I like to think of myself as a ‘warrior mum’ not a ‘pushy parent’ 


3 years so far, 3 years that I’ve been in a constant battle for understanding and awareness of my child’s additional needs. And I talk to many parents on a daily basis that have been fighting for a lot longer than this. 
After I saw on Twitter that there had been a lot of debate on a certain article published by the TES and Guardian, I thought I’d best give it a read. 

Straightaway whilst reading through it sparked many thoughts and comments about the journey we’re having with our eldest child, and also my own experiences of the education system. 

The first article I read was titled: 

“Its unforgivable that so many children are misdiagnosed with learning difficulties, diverting help from those with genuine need.” 

From TES 24/02/17

www.tes.com

What makes me so compelled to explain myself is that I often stop and think that I may be perceived as a ‘pushy parent,’ instead of a parent who only wants the best for their child, it has stopped me from speaking out in the past and even though I’m now seeing traits of SPD in my youngest child, due to the negative perceptions and receptions I’ve received in the past 3 years, I’m now too afraid to mention anything, I’d rather wait until a professional approaches me ‘if’ they notice something in her. This is wrong, I shouldn’t have to feel like this, with my eldest I just couldn’t stand by and watch her suffer after being told repeatedly since she was 18-months old that “she’ll grow out of it.” Or her sensory seeking behaviours we’re “normal for her age.” 

The one huge factor in having to be in constant ‘battle mode’ is that my child is a huge ‘masker’ of her difficulties at school, and schools seem to be the place where all the assessments go on, they never ask to come in to observe her at home where she feels most comfortable in a environment with both myself and her father, her main care givers, who she knows will love her unconditionally. So what did I do? I sent an 11-page document explaining and detailing how our daughter presents at home to the ASD assessment team as she is currently at the start of an ASD assessment, I do wonder if they see me as a ‘pushy parent’ but I’m a huge believer in always looking at the bigger picture and ‘just because you can’t see it, doesn’t mean it’s not there!’ 

I’ve had so many battles with being believed with our daughter as she displays ASD traits but can give eye contact to the people she is most familiar with, and she can engage in imaginative play and this baffles professionals, (I’m exactly the same,) I will always stand by that the ASD spectrum is so wide that not every child ‘doesn’t give eye contact,’ etc they need to look so carefully at each child as an individual. I’ve researched PDA (Pathological Demand Avoidance) as our daughter scores highly on the PDA scales on the PDA Society website, but actually getting professionals to accept this is a huge battle in itself, even though I’ve clearly identified these traits in my child. 

One statement that really did hit a raw nerve with me was: 

“Almost three-quarters of teachers (72 per cent) believed some parents wanted their child to be labelled as SEND, even though there was little objective evidence to support that belief” 

TES 24/02/17

I would never just ‘want’ my child to be labelled as SEND, I advocate for her for one HUGE reason, and that is to prevent her from going through the same difficulties as myself through the whole school education system, because no one looked at the bigger picture and I was just left to ‘get on with it’ and my mental health suffered so much as a result. 

I was labelled as ‘Painfully Shy’ at both middle school and high school, did they not notice that I was not giving eye contact? That I never spoke up in class? That I was a loner on the whole but hid behind ‘friends’ that I thought were protecting me? That after these ‘friends’ had legged it out at lunchtime (and I didn’t like breaking the rules,) that I hid away in the school library for safety? Did they never notice that I was chewing the skin off my palms and all my fingers and biting holes in my jumpers because I was that traumatised by the sounds and sheer amount of people around me? Did they never know that I was being bullied and teased every single day? Did anyone ever take the time to actually talk to me about what I enjoyed doing and then they would have realised that I had ‘special interests’ and I could tell them anything and everything about these special interests? 

No, nothing, zilch 😦 

Because I was never given the help and support I so desperately craved my difficulties have been given many labels ‘anxiety’ ‘depression’ even ‘Bi Polar’ in 2008, but I’ve always believe that there was something more, but too afraid to tell anyone in fear of being labelled as ‘strange’ or ‘weird.’ 

I’ve been involved in conversations where professionals are confused as to why I can explain exactly how my child is feeling, especially in terms of sensory overloads, for example, I know that she’d be distracted by a label in her uniform as I used to feel the same, labels could effect my whole day at school, like a razor blade is cutting into my skin around my neck. 

I do wonder which teachers were surveyed for ‘YouGov’ on behalf of GL Assessment, (The leading provider of formative assessments to U.K. schools,) as an Early Years teacher of 13 years, even before having my children I would never have ‘blamed’ parental pressure, I just saw them as passionate parents wanting the best for their children. 

I have, sadly, heard many comments such as “you didn’t get all these Special Needs in my day,” and “they are just naughty” but I will always argue that today, in the present we are very lucky to have such a wealth of knowledge via the use of the Internet and more reasearch is thankfully done to understand SEND better than, say even in the 1980’s when I was born. 

If I ever have time mid-meltdown, (or sensory overload,) I would conclude to myself that I could never make any of this up, whilst I’m attempting to calm my child down, by safely restraining her, even though I’ve never had any safe restraining training, though I’ve asked for this time after time. 

In fact, after 3 attempts at applying for DLA I’m now too afraid to apply again, and we save every penny to provide our child with sensory equipment to support her ‘sensory seeking needs’ and equipment like a ‘weighted blanket’ to calm her. In fear of being accused of making it all up to gain benefits. I don’t want money, I don’t want preferential treatment in exams once she reaches this age, as the TES report suggests that: 

Teachers claim that some parents are pushing for a special needs diagnosis so that their children will be given preferential treatment in exams.” 

TES 24/02/17 

www.tes.com

My priority is that my child is happy which is paramount, I spent so much time revising for my GCSE’s in fear of not passing, that I shut myself away from the world and was verging on a breakdown just in fear of failure. I HAD to pass those exams and I missed out on so much in this time, I wanted to match up to the other students around me to appear ‘normal’ and I do not want this for my child. 

I’ve wanted to give up this fight so many times, being knocked back and sent away, but I can’t just leave it, I’ve had to grow a massive backbone which is a huge thing for someone who finds it difficult to oppose anyone else’s viewpoint and has avoided any difference in opinion or confrontation for most of my life. 

I’m now not ashamed to advocate for my child, before we started our journey I would let people walk all over me and just agree with what professionals say, and thought they are experienced, they must be right it must be my parenting…

Umm… no… 

… I am a fighter, warrior mum and I do this because I want understanding and support for my child, for now, for teenager years, and to enable her to reach adulthood without being afraid to be herself and for others to understand her and to accept her for the fantastic, individual and unique person she is 🙂 
Thanks for reading 🙂 

Hooked on Labels - responses & other relevant posts linky

Snippets of Christmas ~ A mini series.

Experiences of Christmas in a household with a child who has Sensory Processing disorder, along with traits of ASD and ADHD. 

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I love Christmas, although it’s a busy time, it has to be my favourite time of year – a special time for family. I come a fairly traditional family, and we have always celebrated festivals such as Christmas in a certain way. Now my eldest child, Lou is almost 5, she is more aware of the celebrations, via home and school experiences. I decided to write a mini series to show what we experience when celebrating Christmas with a child who experiences sensory sensitives and sensory overloads.

Advent calendars! 

I had bought Lou’s ‘Shopkins’ advent calendar a while ago as it was a ‘but it when you see it’ experience! Shopkins are her current ‘special interest’ and she was aware that the calendar was being stored in the kitchen cupboard, as I purchased it at the beginning of November, she asked to ‘look’ at the calendar every day! On the morning of 1st December her calendar was presented to her via her ‘House Elf’ we have named ‘Fred,’ She said:

“Today is number 1,” (then eats the chocolate,) Then: “Now it’s number 2, then 3, then 4!”

We had to then explain that it is only 1 chocolate per day, and this was hard to take in, therefore the calendar had to be stored out of sight!

‘Fred’ the ‘Elf on the shelf’ returns! 

Lou has been coming downstairs for around a week now and saying: “No presents today!” She hasn’t quite grasped the concept of time and when Christmas day actually is. At bedtime we discussed whether Fred would be returning from the North Pole and she announced: “I don’t like that Elf!” Then I was left thinking oh dear, should I really be doing this at all!?! However, on the morning of the 1st December she was delighted that her Elf had returned and she held him until she went to school, even keeping him under her arm as she ate breakfast! When not really wanting to get dressed for school, she shouted at her dad:

“This elf is telling Santa that Daddy is a naughty boy!”

Next in my series… The Nativity!

Thanks for reading 🙂

 

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Channillo: A Digital Publishing Platform for Writers

Channillo is the platform from where I’m publishing my 2 Online series 🙂

Roughly this time last year, Kara Klotz launched Channillo, a subscription-based digital publishing platform for authors. The concept is fairly simple: authors apply to publish their content in serial format on the site, and readers pay a monthly fee that allows them to follow and read several stories at a time. The authors take home a collective 80% of the site’s revenue, based on the number of subscribers to their work, and they have a new channel to engage with readers and build their platform.

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Bedtime + heat = grumpy toddler

My daughter normally falls asleep by 7pm as she gets up at 5am. Thought the same about the heat she didn’t go to sleep until 9.30pm! X

Mummyemblog

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Why is it that at bedtime my happy, giggling little girl, turns in to a grumpy, whiney devil?
I can only assume it is the heat tonight that made her turn in to an absolute terror, and made bedtime last for 2 hours! Yes that’s right 2 sodding hours.
It all started out well, cuddles on the sofa with milk and lala (dummy) and then it started, we needed a bum change, and then some more milk. And then the whining started, that awful noise that is half cry half moan but fully annoying. Then we had full crying for daddy, and then the request for more lala’s.
We had singing, bribery, begging, and finally after 2 hours she fell asleep clutching 6 yep 6 lala’s!!!!
It must be the heat, that turns her in to this crazy little person, like a mini drunk person, singing random songs, begging for another drink &…

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What a difference a year makes…

Tomorrow, on Monday 22nd August we have been in our house for a year. We were keen to move closer to my parents and we were also keen for Lou to go to a school with smaller classes. When we went to view the house I was quite taken aback as it needed a lot of work! I’d always wanted a project but unsure of how much could be done with a 6-month-old and a very lively 3-year-old Lou. My parents helped such a lot whilst we were away on holiday being at the house whilst new carpets were fitted as there wasn’t a single carpet left from the previous occupiers! My parents had to wash the walls as they weren’t left in a great way! And the whole building smelt of stale cigarettes, we decided that neutral tones throughout would allow it to be brightened up and would allow us to start on a blank canvas. Upstairs there were staples in the wooden floors, walls and ceiling, we aren’t sure exactly why! We spent ages picking the staples out to make it safe for the girls, and I had to pick remains of a green carpet out before our new carpet was put down! There are now only a few finishing touches to add to the girls’ bedroom. 

Lou and Moo’s bedroom
Our ‘toy den’ living room! (How I like it!)

Once a carpet was added, (we were left with just a concrete floor!) Curtains added and the living room was freshly painted it felt more like home. 

We still have the kitchen to decorate which was just left white, so my next task is to create a Parisian – style theme. 

The garden needed to be made safe for young children, hardly any grass had been left, and we had to dig it up and start again by adding grass seed to try and get a lawn back. I have never seen so many random objects dug in a garden! I found computer keys, Sim cards, kitchen utensils, etc! All underground. 

We now feel so happy for our girls to play in the garden, when it’s been good weather, we’ve been out there everyday. I added in pots of flowers (just out of picture) and decorated tyres to create a mud pit. My future projects are to replace more fencing that is getting old and to create my own outdoor furniture for the girls, made from a wooden cable reel and pallet. 

We have a very limited budget but we have been pleased with how much we’ve managed in a year, we love our little house in the countryside and have no plans to move! 

Thanks for reading 🙂

Bibetta Lunch Bag Review

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As my 4 year old daughter is due to start Primary school in a few weeks, it was great to be asked to review a Bibetta lunch bag. I hadn’t heard of the Bibetta brand before but from when we received the lunch bag the first thing I thought was ‘this is like a wet suit material.’ after reading up on the Bibetta brand I realised that Bibetta:

“Design and manufacture a range of smart, innovative and practical products to help everyday family life, fun and relaxing.”

Source: Bibetta website

The founder of Bibetta, Paul Brown (products designer and keen surfer,) found that Neoprene, a material used to make wet suits would be waterproof, stretchy, soft, durable and strong and therefore would make a perfect bib material. I also found that Bibetta produce the following products:

  • Ultra bibs
  • Sleeved Ultra bibs
  • Dribble bibs
  • Picnic blankets
  • Swim bags
  • Roll-up changing mats
  • Lunch bags
  • Bottle insulators
  • Nappy wet bags

We were sent a ‘Pink Butterflies’ lunch bag, my daughter immediately spotted the butterfly name tag and soft handle. On our day out to a local park, I was able to hang the bag onto my pushchair and my daughter accessed the bag when she wanted a snack.

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I was pleased to find out that the lunch bag can be hand washed with water and washing up liquid, or normal clothes detergent. The bag can be then rinsed with warm water and left to dry. I was also very pleased to find that it can be occasionally added to a 30 degree, or less, washing machine cool wash. previously I have had to replace around 5 lunch boxes in the last year due to messes and spills inside the bags, that won’t come off even of anti-bacterial products were used to clean inside.

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Older lunch bag that was much harder to clean.

On our trip out we added some drinks bottles to the lunch bag, I was pleased to read that the Neoprene material is insulating, helping to keep contents at the right temperature for longer. One of the drinks spilt in transit as the bottle isn’t great and normally the drink would leak through, but with the Bibetta lunch bag the liquid was contained and when we got home I just wiped clean with a cloth. The lunch bag was dry again within minutes.

I would highly recommend a Bibetta lunch bag to everyone, so practical and spacious. I hope to buy one for my youngest daughter as we visit a few groups, and take drinks and snacks to places such as the park. She also starts Pre School next year and this would be perfect to store her packed lunch. Bibetta lunch bags come in 4 different colours/styles:

  • Turquoise birds
  • Pink butterflies
  • Green owls
  • Blue fish

Each coming with a corresponding animal print. You can download a brochure of products from the Bibetta website, I found that selected products up until bank holiday Monday have up to 50% off. With this offer Bibetta lunch bags are £4.99 (were £9.99.)

I will be updating our use of the Bibetta lunch bag once my 4 year old starts school in September.

Disclosure: We were sent the Bibetta lunch bag for the purpose of this review, all opinions are my own.

Bibetta products can be ordered online at:

Bibetta website

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Thanks for reading 🙂

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Apologies for not as much posting

I will be carrying on with my ‘Sleep and Bedtimes’ guest Blogger series, but I probably won’t be as active with other posts for a short time due to having to do my music planning ready for September and I’ll be running a weekly session at the local Pre School, which I’m really excited about 🙂 It’s occurred to me today that there’s only 2 weeks of the holidays left after this one (it’s going quick!) So I best make a start on my plans! 

Thanks for your patience ! 

The impact that our local children’s centre has had on our Family

I currently feel so passionate about writing this post to explain to others how much of a positive impact our local children’s centres have had on our family. Without this service I’m not sure where we’d be at with our family life right now.

Worcestershire County Council are proposing 1.5 million cuts to local children’s centre services. I have found that accessing these centres have been vital to both myself, and other parents I have spoken to in the past 5 years that I have accessed local children’s centres. I went to Saffron in Worcester for my Antenatal appointments with my first child, born in March 2012. I used to be the baby room leader at the centre in Tudor Way, Dines Green. This centre shared a building with the day nursery I worked for and offered a crèche service for the children of parents attending courses at Tudor Way. When my second child was born in March 2015, we had only just moved to the Evesham area, I found it quite isolating and found it difficult to make friends. I attended the baby stay and play at Orchard Vale centre and found the staff extremely supportive and the other new mothers so friendly. This was a huge step for me as I struggle with self-confidence and I had just found out that my child had additional needs so a supportive group such as Orchard Vale was vital at that time. When we moved house to the Pershore area, I accessed the centre at Blossom Vale. This centre offered me the most support and without this my family wouldn’t be functioning as we are today.

I would like to explain my experiences of the Blossom Vale Centre, Pershore in more detail:

I currently attend with my 16 month old daughter:

  • Tiny Turtles swimming sessions at our local swimming pool at Rivers, Pershore, run by the children’s centre.
  • ‘Bounce and Rhyme’ 0-18 months music session at Pershore library.
  • We have taken part in ‘Sensory Madness’ and ‘Toddle Along’ courses with my daughter.
  • We accessed the crèche in the centre whilst I attended ‘Triple P’ and ‘Family Links’ parenting courses.
  • I have been invited to attend an additional needs parents forum and a talk about Autism run through Autism West Midlands.
  • My partner has attended the Father’s groups with our 4-year-old.
  • In July 2015 our health visitor referred us to family support as we were having a very difficult time at home coping with our child’s behaviour, whom has additional needs. In June 2016 I self-referred back to Family Support. Due to the forthcoming transition from Pre school to school as my 4-year-old finds changes and transitions particularly unsettling.

The benefits of attending children’s centre groups and sessions are that it’s a welcoming environment to talk to other parents, especially if you are a socially awkward and un-confident parent as I am myself. My partner struggles socially and he felt at ease to chat to other fathers at the ‘Dad’s group’ sessions. The staff at the centre are so helpful, they are aware that my eldest child has difficulties with her behaviour at home and when attending sessions they take the time to check in and ask if everything is ok at home. Without groups such as those mentioned above I fear that many other parents will be completely lost and isolated, especially first time mothers, who find that support from talking to other new mothers in the same situation, its such a relief to find that you’re not alone in what your are currently going through, whether this be problems with feeding, colic, sleeping, etc.

The most beneficial service for our family by far has been that of Family Support. I felt like an alien to everyone when I found out that my child had additional needs, I felt like the only parent in the world going through this. Our daughter, now 4, had extreme meltdowns which escalated after her sister was born in March 2015. Her behaviour was unbearable at home, she would scream, shout, throw items at me and was very rough with her younger sister. When our family support worker first came into our home, we were without a diagnosis for my daughter’s difficulties, I blamed myself as a parent and I was extremely low in myself. Our family support worker was able to finish a course of ‘Family Links’ parenting course that I’d be unable to carry on with due to problems in pregnancy, we talked about acceptable behaviours as my daughter has no awareness of dangers, we discussed tactics of how my daughter could keep calm, including breathing techniques and I was offered support and advice on using strategies such as ‘Visual Timetables’ and ‘Social Stories.’ The family support worker helped me gain confidence in my ability as a parent and helped my partner with self-esteem strategies. Without this service my family would be completely and utterly lost, we wouldn’t have been able to function or carry on. As we are currently at the beginning of the school summer holidays I’m unsure as to whether we we actually gain any more family support, as my daughter is on the way to a more thorough diagnosis and has already been recognised as having Sensory Processing Disorder, with traits of ADHD and Autism. Her behaviour has recently spiralled, she is bigger and stronger than when we first accessed family support and faces the transition between Pre school, then the school holidays, then starting First school. She finds changes very unsettling and we are currently experiencing up to 10 extreme meltdowns per day.

I feel so devastated that services like these mentioned could be cut, and centres even closed, my fear is that there are so many other parents out there who have and who are experiencing the same as we have in the past 2 years, where will these people go to for support?

In those times when someone is totally and utterly desperate will more parents be faced with visits from social services when all they need is someone like a family support worker to pick them up and tell them everything is going to be ok?

Thank You for your time,

Nicola Perrins,

Worcestershire Parent and Blogger at Sensory Sensitive Mummy.