her own environment and Moo should have her own room as her ‘safe zone,’ where she can retreat to if Lou is having a ‘sensory overload.’ The uncertainty is unnerving, but watch this space.

Chewigem Toy Remote

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Using the Chewigem toy TV remote. 

My eldest daughter, (5) has been using Chewigem products for over a year now, she has the purple Eternity necklace and light blue twister bangle (Chewellry.) She has used these products because she gets very anxious about changes to her routine and often needs reassurance, she picks away at her nails and the Chewigem Chewellry items help to keep her calm, she even takes these items into school.

“CHEWIGEM® is a UK based, chewable jewellery designed to meet the needs of those children and adults who need to chew. CHEWIGEM ® is a non toxic, stylish and effective at meeting this need.”

Source: https://www.chewigem.co.uk/our-story/

My youngest daughter (2) displayed a need to chew from a baby, she has always been an oral seeker and will get distressed if her dummy is taken away, and her item to chew removed. From the age of 18 months, she began eating inedible items such as mud, sand, chalk, stones and playdough. In June 2017 we shared our concerns with a health professional and she is now being assessed for Pica (“Pica is characterized by an appetite for substances that are largely non-nutritive.” Source: https://en.wikipedia.org/wiki/Pica_(disorder)

I was therefore keen to try an alternative item that was safe for her to display her need to chew. I wondered if my daughter would respond to the same items as her older sister with the Chewellry, however she wasn’t keen. My daughter likes to chew on our TV remote so when I discovered that Chewigem offer a Toy TV remote, whilst visiting the Chewigem stall at The Autism Show, I wanted to give this a try. The toy remote is:

“Made of the same soft, flexible non toxic, washable silicone as all our stuff. Ideal for those who will not tolerate a necklace or a bangle being worn. Robust items that can withstand moderate to aggressive chewing.” 

Source: https://www.chewigem.co.uk/product/toy-remote-chewigem/

 

We have noticed that our daughter had taken to the remote straight away and even used it as a pretend phone! So far we have also noticed a reduction in the amount of dummy use and also the amount of inedible items being put into her mouth. I recently found that you can buy an attachment that can enable the chewy remote to be fixed to a pushchair, etc.

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I would highly recommend Chewigem products to anyone.

You can order Chewigem products through Website: www.chewigem.co.uk 

You can also visit the Facebook page: https://www.facebook.com/chewigem/

 

Thanks for reading.

 

 

That magic ‘driving key’

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I grew up believing that to receive your driving licence is literally like being given a ‘magic key,’ to a different world!

I was under the impression that it was essential for everyone to hold this ‘magic key.’ At times when things get a bit tricky at home, usually after one of Lou’s violent outbursts, I get the big feeling once again of guilt, that my children aren’t getting the same experiences to other children, who’s parent’s hold that all important magic key! In reality even though kind people, who are attempting to make me feel better, have mentioned to “just get her out” in terms of avoiding the behaviours that Lou displays at home. Other people have been astonished when I mentioned that both myself and Lou’s father do not drive, “Really, so you both don’t drive?” This is becoming one of those posts where I feel that I have to ‘justify’ myself, but I’ve had to explain this so many times, and until recently I didn’t even know the true meaning as to why I find driving so difficult. or openly wish to admit it to people, as this feels like yet another failure on my part.

The bottom line is, even if I did hold this ‘magic key,’ I really don’t think I could still take both of my kids out unaccompanied! In public places, Lou experiences ‘sensory overloads,’ this means that she may likely throw herself down onto the floor (anywhere) and I have to calm her whilst also keeping an eye on a toddler who also experiences sensory difficulties in terms of noise in busy places, such as supermarkets. Then whilst all of this is going on, and there a lot of noise, people staring and tutting I then start getting very anxious and the lights are bright and then before we know it I’m having an overload and want to immediately run for the door and get out! There’s also the issue of getting to and from places, with Lou who likes to kick into the back of the car seats and poke and pinch her younger sister, I have visions of having to stop frequently along any journey to prevent her from an outburst, which would mean that safety would be compromised, not to mention that to properly concentrate I cannot cope with any noise in the car! More of this to come in a minute!!!!

I always have told people that my reason for not trying to obtain the ‘magic key,’ was due to an accident that I had with an arctic lorry when I was in a learner car when I was 17, yes this is 100% true and I am very anxious with being on the road, especially when I see lorries, however I have recently had another ‘light bulb’ moment in terms of why I find it so difficult being ‘in charge’ of a car.

  1. I’m not great with demands! (I wonder where Lou gets this from?!?) Driving is one huge demand with lots of underlying demands, with an instructor sat next to me and ‘telling me what to do,’ I often felt like saying to them: “Just shut up!” (Whoops.) This causes my brain to go blank, just like when someone gives me a maths problem to solve, my brain goes into ‘fight’ or ‘flight’ mode and will shut down and go completely blank. (Dangerous behind the wheel.)
  2. I have been experiencing a great deal of ‘visual stress,’ over the past few months, resulting in pain around my eyes and headaches, I think I do need stronger glasses and I’m attending to this, this week. However I recently found out about ‘Irlen Syndrome,’ and it was like another ‘light-bulb’ moment! I’ve been experiencing many of the symptoms of ‘Irlens’ since I was a child and have just presumed that everyone sees like this! (Whoops,) when I was 11 I complained about not being able to see the information on the new class ‘Whiteboard’ and that I could see better on the good old-fashioned ‘blackboard,’ so what they did was to move me closer to the board, which if anything, made it worse! It was, in fact, the brightness and glare of the whiteboard that I was struggling with. Looking back on every photograph taken of me outside, I am squinting and finding it very hard to see and keep my eyes open, my eyes hurt when I’m trying to concentrate in full sunlight, sometimes I find it more comfortable to even wear my sunglasses inside the house! I also turn off the lights and sit in the dark and pull curtains across to avoid the sunlight! I turn my laptop screen to dull white and my phone now has a light green, instead of the white background. If I’m in bright sunlight, especially when on a driving lesson, I will be affected more by the brightness that it would create coloured shapes that move across my vision and leave an outline of objects even after they have gone out of sight. It is difficult to judge spaces and judgment becomes generally out-of-sync. It is therefore most likely why I’ve previously described being in control of a car as ‘like someone else is controlling it, and that I go into a trance-like state.’

You can read more about ‘Irlen Syndrome’ here:

http://irlenuk.com/irlen-symptoms-overview.htm

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3. I cannot afford lessons, a car, MOT, Tax, petrol, etc!!!! Money is extremely tight, more than ever as we are ‘one-parent who works,’ household currently, whilst I am available for my 2 young children when they need me most. Any spare scrap of money goes onto essential items for the girls, such as clothing and specialist items, such as sensory toys and equipment to support their sensory seeking behaviours. It would take a lot of money to get that ‘special key,’ and I may also yet require special lenses for my glasses depending on the outcomes of assessments I’m looking at in the near future.

4. I just don’t understand!!! On the surface I may appear to understand, usually giving a polite nod, when underneath the surface it’s like I’m frantically trying to tread water! I am an visual and kinesthetic learner, I learn by seeing and doing, via trial and error, unfortunately with driving you cannot always use the trial and error method! What I should have been completely honest about when people ask me why I don’t drive is that I’m actually being assessed for an ‘Autistic Spectrum Condition,’ (ASC,) which until recently (and a change of term,) I would have been most likely described as having ‘Asperger’s Syndrome,’ and as I have written in my latest essay: “People with Asperger’s Syndrome, can speak in sentences, however their understanding of what is being said and understanding the context can be limited.” I’m pretty sure that most of my early language was either repeating phrases I’d heard (known as echolalia) and talking about my ‘special interests,’ and as I’ve come into adulthood, pieced it together a bit in the middle! In my own words, on the surface I can appear to ‘talk-the-talk,’ but actually fully understanding what I’m saying in a different ball game! So when my old driving instructor used to tell me that when doing a ‘3-point-turn,’ that I needed to look at the angle of a particular object in the mirror, I had no clue what he was actually on about!

4. Lou’s Daddy can practically drive, he has awareness of the road as he’s been riding a moped for a number of years, however, to gain his ‘magic key,’ he would have to pass his all important Theory Test, and this, at the moment would be like mission impossible as we are looking at getting him officially tested for Dyslexia. We recently accessed his medical records (which is a whole different story!) But even though we believed that he has Dyslexia, there is no ‘official’ diagnosis anywhere in his medical history (those good one 1980s again!) He has taken the theory test with the aid of headphones and someone reading the questions to him, but he’s still struggled. So between us we are a right pair!

 

Every time someone offers me a lift, I feel guilty and like I have to justify why I don’t drive, every medical appointment I have to explain how I have to get there via public transport and I cringe every time one of my girls gets an appointment and it’s not near a bus or train route! However, I do need to stop the guilt trip and remember that not absolutely everyone needs to untimely have that ‘magic key,’ as there may be varying circumstances, and I need to remember that what I can offer my children, is my time and a whole 13 years worth of activity ideas.

Thanks for reading 🙂

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Spectrum Sunday

Piece I wrote for my High School Alumni page

I recently wrote a piece for my old high school’s Alumni page on the schools website. This detailed the journey I have made since I left high school:

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Attending the ‘Autism Show’ at Birmingham NEC, June 2017. 

Pershore High School Alumi

Nicola Perrins.

I took my GCSE’s at Pershore High School in 1999. I then went on to study for a GNVQ in Health and Social Care at Pershore Sixth Form, and then onto the University of Worcester to study Primary Education with a specialism in Early Years, where I graduated in 2004, and later returned in 2010 to complete my Early Years Teacher Status (EYTS) qualification.

I have worked in the Early Years education sector for the past 13 years, including schools, nurseries, after school and holiday club provision. My first job role was working in a large Infant school in Norwich, Norfolk and my last role was based at RGS Springfield (Worcester,) at their onsite Nursery.

Since having my 2 children in 2012 and 2015 my career path has taken a slightly different route, with my love of childcare and education still at the heart. I have always been passionate about writing and In March 2016 I started a blog supporting parents who have children with additional needs. I have written posts for local newspapers and write a monthly post for a charity that supports families who have a child(ren) with disabilities. I like to use my own photography for my blog posts. I also have social media accounts that accompany the blog.

In September 2017 I became a self-employed to carry out music, movement and sensory sessions with Early Years children in the local area. My plans for the next year, before my youngest child starts school, is to take up a volunteering role at the local children’s centre, whilst completing online distance learning courses in Understanding Autism, Understanding Mental Health and Counselling. I hope to gain more experience in working with children and families.

In the future I hope to compile my own book to support parents who have children with additional needs and I also have an idea for a children’s book. I also hope to attend my first blogging conference.

300 word piece I wrote for Worcester News – ‘Mum’s World.’

I recently wrote a piece for my local newspaper on parenting children with additional needs. The passage I wrote was for a coloumn called ‘Mum’s World,’ which is lead by Siani Driver who formed the 5,550+ strong ‘Worcestershire Mum’s Network,’ group on Facebook.

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Parenting children with additional needs.
 
When I found out in April 2016 that my eldest daughter, (then aged 4,) had additional needs, I admit I was struggling, I was at a loss and felt completely hopeless. I also felt very alone. You worry about your child’s future, you worry about if you did anything to contribute in the past, you may even sometimes hear comments such as “it must be your parenting skills.” 
You can hear tuts and people stare if your child is having a ‘meltdown,’ in public.
You fight for your child to be heard and for their needs to be supported, especially if your child presents differently at school to what they do at home, where they feel most comfortable and with the people they feel most comfortable with.
 
In March 2017 I decided to start a ‘Blog’ to share my thoughts and share experiences with parents who may be going through the same thing.
 
Linking up with other parents who just ‘got it’ and joining online support groups has been my salvation, I’ve been to coffee mornings for parents to chat and also ‘meet-ups’ where the children are invited along for picnics, adventure parks and boat trips. 
 
From September 2017 I’m going to be volunteering at my local children’s centre and helping to run a local support group for the parents of children who have additional needs. 
 
When I recently noticed some ‘sensory seeking’ behaviours in my youngest child, (now 2,) I shared my concerns with our health visitor and she’s now been referred to relevant professionals, I now understand that it is best to share concerns, the earlier the better, to ensure that the appropriate support is given. 
 
I am always happy to answer any questions from other parents via my Facebook page: 
Or via my blog email: 
sensorysensitivemummy@outlook.com
 

Special Interests 

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Whist completing my first assignment for the distance learning course I am doing on ‘Understanding Autism,’ I was reminded of the term ‘special interests,’ some may refer to this as ‘obsessions,’ but I prefer special interests.

“Autistic people often have an intense and passionate level of focus on things of interest.”

From: Autism Wiki

One of the saddest things I’ve ever heard was a child being told that they should stop talking about their special interest. As a person who had special interest themselves as a child, I do my best to engage with my children’s special interests.

“Parents are encouraged to support their child’s interests.[6] While special interests may seem strange or random to outsiders, they are incredibly meaningful to the child. They provide a source of recreation, allow the child to develop competence in a certain area, provide a safe haven during times of stress which assists in avoiding meltdowns and sensory overloads, and improve self esteem.”

From: Wiki Special Interests

I wanted to sit down next to this child and say: “I’m listening, you tell me about it.”

When I recently attended ‘The Autism Show’ at the Birmgham NEC, I heard Lana Grant speak on the topic of ‘Girls with Autism,’ Lana founded the Facebook group called ‘Mums on the Spectrum,’ and has written her own book called ‘From Here to Maternity – Pregnancy and Motherhood on the Autism Spectrum.’ Lana spoke about the ‘special interests’ of Autistic girls and that these particular interests may be similar to those of a neurotypical girl, e.g. horses, dolls, princesses.

Some people refer to special interests as ‘obsessions,’ personally I prefer the term special interests, some may tend to look on special interests as a negative thing but I see them as something that makes people on the autistic spectrum happy and focused. Some people may even go on to use their knowledge and passion for their special interest as a career. For example, Alan Gardner, a garden designer who uses his passion for patterns and shapes and incorporates into his garden designs. He has a TV programme called ‘The Autistic Gardener.’

Lots of people collect things and have particular hobbies, however, my own description of a special interest is something that is difficult to stop thinking about and something that you like to talk about in great detail. Some people like to hear what you are describing and some people don’t! For me if I saw an item that I was collecting I would just have to have it and I couldn’t walk out of a shop until I had bought it, I will describe my collections in more detail later on. Sometimes, this can be difficult if you are spending a great deal of money on your special interest, such as my interest in craft materials for scrapbooking and card making, I have 100s of pounds worth of materials and I found I spend the majority of my money pre-children on these items that are now sat upstairs and hidden away in boxes as I just don’t get the time to sit and do crafting these days, with looking after 2 lively children!

I recently wrote down over 30 years of my own special interests and there has been many, some have lasted from my earliest memory from the age of 3 until the present day, I had an imaginary friend, a fairy called Tinkerbelle when I was 3 years old, I collected fairy statues and items until the present day, where I have restrained myself from buying anything else, but I have kept a few of my favourite figures on display at home and I have a hand-drawn framed Tinkerbelle from Disney Land Florida. A great deal of my special interests may have been shared by other young girls or teenage girls, but there has been more obscure ones, such as my love of smelling paper! I have always loved the smell of books and magazine, glossy magazines are my favourites, I also love the smell of libraries with all those books! I still do this today and my favourite thing to smell is the Next Directory Catalogue!! I love the smell of new things in general, especially new clothes before they have been worn, there was a time when I had a slight obsession (and it did turn into an obsession,) with buying new clothes from Primark, a cheaper range shop, but still not great for the bank balance! And in contrast these days I don’t buy clothes for myself, it is now for my 2 girls! Another special interest that spanned many years was collecting dolls, it started with Barbie and Sindy dolls, and I had 100s and then around the age of 12 I started to collect Porcelain dolls and these also went into the 100s, I had to clear some out and de-clutter once I had my children so I only have kept 4 of my favourites.

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Here is my timeline of special interests spanning 30 years: (That I haven’t already discussed.)

  • ‘Polly Pockets’ small collectable characters inside their cases for their homes. My mum kept these and Lou now plays with them when she visits my parent’s house!
  • From age 8 – Dolphins, watched films, collected ornaments, books, learnt facts about them.
  • Trolls! Ironically the original late 80s/early 90s Trolls figures – small, large, various themes and makes.
  • When the film ‘Jurassic Park’ first came out in 1993, I was 11 and interested to find out about why the Dinosaurs became instinct, so I researched via enclopedias and leant many dinosaur names. This is where my love of all ‘facts’ began, which carries on to the present day. I have collected many Guinness Book of Records and use Wikipeadia and Google a lot to find out things. I also have to know if I’ve seen a character from a TV programme from somewhere else and I will have to find out or it would bug me!
  • At around the age of 14 I started to collect stamps, I have no idea where this collection went, but I had a lot! I also became interested in collecting Fifa Football stickers for the sticker books and Match football magazines, even though I couldn’t play football, I was awful in defence! I had a season ticket for my dad’s favourite team and became interested. I still, to this day, do not understand the off-side rule!
  • I can’t quite remember which was my first pin badge, but I collected 100s and placed them onto 1 particular bag, when visiting somewhere for the fist time, I couldn’t leave without buying a pin badge to represent the place I had visited.
  • Whilst at University I discovered the book ‘Harry Potter and the Philosopher’s stone,’ I read the book to a class of year 4 children and then went and bought the book myself. I couldn’t put any of the books down and saw all the films at the cinema when they came out and I have the whole DVD collection. Lou isn’t ready to watch the first film just yet, she watched some but isn’t keen on ‘Fluffy’ the 3-headed dog!
  • I got into collecting precious stones after I read about ‘Crystal healing,’ I bought books and magazine subscriptions, my grandmother’s name is Ruby and this is why I named our first child also after a precious stone.
  • I watched the ‘Lord of the Rings,’ films, read the books, designed costumes.
  • I’ve loved musicals since around the age of 4/5 when my nan first introduced me to ‘The Sound of Music,’ although very quiet as a child, I liked to tape myself singing to songs from musicals such as Grease and Evita, but would be mortified if anyone else every played my tapes! I joined the school orchestra at 9 and choir at 14, also playing the flute. There is something that stirs my emotions when I hear the songs from musicals, when I first watched Les Miserables I was very emotionally overcome after hearing the songs for many years previously. My passion for music has carried on until the present day, I am calmed by classical music and I became a self employed music lesson leader for early years children in September 2016.
  • My most recent special interests are, programmes such as ‘Game of Thrones,’ I have watched seasons 1 to 5 through beginning to end now 6 times, and season 6 though twice. Certain amazing episodes I have watched 3 times in a row! The music, the costumes, the fantasy – dragons, Direwolves, giants, Children of the Forest, the history – something else that I’ve always been interested in. I have read extracts from the Game of Thrones Wiki and if I see a character from GOT in another programme I will immediately recognise them. I was very close to calling my 2nd child Arya, after the GOT character ‘Arya Stark,’ one of my favourite characters, she was also almost called ‘Daenerys,’ after my other favourite character! Both these being very strong and fierce female characters. My youngest daughter is actually named after the actress that plays Arya Stark!
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Lou aged 4, “I’m reading your story mummy.” (A good job she couldn’t read at this point!)
  • Blogging! And writing! I have always loved writing, I found the physical formation of letters and joining up words very difficult in school, I had intervention lessons to help, It wasn’t until I went into teaching training that I actually learnt how to properly form some letters! I wrote my first book at 11 years old which is collecting dust somewhere! It was when I discovered word processing on computers that my love of writing grew even more, I could get what I wanted to write out without worrying too much about the spelling or formation of my handwriting. I used to write essays and my sixth form tutor would refer to them as ‘War and Peace,’ which I didn’t actually understanding the meaning of until a few years ago!!! I enjoy the feeling of putting pen to paper and also the sensory feedback of typing on a computer keyboard, the sound and the click! I started my blog in May 2016 and I hadn’t even heard of blogging before! I find that writing is my therapy to get things out of my head, from repeatedly swimming in my thoughts! Whether or not people read my blogs doesn’t bother me too much as it’s more like therapy for myself. So far I have written over 100 posts. I also love social media, I like to interact with people, especially like-minded, and I don’t have the anxiety of actually talking to someone face-to-face. Sometimes I can become obsessed with social media and I can also get jealous sometimes that my life isn’t as rosy as other people’s so there are times when I do have to give myself ‘time out’ from social media.

 

Enough about me! These are my children’s current interests:

Moo is currently 2, it’s so early to tell if she’ll develop particular special interests but I can already see that she is fascinated by shoes! She gets all of the shoes from the shoe rack every morning and tries them on, she also shows everyone we meet her shoes, and looks at the shoes that people are wearing when we are out and about. She can also tell me along the washing line which particular item of clothing belongs to which member of the family, “Daddy’s, Mummy’s….”

Moo is also into ‘Bing’ Bunny from CBeebies, she will now say ‘Bing’ loudly when she would like to watch it, and if I’m not quick enough to put it on she’ll shout “Bing, Bing!” Moo has also recently got into trains and tractors, she loves wheels. She enjoys our weekly train journeys and gets very excited when she can see the train pulling into the station!

Lou’s special interests are already more defined, I first noticed her love of water from 18 months old (even though to this day she despises having her hair washed!) She used to stand at taps and let the water run through her fingers and along her arms, she would like the feel and sensory feedback of pushing her fingers up against the taps, resulting in bathrooms flooding at her childcare setting! Lou is interested in and gets very absorbed in any sensory, or messy play experiences, textured paint, bubble mixture, even if its food and not a particular sensory activity, for example, she will tip out yogurt onto the table and move it around with her hands in circular motion and tip out jelly onto the floor and move it around with her feet! She enjoys feeling the texture of various materials with her feet.

Lou got swept away with the Frozen film phenomenon at the age of 3, books, singing the songs from the soundtrack, watching the film many times in a row, many days on end! She had the character dresses for ‘Anna’ and ‘Elsa,’ and even though her interests have moved on since, she still likes to put on her ‘Anna dress,’ and will say to Moo: “You can be Queen Elsa and I’ll be Princess Anna.” She would also only answer to her name as ‘Princess Anna’ at one point! Lou had to have absolutely EVERYTHING Frozen, dresses, T-shirts, underwear, bags, purse, pencil case, colouring books, dolls, you name it!

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From the age of 4 onwards, Lou discovered ‘You Tube Kids,’ she started by watching videos of ‘Surprise Eggs,’ with someone unwrapping an egg with a mixture of toys inside, with just the crackling sound of the unwrapping, someone’s hands and a rather screechy voice! These days Lou prefers to watch videos from children performing at ‘America’s Got Talent,’ with her favourite being that of a girl singing ‘Roar’ by Katy Perry, which she watches many times in a row, every…single…day! I have noticed that Lou does pronounce certain words with an American accent. From the age of 5, and current special interests are the ‘Trolls’ movie and ‘Shopkins,’ Lou collects the small figures and enjoys lining them up and ordering them. Rather like I used to do with ‘Polly Pocket,’ figures, and indeed, the original 1980s/1990s Trolls! Lou has Trolls everything! Just like she did with the Frozen craze. She also amazes me with how she can name every ‘Shopkins’ character and there are 100s! Am I tempted to re-collect Trolls figures? Yes very, especially after I needed to de-clutter before moving house around 3 years ago and I gave my collection of 100s of Trolls figures to a charity shop and then I see them going for ridiculous amounts on eBay! Whoops! But I will live my special interests like this now through my children!

Lou has been fascinated by time, she could tell me at 3 and a half years old that it was “7 O’clock.” Lou likes the days of the week, months of the year, dates, and times, she has her own ‘wall of organisation,’ at home displays days, and daily visual timetables, as she likes to know exactly what is going on and when.

 

I love hearing about the ‘Special Interests,’ of others, I recently asked some fellow SEND Bloggers and people I know who gave me permission to share their special interests.

 

Someone’s Mum has a son, aged 4 who likes Queen, Billy Joel and the Beatles, she wrote this fantastic post where she also mentions her son’s love of Pianos. Read this here: the-things-they-love-and-the-things-we-do-2/

 

First Time Valley Mam has a son, Z, who loves collecting rubber ducks, the lovely ones with patterns on, he has 100s.

 

Rainbows are too beautiful has written a post about her son’s love of Formula 1, read this here: whose-birthday-is-it-today

 

Faithmummy told me how her son, Issac (8) loves lifts and hand dryers and also Bing Bunny. He takes Bing everywhere, and I know that my Moo would love his T-Shirt! She also told me how her daughter, Naomi (also 8,) enjoys Thomas the Tank Engine.

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Issac (8) with his Bing bunny, photo with permission from http://www.faithmummy.wordpress.com

 

Our Autism Blog told me that her daughter enjoys soft toys and Pokémon.

 

Autism Mumma has a son, T who is into Football and a daughter, D, who likes Bradley Walsh and looking at pictures of My Little Pony and drawing.

 

Riko’s blog, PDA and more who’s eldest child has always been interested in Marine Biology.

 

A very good friend of mine has 2 lovely children, Jessica (9) absolutely loves Ladybirds and has since the age of 2 and a half, she also loves ‘Animal Jam’ which is an illustrated game that is partnered with National Geographic. Jessica’s brother, Harry (6) is into ‘information,’ and London, especially Big Ben.

 

I love reading and talking about special interests, everyone is different, we all have different interest and I like to hear about them 😊

Spectrum Sunday

Childhood Experiences ~ Sports Day


This is me at 8 years old, in my last year of ‘First School,’ the sports day experience I had 27 years ago I can remember vividly like it was only yesterday, this was the start of all sports days to come and I’ve never forgotten it. 

On Wednesday I read a post from Faithmummy What happened when a child refused to have my autistic daughter in her team which is a brilliant post written by Miriam Gwynne, who is also a member of a group of SEND Bloggers than I belong to. Reading this about Miriam’s daughter having to prep for her sports day, took me right back to how I felt on days like Sports Days whilst at school. I dreaded those times when it came to team games and picking team captains and team members, I struggled with co-ordination, I found any physical activity very difficult and I towered above my peers, at age 8 I was in age 11-12 clothing. I was the girl that nobody wanted in their team. 

Not every child likes Sports Day, in fact, I hated every minute! 

I hated the pressure of demands, “do this, do that, stand here, go and stop.” I hated team games, the hype and passing a ball to other team members and other kids getting angry if I wasn’t quick enough or dropped the ball. 

All those people watching, I hated drawing attention to myself and being ‘on show,’ I hated the noise of the crowds of spectators shouting “come on,” the metallic sound of the crowd, all their voices merging into one that noise that makes my ear vibrate and travels through the whole of my body, it feels like it’s bouncing off my bones, thinking to myself: “Please make the noise stop! I just want to go home.” When I dared to look into the crowd all I could see was a sea of eyes, staring and watching.

I was desperate not to be last, desperate not to be laughed at, and even more attention being drawn. In the sack race because I was so tall, my sack reached below my knees, when everyone else’s came above their waists, so of course I came last, I sat and I cried and cried I couldn’t stop, someone said “what are you crying for?” 

I copy and mimic what other people say, I even caught myself saying this to my child the other day:

“It’s not about the winning it’s about the taking part.” 

I stopped myself as I suddenly thought, what would my 8-year-old self have thought? 

“It’s not even about the taking part, what if I don’t even want to take part?” 

“I’d rather be reading a book like Matilda or  any other Roald Dahl.” 

So this year I won’t worry if my big girly finds it all too much to even take part, it goes back to trying to fit us ‘square pegs’ into those ’round holes.’ 

And please don’t pressure me into taking part in the all important ‘mums race!” That’s a whole other story ! 

We got out! (June’s Trip) 


This title may sound trivial! 

But I just wanted to share that we had a successful trip out as a family last weekend! 

I could write a whole blog post around the reasons why I don’t drive so I’ll save that for another time, but days out have to be planned with precision, I often just wish that I could have the ability to just jump into a car and whizz the kids off at any opportunity. But sadly not, we have to plan trips based around public transport and we are extremely luckily to live only a 5 minute walk from a train station. 

Lou is now getting quite accustomed to using the train now, and as long as she has something to ‘fidget’ such as her ‘fidget cube,’ then she’s normally ok on journeys lasting under 30 minutes. On Saturday June 10th we visited a local animal park, the weather wasn’t too bad and the rain held off but I was surprised actually how quiet it was which was only a good thing in our case as both Lou and myself don’t cope very well with crowds of people. On previous days out Lou had become overwhelmed and then has experienced a ‘sensory overload,’ sometimes resulting in us leaving earlier than planned. 



The girls enjoyed a quiet look around the animals and Lou was impressed with the parrot saying enthusiastically: “Mummy, quickly look, it’s Rio!” This was also our first proper trip to use the ‘Mountain Buggy’ for Lou and she had a perfect view! 


Trips out have to be carefully planned and we have to offer a lot of choices for Lou throughout the day, due to the fact that Lou displays traits of Pathological Demand Avoidance (PDA,) she prefers to dictate to us what she wants to do and where she wants to go, knowing that she would have happily stayed in the ‘soft play’ area the whole time, and that Moo was desperate to see the animals, we had to say things such as: “Now it is seeing the animals and then it is soft play.” As long as Lou feels that she has some sort of control over decisions she’s improved in public situations since this time last year. 


The girls enjoyed time sitting on machinery and Go Carts with Daddy. 


And to wind down after an exciting day, we ended in the sand pit area, which fills the whole room! With Lou doing her daredevil ‘Spider Girl’ swinging moves! 

Lou was understandably tired after such a busy day out and the train journey home wasn’t as straight forward as the way there! 

I often end up feeling guilty that my girls don’t experience days out like some other families do, but with money restrictions and the pace that our children are learning to cope with situations, we are learning that we can only do our best. We are now planning for a similar trip once a month, until the girls are familiar with the process, sticking to places that are a direct train journey away such as Worcester or Malvern. Then hopefully further a field eventually. 

Sometimes we just have to do things our own way and not worry about what other people are doing! 

Thanks for reading ! 

**Please note that this is not a specific review of the animal park we attended, the photos are my own and we paid full ticket price to get into the park, I wanted to share the details of taking our children on days out. 

For more information on the animal park we visited please visit: 

https://www.allthingswild.co.uk/

Or Facebook: 

https://www.facebook.com/allthingswild1/