Managing Challenging Behaviour and Meltdowns

Amber at her finest ~ covered in foam at a ‘Messy Play’ session.

Challenging behaviour and meltdowns are something that I deal with every day. After working in Childcare for 12 years, (6 years with children with additional needs,) nothing could prepare me for dealing with my own child’s challenging behaviour in the home environment. I have soon learnt that the relationship I had with my pupils is completely different to the emotional connection that I have with my own daughter, Amber (4.) I have learnt that certain strategies that may have worked with the children I looked after do not work with Amber.
I quickly had to learn the important huge difference between a ‘temper tantrum’ and a ‘meltdown.’ As Amber has Sensory Processing Disorder (SPD) with traits of ASD and ADHD, she can experience ‘Sensory Overloads’ and this often results in a ‘meltdown.’ This is when I describe that she is no longer in control of her emotions, I’m often describing that Amber is neither ‘naughty’ or ‘spoilt,’ these are meltdowns are occurring because there’s a sudden loud noise, a change of routine or she has become overwhelmed in a supermarket from the noise, the lights, the sheer volume of people. Amber has difficulty recognising that she’s feeling overwhelmed and therefore will display her feelings via kicking, hitting, pushing, throwing items, pushing her younger sister over, pulling stairgates off walls, thrashing herself about, banging walls or doors, spitting, screaming or shouting.

At 18-months-old I first noticed that Amber was a ‘sensory seeker,’ she would actively seek out anything that would provide a sensory input, for example, she enjoyed running the taps in any bathrooms and feeling the water run through her hands. I found that her temper tantrums were frequently and I was constantly told that this was “normal for her age,” and that she would “grow out of it.” By the age of 3 she became a big sister and I had prepared myself for her behaviour to become more challenging, the advice I was given was that this should only be a ‘stage’ and that after she was used to having a new baby in the family, then her behaviour would improve, however it didn’t, and as time went on she became increasingly worse, and would display on the whole as compliant in her Early Years setting but extremely challenging at home, she would target her baby sister by pulling her legs and trying to tip over her Moses basket, the jealousy she felt toward her baby sister was quite extreme. By the age of 4 I started to recognise certain things that Amber didn’t like, that she would avoid, for example, physical contact – she would only give out cuddles on her terms and when she did they were very tight cuddles! She also became anxious around unexpected loud noises like motorbikes when outside and she could hear aeroplanes and grass cutters long before I could! It was around her 4th birthday that I would say that Amber’s ‘extreme meltdowns’ started. These were sometimes around 10 times a day and some would last over an hour, and I found it incredibly difficult to deal with as it was such unknown territory for me. The main triggers for a meltdown are:

• Unexpected loud noises,

• Changes to routine – finds school holidays very difficult.

• Wanting something that she cannot have – usually centred around food, as Amber cannot tell when she feels full.

• Public places – usually indoors – supermarkets, libraries, sports halls, swimming pools, cinema, theatre.
I can usually gauge when Amber is on the verge of a meltdown, she becomes extremely restless, will talk quickly and will jump, clap her hands in front of her face or try and climb onto anything she can to jump off.

I use a range of strategies to help avoid a possible overload:

• Visuals – to display routines of what is happening during each day, traffic light system – to help Amber identify if she needs to free play (green,) find a calm activity such as playdough (orange,) or go to her ‘calm zone, (red.) I also use individual cue cards and fans, e.g to show ‘kind hands.’

• Always carry Ear defenders – in case of loud noise, e.g. at the train station.

• Listening to fears, worries, frustrations and what makes her angry – talking through exactly what the problem is if she is willing to share. This is a recent strategy that has worked once I noticed more challenging behaviour days before a Halloween party, we talked and Amber said “Mummy I’m scared of Halloween.” I could then address this to avoid an overload.

• Keeping calm myself – this is easier said than done! It is one of the most difficult things that I’ve ever had to go through and I’ve always been told that I’m a calm person but it’s very difficult to handle when you are being challenged daily, and you’re the main person that your child outlets with, there was a time when I felt completely hopeless and my self-confidence took such a knock. But staying calm allows situations to be diffused, if my voice is raised then Amber will also raise hers, but If I remain calm, then she calms quicker.

• Avoiding the word “No” – we use strategies to avoid demands on Amber, if she hears the word no, she can become even more angry. We phrase instructions carefully, for example, when getting dressed for school: “You put your socks on, or I can help.” This can be quite challenging for us to think of at times!

• Distraction – Amber thrives on sensory and messy play experiences as part of her ‘Sensory Diet,’ If I plan experiences when she’s at home, such as playdough, sand and water play, foam play, etc she is satisfied in terms of her ‘sensory seeking,’ and I find that her level of concentration is much higher whilst engaging in this type of play.

I have learnt over time that there are specific strategies that can help during and after a meltdown:

• Breathing exercises, e.g. lying down and counting to 10 with a teddy on her tummy. Smelling the flower (breathing in,) and blowing out the candle (breathing out.)

• Calm area – a specific area of the house, including blankets, cushions, bubble tube, sensory toys.

Amber’s ‘Calm Area’ is under the stairs, as she prefers smaller spaces.

• Wrapping up in a blanket – Amber responds to a ‘weighted blanket,’ and likes to feel safe and contained.

• If in full meltdown mode, (as I haven’t had up-to-date restraining training,) I have been advised to ensure that Amber is safe, e.g. that she cannot bang her head and that I leave the room with her younger sister for safety, but keeping Amber in sight.

• Offering a reassuring cuddle once a meltdown is over, to talk about what happened later, once she is much calmer and try to establish what the problem was.

• Rocking and cuddling tightly can help to calm her.
I felt completely lost after having my second child when Amber’s challenging behaviour peaked, I would have appreciated someone to advise me that everything would be alright. Now I try and help other parents as much as I can, this is one of the reasons why I started my Blog in March 2016, I’ve always said that if I could just help 1 other person it would be worth it.

My top tips for parents who experience challenging behaviours from their child are:

1. Connect with other parents – via social media support groups and local support groups. I attend a parent’s support group, for those that have children with additional needs, which is run from my local children’s centre I have also joined a local support network where there are meet-ups for parents to connect and for the children to interact. This is such a huge support for both myself and my partner, to talk to other parents who know where we’re coming from and have been through similar experiences, this allows us to share tips and ideas and provides a reassuring emotional support.

2. Research – time is precious and we lead such busy lives, but I’ve found it so useful to research the reasons behind challenging behaviours in children, via internet searches and reading various books. There is a fair amount of reading material out there and I’ve found a lot of helpful books that offer information on dealing with anger in children. I have soon learnt that ‘there is a reason for every behaviour,’ and this has put it all in perspective for me, to stop and ask myself: “Why is this particular behaviour happening?”

3. Never be afraid to ask for help and support – in the beginning I saw asking for help as a weakness, I was embarrassed after working in childcare and that I was struggling to cope with my own child’s behaviour at home. But once I contacted my local children’s centre, and was offered Family Support this turned our whole family life around. Our family support worker made weekly visits to offer advice and strategies to support us to deal with the challenging behaviours that Amber displays. Without this vital support our whole family life would have suffered.

4. Always carry a ‘Fiddle’ bag or box wherever you go! This has prevented many meltdowns, especially whilst out and about, providing a distraction and something to focus on if I recognise the signs of Amber becoming restless, or on the verge of a sensory overload.

Squeezy/stretchy toys and fiddly toys – such as a ‘Tangle.’

5. Believe in yourself! – As someone who’s parenting strategies have been constantly scrutinised, this has really knocked my self-confidence, as Amber is a very good masker of her difficulties and she tends to offload mainly with me, I’ve now learnt that this is because she feels most safe with me and that it is nothing that I’m doing wrong. Believe that you are doing a good job. Take a deep breath and try to offer yourself little ‘brain breaks,’ I go upstairs for 5 to 10 minutes and sit quietly in a dark room once Amber’s daddy returns home from work. It is very difficult to find time for me, bit this is so important.

Thanks for reading 🙂

Spectrum Sunday

My story isn’t over yet… #WorldMentalHealthDay 2016

My own design which describes my journey. The butterfly is a symbol of peace and freedom to me. I’d love a Semi-Colon butterfly tattoo (when I’ve found out if I’m allergic to the dye.)

I usually prefer to write about Lou’s journey, not my own.

But on days like today I remember back to 2008/9 when I had, what I now describe as my ‘tricky time.’ I prefer to write all of my memories from this time to my online books. I’ve always carried a feeling of being ashamed of suffering a nervous breakdown, but what I’ve learnt over time is that it happened and I’m here to tell the story and therefore:

“My story isn’t over yet!” 

(Source: Slogan from Semi-Colon project.)

I was homesick, 3 hours from where I grew up, I hadn’t really branched out to make a lot of new friends outside of where I worked as I didn’t feel that many people ‘got’ me. I had a bad reaction to some anti depressants and it all went a bit down hill from there. I remember feeling so very scared because I didn’t feel in control of my own body and I couldn’t trust anyone around me due to the paranoia I was feeling at that time. I have this tremendous pang of guilty because people did get hurt at this time, lives were changed down to me but it’s not like I chose for the black cloud to descend on me 😦 

I could have stayed feeling guilty forever, I could have let it consume me, but I now take the approach that: 

“Everything happens for a reason.” 

And I wouldn’t be on the path I am today if these events hadn’t happened. I had to go through a tremendously rubbish path to enable me to learn about myself and become the strong person that I am today. 

This event in my life sparked some (still mainly) unanswered questions about myself, as a child and also an an adult. I suffered brain trauma at birth, could this have any effects on my mental health? (Another topic for my ongoing research,) although no one is to ‘blame’ all I can do is learn about myself and how I can go about to ensure I can function. I have questions about:

– Depression

– Anxiety – (in particular, social anxiety.) 

– OCD tenancies 

– Undiagnosed Autism? Particularly Asperger’s Syndrome.

– Bi Polar? A huge question mark as I no longer have ‘high’ episodes, more on an even keel.

– Highly Sensitive Person (HSP.) As suggested by a great counsellor I saw. 

– Sensory Processing Difficulties – in particular, a ‘sensory avoider.’ 

I could sit and ponder on these things all day but…

…What I have got are 2 beautiful children and a partner that understands me, for me, like no other person has (except my mum!) Ever! I’m now back, where I feel that I belong, back where I grew up and in familiar terratory. With people close by that would spot straight away if I didn’t seem right. My issues have only meant that I’ve ever had a few weeks away from working, I’ve been able to do a job that I so desperately love, that allows me to forget about my worries, for over 12 years. One of my biggest worries is that my issues would stop my future career prospects as my fear was that people would ‘think’ that I wasn’t suitable to work with children, but it has never stopped me, it’s one of the elements where I tell myself “keep going, your good at it!” When I run my music sessions currently, and I see the children are smiling and enjoying themselves I think to myself “this is what I was born to do.” 

I do worry that I could have future ‘occurance’ but I desperately try not to dwell on it, I worry that my daughter will suffer the same worries as a teenager and throughout stressful times in life. But I can be the one who can spot her troubles and get the appropriate help if needed. 

Mental illness needs to be talked about, for years it felt like my ‘dirty secret’ I was so worried and moulded on other people’s impressions of me. What are people with a mental illness supposed to act like? Do people expect me to have a massive meltdown in the middle of a public place?! Do people expect me to sit and cry all day? In fact I find it very difficult to cry, I have only cried twice in the past month! 

We need to talk to other people who are going through, or have been through the same experiences, I have a few friends and my sister who I could be completely honest with about how I’m feeling and can talk openly about my experiences, I recently chatted to one friend for 3 hours about how we perceive the world and people in public, and realised that it’s not just me who thinks a certain way! Which was a massive relief for me! I’ve only had one experience so far, of sharing my problems, (regarding a view I have on a particularly sensitive subject,) where this person really couldn’t understand me, and later referred to me as “ungrateful” amd “selfish,” (needless-to-say, I no longer associate with this person!) 

This was one of my first original quotes that I produced after starting my Blog in March 2016. Blogging to me is fantastic therapy. There are so many thoughts going around in my head, it’s a relief to get them out and onto the Blog.

For more information and/or help, please contact: 

www.mind.org.uk

www.time-to-change.org.uk

One of my biggest hurdles was plucking up the courage to tell my GP how I was really feeling, the GP’s can only really help if you open up, something that I’ve learnt over time. I was so worried about being dismissed or being told that I was “making it all up.” But thankfully, this has never happened. If I have a problem I write it down and hand it to my GP, for me, I am the sort of person who finds it easier to write things down, rather than to make eye contact on a particular sensitive topic. If you, or anyone you know, are feeling that you need to talk to your GP, my advice would be to write it all down and post or take it in personally.

Thanks for reading 🙂 

Save Our Children’s Centres Campaign poster 

As one of the admins for the ‘Save Our Children’s Centres’ (Worcestershire) campaign, I have designed this campaign poster 🙂 including a photo of Lou’s trademark hands! 

Anyone who has read my 2 Blog posts, and/or read the newspaper article with our story, you will know how the local children’s centres have supported us as a family since August 2015. Without this support we’d be completely lost – however we have already seen the effects of these cuts, as opposed to weekly visits last year, we’ve only had 1 home visit due to the funding cuts and staff redundancies. The family support workers are being told to target and support families in ‘areas of high deprivation’ but what about families like ours who just needed support at home that have a child with additional needs, our worry is so many families and children are going to slip through the net 😦 it doesn’t matter how much money you have, or what your social status is – every child and their family has the right to support. 
If anyone would like to support us please visit Twitter @SOCCWORCS
Anyone is welcome to join and you don’t have to live in Worcestershire 🙂 
Thanks for reading 🙂 

Our ‘Support Crew’ 

Family Fund Blog post for October 2016.

When I heard of the theme of ‘Our Support Crew’ for October’s Blog theme, I was excited to celebrate the people that have been there for us as a family, especially over the past 2 years. I am often telling the people who support us how grateful I am, but it’s also great to celebrate these wonderful people in a Blog post.

My family:

My parents live a 5-minute drive away from our house, as both myself and my partner, Paul are unable to drive (for various reasons,) I am so very grateful that my dad is always on hand to help out with travelling to one of the many appointments that I have to take Amber to. This may be for a hearing test at our local hospital, which is 8 miles from our house, Occupational Therapy appointments, and even though Amber’s Paediatrician appointments are at our local medical practice, its difficult for me to keep Amber calm with her younger sister of 18 months present also. My dad will drive us to these appointments and then supervise my youngest, Maisie whilst I go in with Amber. My parents are extremely understanding of Amber’s difficulties, whenever I receive information or reports I place them in a folder and often photocopy for my parents to refer to. They are very good at carrying on certain routines, if Amber goes over for the day, or stays for a few nights, for example by using her visual timetables or sensory toys if they can see she’s getting a bit overloaded. Apart from Amber’s daddy, my mum is the only person that has witnessed Amber’s extreme sensory overloads, this is because Amber is very good at holding her overloads in. I have found that Amber will only display extreme meltdowns with those whom she is most comfortable in the company of – one being my mum. My mum has 25 years Early Years’ experience, she is the calmest person I have ever met and is so brilliant with Amber, she has taken on some ‘Sensory Diet’ activities when Amber goes over, such as making sensory play dough. 

Amber with her Nanna

My sister is also Godmother to both Amber and Maisie, she too has helped out with appointments and will come over to play with the girls to give me a little ‘brain break!’ Their Aunt and Uncle are extremely good at playing role-play ‘shops,’ which is currently a big hit with Amber! My sister recently stepped in and took over when I couldn’t move due to Sciatica in my back, changing and dressing and giving the girls their meals. 

Maisie with her Aunty Bex
Amber with her Aunty Bex

My cousin, who works in childcare, has a great rapport with Amber, only last month she drove us to a local ‘messy play’ session which Amber thrived on. 

Amber with my cousin

Paul’s family:
As I wrote in a previous Family Fund Blog post, Paul’s dad’s family are a fantastic support when we take the girls to visit them in Somerset. Even though there is distance, and we would love to live closer, the support and advice is there via weekly ‘Face Time’ via mobile phone with Paul’s sister and niece, and a weekly phone call to Paul’s dad keeps him up-to-date with all our going’s on! We find that Social Media sites allow us to keep up-to-date even though we live 1 ½ hours apart. 

Amber with her Aunty Vicki
Amber with her cousin
Amber and her cousin have a strong bond – it’s lovely seeing them holding hands whilst going down the slide!
When Amber’s Aunty and Cousin visit she loves trips to the park

Friends and neighbours:
We have a fantastic network of friends and neighbours, this network grew once we moved to our current home in August 2015, and I got speaking to some of the other parents at Amber’s Pre School. Many of these friends are regularly kept up-to-date with Amber’s progress, before meeting these lovely people, I was extremely anxious about taking Amber on a ‘Play-date’ in case she was to hurt another child. My friends have been so encouraging and have taken note that Amber’s play-date time limit is around 2 hours, and will be aware of this if Amber starts experiencing sensory overloads. One of these wonderful friends lives only 2 doors away and is Maisie’s Godmother, and such a great support to our family. Friends have taken us on trips to local parks, animal parks, our local countryside centre and we’ve had a lovely walk through the woods together, which Amber – being an ‘outdoors’ girl, absolutely loved! Our friends are very understanding of Amber’s difficulties and many have reported how she makes them laugh with her infectious personality! When my parents were away on holiday, one friend even took us for one of Amber’s hospital appointments, even though they have children of their own, they always find the time to help us, and for this I am eternally grateful. 

Amber during a ‘Play-date’ with one of her friends

Health professionals:
When I first recognised that Amber had some difficulties, we had quite a mixed response in terms of support when she was around 2 years old. Often our parenting was scrutinised in the beginning as things hadn’t been looked into long enough and a great deal of Amber’s overloads were put down to the ‘Terrible Two’s’ which I did have my doubts about. Because Amber’s behaviours at home were difficult past the age of 2, then 3, then 4 we knew that something needed to be looked into. We were extremely lucky to move back to the area covered by Amber’s Health Visitor from when she was first born, who knew our family well. When I explained the situation to this Health Visitor, she was the first professional who actually said to me: “I believe you.” She witnessed Amber at home, climbing onto furniture, not settling, continually being on the move and sensory seeking. She then arranged for a referral to an Occupational Therapist. 

Education professionals:

Amber had attended a few different childcare settings before our house move in August 2015, at first I was reluctant to move her to yet another setting, but the house move was a necessity as it was vital that we moved from our first floor flat to a house with a garden to benefit Amber’s love of the outdoors and to allow her to burn more energy. I was so glad that we made the move to her Pre-School as a member of staff first introduced us to the SMILE (Sensation Movement Interaction in Life Experiences) Centre in Malvern, Worcestershire which provides Amber with so much support in school holidays. The Pre School leader was the first practitioner to mention Sensory Processing to me, as I’d only come across 1 child in my 12 years in Education. This practitioner organised monthly TAC (Team Around the Child) meetings to ensure that Amber received the best level of support from Pre School and support us as a whole family also. The Pre-School leader ensured that Amber’s transition over to school was smooth via an in-depth hand-over and we are very grateful to the school’s Inclusion Manager who, in only 3 weeks of Amber attending, has already offered a tremendous amount of support and advice. 

Without our ‘support team’ we would be utterly lost, sometimes all that is needed is a listening ear, especially if it has been a tough day, it’s very easy to get caught up in our own family ‘bubble’ at home, and letting people in to help and support only makes us stronger.

Amber loves helping to take her Aunt and Uncle’s Dog, (Lenny) for a walk

Thanks for reading 🙂 

Nicki ~ Sensory Sensitive Mummy 

Paul, Nicki and Amber at 10 months old

Latest Updates

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I’ve not been able to post as much over the past few weeks, much to my disappointment, as I’ve got so many posts to write! We’ve been so busy with the start of the school term and many different appointments which are all helping to support Lou, which I’m very grateful for!

Today I received a report from Occupational Therapy, (after our appointment last week,) which outlined that Lou struggled with gross motor activities, often trips over things and lacks spatial awareness, something that I’d definitely agree with! It was noted how she couldn’t settle on an activity in the OT’s room and was trying to gain my attention in any way possible. I’ve noticed this before, as Lou dislikes it when I talk about her to professionals. It was interesting that the OT picked up that:

“Not all difficulties can be solely explained from a sensory basis, her emotional and behavioural response to demands placed on her or requests to comply, particularly at home also impact on her development.”

This is exactly what I’ve noticed from 18 months old and has been one of my greatest worries, there are huge behavioural and emotional problems, particularly at home. Which is the questions I’ve had about the ‘other’ factors that may accompany Sensory Processing Disorder.

I have been given some great hand-outs on Postural and Limb Control and Stability, to help with the hypermobility aspects. And the gross motor and spatial awareness. I will receive a visit from the OT next week at home, as it was so difficult for me to take in the information whilst also ensuring Lou didn’t run out of the door, which she attempted several times! The OT is also going to visit Lou at school to see how she functions there.

Today we saw Lou’s Peadiatrican, and again, Lou was extremely lively! She loved the examination couch as usual! And liked the antibacterial hand cleanser very much! We had the same behaviours as when we saw the OT with constantly trying to gain my attention by running out of the door and wanting to go to the toilet several times! We talked about the main issues on anger, aggression and frustration and about eating. It was agreed that the best way forward is to see how Lou settles in full time school hours as this will tell us a lot, with certain activities going to be put in place to release the sensory overloads throughout the day, will she still hold it all in and explode once reaching home? Lou will be seen again in January 2017, when we’ve seen her at school for a whole term. As we’ve talked about previously, there’s no doubt that Sensory Processing Disorder is there, but the next question is if this stands alone, or if indeed there is something else that’s accompanying this. It was noted that there are traits of ADHD in Lou, especially the hyperactivity, but Lou is still too young to go through the assessment for ADHD. There are also traits of ASD but again, we need to wait a bit longer to see how she gets on, as I agreed that many 4 year olds display as energetic! We need to know if this is going to carry on, or if it will settle.

To conclude, what we need to do is carry on with the visuals, visuals, visuals and take all the advice given. Looking back to that black pit that we were in last year when Lou’s behaviour was blamed on our parenting skills, (thanks for that goes to our old Health Visitor!) We have come a long way, we are now being listened to and I feel that Lou is receiving the help and support that I’ve been fighting for now for over 2 years!

2 more bits of ‘news:’

  • I’ve reached 800 Twitter followers 🙂 Massive thanks to everyone!
  • In October , as a family of 4, we are being photographed for the charity ‘Family Fund,’ to be used in their marketing materials!

 

Thanks for reading 🙂

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“Learn to control it” 

Lou has a big ‘special interest’ in Queen Elsa from the film ‘Frozen.’ When she is asked: “What do you want to be when you grow up?” Everytime she answers: “Queen Elsa,” wow my girl has high ambition! She likes to dress as Elsa, role-plays Elsa and Anna and sometimes the only time she will let me tie her hair up is if i say “you’ll look like Queen Elsa!” 

Queen Elsa had to learn to control her special powers to avoid others being fearful of her and she had to learn how to be accepted.

It was during a course I attended yesterday called ‘Understanding Autism‘ (which was run by ‘Autism West Midlands,’) that the comparison of Lou to Queen Elsa came to me. As a group we discussed strategies for dealing with anger, outbursts and sensory overloads. One of the things I think will come with age is for Lou to understand the signs of a meltdown for herself and to be able to recognise when she needs to take herself off to her calm place before she hits out, shouts, screams, throws objects and spits. 

After a fairly big meltdown yesterday afternoon, and when Moo was having her afternoon nap, once Lou was calm I spoke to her about how being angry makes her feel and I was astonished when she said “my head was red mummy.” She too experiences what I describe as ‘The Red Mist.‘ Something that I am familiar with, especially when I was a teenager. If I was being called names at school, being picked on or if I’d got something wrong, such as my homework, I’d hold in my anger and frustrations for the rest of the day and once I got home, I usually went up to my room and let rip, I’d cry, scream and generally throw things about. From talking to my parents this isn’t something I did as a child, as I was extremely calm and passive, it was like I’d been saving it all up for my teenage years! What I had to do was learn to control these feelings and I’ve got better with age. At times of great stress I do tend to see this ‘Red Mist‘ again, but now I usually go for a walk once Lou’s daddy gets home, or I take myself off to my room for a quiet few minutes. What I’ve found is that if I’m trying to teach Lou to “stay calm” and take a “deep breath,” then I have to be the positive role model, and refrain from shouting or completely losing it, no matter how hard this may be! I find Lou’s meltdowns extremely difficult to deal with, other people may deal with this kind of thing differently, but I find it very challenging when she’s screaming at me as I’m not a fan of loud noises and I have a perferation on my ear drum and if I’m near a loud noise it vibrates and causes discomfort. I’m also not a fan of confrontations and physical harm. I want to run away when Lou is hitting out at me and I know that as her mother it is my duty to keep her safe from harm.

Yesterday was the first time I had sat in a room with other parents who experience the same on a daily basis, this was a big step for me and so reassuring. I have a few meet-ups and a trip coming up over the next few weeks with other parents who have children with additional needs, something that I’ve been wanting to do for a while now. It’s very reassuring to talk to other people that know what your going through and have been there. 

My hope this that, with time, Lou will recognise the signs for herself and take herself off to her ‘calm zone,’ or go and lie on her bed before it gets to the point of a meltdown. I hope to use her special interest in Queen Elsa to use as a role model who learnt to control her ‘powers.’ 

For more information visit:

Autism West Midlands

To find a local support group in your area visit: 

SPOKAN

And visit Facebook: 

@spokanuk
Thanks for reading 🙂 

This girl loves her ‘Queen Elsa’ dress, even if it is fashioned with a red Power Ranger mask!

Spectrum Sunday

Wow what an appointment!

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Today we had Lou’s first Occupational Therapy appointment, she was definitely in her ‘worse case’ scenario mode to be observed, after having a massive meltdown after coming home from school, I think the change of routine may be finally hitting her. And being an afternoon appointment, she was tired and non-compliant. I needed the OT to see this. It was confirmed that Lou certainly has Sensory Processing Disorder, she is a huge ‘sensory seeker‘ and has quite a substantial case of ‘Hyper-mobility‘ in her joints. As she placed her hands onto the examination couch the amount of flexibility in her joints was very noticeable. What this essentially means is that Lou’s joints move more than say, my own, and she has to work harder in aspects such as gross motor skills.

The OT noted that Lou is a very hyperactive child, who is always on the go, always searching for sensory experiences, she stomped around the room and tried to escape from the room to run upstairs in the building several time, I could see that the OT was nodding, and say “Yes” she’s seen this before and it all seemed to make sense! It was like a light bulb moment to have someone agree with what I’ve been harping on about since Lou was 18 months old! As Lou rolled over a special tube, I told the OT that the ‘special tube’ to roll over at home is usually her sister, Moo.

I wanted to ask so many questions, but it was so difficult to talk and keep half an eye on Lou as she was rolling over the examination couch! As soon as we reached home, the OT called me and arranged to visit my home to talk in more detail whilst Lou is at school. what we will also get is further support in terms of a course to explain more and further support in terms of activities that can be done to bring Lou’s level of activity down to a mid-level, as she is functioning on such a high level of activity at the moment and she has to learn to regulate herself, all fascinating to hear. It is definitely recognised that Lou is holding in her sensory overloads all day as she wants to comply and that’s why we see such as escalation in her behaviour once she reaches home, in a place where she feels comfortable to do so. This doesn’t solve the bruises I receive during a meltdown, but if activities are put into place throughout the day, it should hopefully help to improve the situation at home – fingers crossed!

We’re getting there a bit more now, amazing things happen once people start to listen, understand and believe! A bit more light at the end of this tunnel!

Thanks for reading – I can’t praise my family and friends enough for their help and understanding. 🙂

 

Finally!!!!! 

Just had to share a quick post to share about the phone call I had this morning! 

How ironic that 5 minutes before the call I’d said to my mum: 

“We’ve been waiting to see Occupational Therapy now for a year, no appointment through yet.” 

And a few minutes later I get the call to say Lou will see a Paediatric Occupational Therapist on Friday 9th September! I’m so happy I could cry! We’ve waiting a year for this help and there are not many Paediatric Occupational Therapists in our county. 

I’m hoping the 9th of September brings some well sort after advice and practical activities to help ease some of Lou’s sensory sensitivities that cause the frequent meltdowns, anger and frustration. This couldn’t have come at a better time as we’re currently having a bad day of demands, shouting and hitting me – now, finally we can get the help we’ve been longing for.

This appointment comes only 3 days before we have a multi – agency at Lou’s new school so hoping everyone will work together to ensure that she gets the help and support she needs. 

I’ll will report back on how this appointment goes ! 

Thanks for reading 🙂

Charities I like to support and useful Websites and support groups

There are 3 charities in particular that I like to donate to: 

www.facialpalsy.org.uk

This is a topic that is close to my heart, Facial Palsy UK completes research projects which aim to create a better future for everyone affected by facial paralysis. As I get older I may enquire about surgery, as my skin loses its elasticity. Please see here for more on my personal story: http://wp.me/p7BVlE-1m

http://www.autism.org.uk/

Find out about diagnosing autism (including Asperger syndrome), and the impact on people and their families, and find advice and support on all aspects of life with autism.

I’ve gained such a year deal of information from NAS, via videos and research articles. I recently found lots of information regarding Pathological Demand Avoidance.

www.nspcc.org.uk

This is a subject that this very close to my heart. My closest friends and family know why I am passionate for this cause. It doesn’t matter if your 3 or 33, child abuse and neglect should never happen and there is no excuse for this behaviour. These actions have so many implications, not only the child at the time, but for the rest of their lives they carry it with them and there’s evidence to suggest that certain aspects can in fact, be passed on to future generations.I wish I could give more, but I can help put a little towards helping this extremely important cause.

Helpful websites:

The following are links to websites that I’ve found very useful and helpful in the past few months, all of the following also have a Facebook page/group, and can be found via the search bar.

SPD Parents Support

A great support group for support and advice from other parents. USA site but very helpful.

www.thesensoryspectrum.com

A website dedicated to sensory kids and their parents.

www.sensoryintegration.org.uk

The SI Network (UK & Ireland) is a not-for-profit organisation, promoting education, good practice and research into the theory and practice of Ayres’ Sensory Integration.

https://www.spdstar.org/

Research and education for adults and children with SPD.

www.theisabellatrust.org

Support for parents and carers of children with ASD and/or sensory processing difficulties.

www.lemonlimeadventures.com

Author of Sensory Processing 101. Adventures in homeschooling, natural living and personal experiences.

http://www.arcos.org.uk/smile

SMILE stands for Sensation Movement Interaction in Life Experiences. We help a variety of children with profound and multiple disabilities. Lou attends here for hourly sessions, especially in the school holidays it’s amazing 🙂

For more information please see: http://wp.me/p7BVlE-Y

www.pdasociety.org.uk

Sharing information relating to Pathological Demand Avoidance syndrome.(PDA). Registered charity.

www.awarenessforautism.co.uk

Awareness For Autism is an on-line support network for families and individuals affected by autism.

www.autismwestmidlands.org.uk

The leading charity in the West Midlands for people with autism. Produced a booklet called ‘Sensory Profile.’

www.adhdfoundation.org.uk

Promoting inclusion in mental health, education & employment. Endorses University of Derby’s online course I’m currently completing in Autism, Asperger’s syndrome and ADHD.
Improving life chances through better understanding and management of ADHD, change the negative perception of ADHD into a positive.

www.time-to-change.org.uk

Aims to end stigma and discrimination experienced by people with mental health problems.

http://www.mind.org.uk/

The mental health charity. 1 in 4 people experience a mental health problem every year. Offers support and advice.

http://themighty.com/

Facing disability, illness and mental illness together, some great articles on here.

http://www.redtedart.com/

Art and craft ideas for kids.

Siblings Project

The Siblings Project – every 15th of each month can link up with photos of siblings. Please see more here:http://wp.me/p7BVlE-5v

www.learningspaceuk.co.uk

Specialised Products Aiding Child Education – great sensory toys and equipment, based in Northern Ireland but can order online.

www.cafamily.org.uk

Contact a Family (CAF) – national charity for families with disabled children.

www.familyfund.org.uk

I have written how this wonderful charity help support children with disabilities via grants. Please see: http://wp.me/p7BVlE-1u

SENDIASS

Supports both carers and young people with SEND.

www.specialneedsjungle.com

Parent-led news, information and informed opinion on special needs, disability, children’s mental & physical health conditions.

Hope that this helps 🙂

Thanks for reading 🙂

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