I'm still getting 33 and 23 views per day which is great - but please visit me over at my new Blog host for all new posts:
I've been thinking about changing my Blog host for a while now.
Please bear with me while I transfer to my new site:
I will be adding all new content there but will be in the process of adding all previous content from here, which will be a lengthy process!
Summer Holiday Trips - a guide.
Sharing our personal holiday experience.
Left and right: French Weir park, Taunton.
Middle: Doniford Animal Farm, Watchet.
Future holiday plans:
We hope to take that step to have our first holiday as a family of 4. We hope to go somewhere that has everything on site, such as the bigger holiday camps. We know that Amber will get so much out of this experience and it will take a great deal of forward planning but definitely worth it all!
It has been almost 2 years now since I last worked.
I love being at home whilst my children are young, I can't ever get this chance with them again, the time goes so fast...
...But I have such a high functioning brain, I miss the company that a class full of children brings and the company of work collagues.
From the age of about 10 I think I knew that I wanted to work with children, I used to place all my teddies and dolls like they were the children and I'd take a register. As I reached the age to baby sit I used to spend my weekend evenings looking after children in the village. I found it easier to talk to children than I did adults! Children didn't judge me they just wanted me to listen to them and interact with them and didn't care about what I looked like.
When working with children it's a fantastic distraction from worrying about paying certain bills, who's gossipying about who, endlessly tidying my house, etc! It's like to enter a different world where you hand your phone in so nobody can reach you and just concentrate on interacting with the children. When I'm at home it's lovely to interact with my child but it doesn't stop my mind going back to a place where I remember things I don't really want to, especially during nap time whereas there simply isn't even a moment to think about it whilst at work.
The balance I can see for the not too distant future is finding part time employment to try and get a healthy balance between being at home and being at work. I thrive on those moments when you realise that you've taught a child something, when they repeat something that you've taught them, when they make progress however big or small, that is what drives me.
I have spent the past 12 years working in mainstream settings, after finding out a great deal of information in terms of Lou's SPD and other traits I find myself fascinated. I touched on this a few years ago when working with some children with Autistic Spectrum Disorders, this was very challenging but also the most rewarding of jobs. I also feel empowered to give something back to help other children and their parents as my own partner went to a Special Needs school due to having what would be described in today's terms as 'Global Developmental Delay, fairy complex emotional and behavioural issues and later Dyslexia. This has defintely taught me that it's never too late to learn as we're currently working through an Adults with Dyslexia text book.
Some of our home learning experiences:
I've noticed through other mummies' posts recently that they have been posting pictures of siblings via #siblingsproject
This has come at a great time for us as I'm helping to build a positive relationship between Lou and Moo.
They currently have a 'Love/Hate' realationship that involves Lou being rough with Moo, then Moo smacking her back in the face as if to non-verbally say: "back off!"
Over May so far I have noticed some really lovely moments and captured these as seen in the above picture:
1. Top left - helping mummy practice for her weekly music session at Lou's Pre School.
2. Top right - Lou reading to Moo, funny as I've been putting Moo into the travel cot whilst I prepare meals and Lou has jumped in anyway! Can't stop this girl!
3. Bottom left - exploring the new playhouse that Great Granny (GG) got for them, they both enjoyed giving their dolls a tea party!
4. Bottom left - sitting together to open Moo's Christening gifts.
Looking forward to posting in June :)
For the past 12 months I've been fighting...
..fighting for two things:
For the right for my daughter to access the support and services she needs and for awareness that parenting isn't to blame for the behaviours that my daughter displays.
I've been defensive about my parenting skills since Lou was only 3 months old, I'm not perfect I would like to know what a model of a 'perfect parent' is or if this actually does exist. I make mistakes, I learn from these mistakes and I learn as I go along. I can remember the first time I felt like a failure as a parent, Lou had a cardigan on and it was a sunny day and we were sat in a café. I was literally JUST about to take the cardigan off and this lady approached me and said in an abrupt manner: "Excuse me I was a trained midwife and your baby is too hot." I just stood up and walked out I couldn't do right for doing wrong I literally cringed and felt I needed to justify myself over and over. It's been the same ever since and now I've got enough gumption in me to say "thank you" politely and just walk off, I often result to sarcasm and I'm waiting for the day I'm brave enough to add:
"I'm not after parenting advice, but thank you!"
I'm desperate for other people to just see that Lou's additional needs are not down to parenting, I research at every opportunity to help explain her needs to people who may question my parenting. I cringe when she has a tricky moment right at the point where it's just me in charge as it looks so obvious to be me at fault. In my head I'm thinking "they are judging me" and I find I make mistakes under pressure then I panic and evaluate after the event "I should have done this."
Lou's behaviour is extremely difficult it is both mentally and physically draining, at times it is unbearable, but I love her and I plough through because I love her and I want to protect her and keep her safe. During a recent stay at my parents they witnessed some very tricky behaviours and reassured me that I am "doing the right thing." They have seen what I see. Our health visitor has witnessed some tricky behaviours Lou displays in the safety of our home, she didn't stop talking, she didn't stop jumping, moving and demanded attention and was overly friendly. Our family support worker has too witnessed Lou's behaviours in the home and helped refer me to 2 different parenting classes to build my confidence - some information I was familar with, but a lot of strategies I hadn't even though of. Lou was assessed by a Family Fund assessor who witnessed hyperactivity, she even attempted to climb on the lady's neck! We have a GP onside and on April 12th 2016 after a year's wait Lou was seen by a Paediatrician.
Lou always runs around in the foyer at the GP's surgery she has realised she can run, (very quicky) in a circuit right around the surgery. After 2 trips to check out the toilet facilities (this is a frequent occurance,) we were invited into the Paediatrician's office and Lou was invited to explore the toys on offer. Lou was more fascinated with wanting to be weighed and measured jumping up and down on the scales and then climbing up and down onto the examination couch. Filing cabinets were more appealing than building blocks and toys inside the cupboard were more exciting than those already out, so much so she was prepared to try and prize the toy from the Peadiatrican's hands!
The Paediatrician reassured me when I spoke my blame of my own parenting, the best words I could hear were:
"I have witnessed behaviour that is more extreme than I typical 4 year old."
She confirmed that Lou had "Sensory Processing Difficulties" and also recognised that she "displays both Autistic Spectrum Disorder and ADHD traits," although nothing further would be diagnosed until Lou reaches 6 years old.
I left the appointment feeling drained from coping with the behaviours whilst talking and answering questions, especially as Lou had twigged that I was telling the Paediatrician about her and was attention seeking to avoid me talking further.
This is so clever and so switched on to actually recognise this.
After this confirmation I sad as I had to accept that my child does have additional needs but also a happy release that I was being believed, that we were being listened to and that I wasn't being paranoid or making it all up - as if I even could or would. Yet I still get the odd 'parenting advice' and all I can do is try my best to educate and try to explain in the best way I can.
Here are the main findings of the Paediatrician's report and the action that would happen after this appointment:
1. Difficulties in keeping attention on one activity - will flit from one toy to another. She likes things in a particular place and will be anxious if things are moved.
2. Needs extra processing time and at times displays difficulties when things do not go her way. Responds to clear and consistent boundaries.
3. Very challenging behaviours, particularly at home. First noted about 18 months old. Behaviour became even more challenging after the birth of her sibling. Demanding of Mother's attention at all times and very jealous of younger sister. Insists on being first down the stairs or up the stairs and has a strong need to control her environment. Strategies used from parenting classes and includes visual timetables in the home.
4. A number of sensory difficulties including Hypersensitivity to touch and movement. And sensitivity to noise. Displays sensory seeking behaviours. Extremely busy and on the go for most of the clinic appointment. Frequently requests mother's attention and climbed onto examination couch. Did play with some of the toys in the room, but not for long. Has Hyper Extendable joints - particularly noticeable in thumbs, wrists and elbows.
1. Microarray blood test. (Test for genetic syndromes, etc.)
2. Hearing test.
3. Chase up Occupational Therapy appointment.
4. Referral to 'Pre school forum' to aid transition to school.
5. Clinic review September 2016 to see how coping with school environment.
It's nice to be believed. It's all I've ever wanted...
This is me...
...throughout various stages of my life, at 6 months, 3 years, 14 and today.
Take me as you find me!
I've finally reached the age where I'm less bothered about the way I look, or what people think of me, my life is so busy as a mum I hardly think about my Facial Palsy.
Gone are the days when I obsessed about plastering myself with make-up to hide the fact that I had a facial disfigurement,
My facial palsy came about through birth trauma, I was a hefty 9lb 4oz! It bothered me very much as a child, other children would understandably notice and ask questions: "What's wrong with your mouth?" Or "Why does your mouth drop down?"
I either looked down and carried on walking or replied: "Because it's poorly, I was born like it." I hide myself away a lot as a teenager avoiding the other kids that would find it amusing to call me names, as I also had the added delights of a large nose and acne to top it off! I was like "give me a break!" I hid myself behind people that would protect me from the bullies, not necessary the right choice looking back. I wanted to be my own person but found myself acting differently in different friendship groups, so very eager to fit in. I felt like I had 2 completely different personalities. I didn't know that what disfigurement I had even had a name until I saw a TV programme on 'Bell's Palsy', which can effect any one with no specific cause, and will usually get better by itself. Facial Palsy, however, can occur in congenital conditions, via a Stroke, trauma injury - fracture to the brain, skull or face and via birth trauma - forceps delivery or facial presentation which is what happened in my case. Luckily I have 2 wonderful parents and a wonderful sister who have always accepted me for who I am and have embraced my quirkiness!
I go through stages in life where I don't think about having a facial palsy, which weakens the facial muscles, and can cause permanent damage. I cant feel a nerve in the left side of my cheek, yet I can in my right cheek. The first thing I asked when my first child was born was: "Is her face ok?" I knew that it isn't hereditary, but there's always that fear in your mind. I had recently forgotten about it completely until my dentist asked me about my facial palsy, he asked if I had ever tried to get treatment for it. And I did wonder with the technology advances today if something could be done to improve my facial muscles? I don't think it would change much honestly, but there is the fear in my mind that as I get older and my skin loses its elasticity could it become more noticeable and my mouth droop down as it did when I was a baby and child of 4 dreading the school photographer, I still am not a great fan of my photo being taken now and rarely will I smile with my teeth showing! My biggest bug bare is when strangers on the street will openly say to me: "Smile!" if I'm looking moody, and I think hang on this is my usual look!
I do have some small issues that I didn't realise are connected to the palsy, my eyes, especially the left, are constantly watery, especially outside. And I often have a dry mouth and dribble in my sleep (nice!)
I find eye contact difficult, I recently described this to a family member, as it feels like my eyes are on fire and I get a headache if in a full on conversation! As I child I was extremely shy and never spoke out in class, I would say the answers in my head but never out loud, I didn't want people to look at me, I didn't want to draw attention to myself, I just wanted to blend into the background. If I did talk I'd often hold up my hand to my face to cover it. When talking to new people or doing presentations, such as those at University I sometimes lost concentration on the topic I was talking about as my brain would kick in and I'd think "can anyone notice my facial palsy?" "Is it obvious?" It has therefore definitely affected me psychologically throughout my life.
I was encouraged to get myself a part time job to help fund my university place, I pushed myself to talk to people in the local garage where I worked at weekends, I also was able to gain employment in larger retail shops in the city centre which was a big step. I found that I could talk to children much easier than adults! They didn't judge me! In the past 12 years I've been in childcare I've only been asked twice by a child about my face. I feel at ease when I work with children. I am also sure that one day my own children will ask me about it too, I am strong enough now to accept that 'this is me' and via research I've been able to understand it more, just like I am currently doing for my daughter's Sensory Processing Disorder (SPD.)
Who knows if there's any treatments out there now, I'm actually embarrassed to ask as I worry more about my children than myself, maybe one day I'll pluck up the courage to ask!
Here is the copy of the post I wrote to thank the charity Family Fund:
This is my daughter Amber (4) she has Sensory Processing Disorder (SPD) with traits of ASD and ADHD. I hadn't heard of the Family Fund until I took Amber to a play therapy centre and the Specialist teacher at the SMILE centre at ARCOS in Malvern, Worcestershire suggested I should try and apply to Family Fund. I was desperate to provide Amber with equipment to help keep her calm, but as we're a low income family I was finding this difficult. My daughter was given a grant for sensory equipment and toys from the Learning SPACE and further sessions at the SMILE centre where my daughter can explore bubble tubes, role play, snugs, musical instruments, etc. My partner Paul and I were delighted that our daughter would benefit so much from this. Already we've noticed that Amber is calmer when she's accessing the toys and equipment. She explores the scented doughs, squeezes and pulls stretchy men and butterflies. She goes to sleep with stars on her ceiling and a rainbow on her wall! She is fascinated by squeezing the Gelli Baff and Magic Snow, and is calmer from watching the gel droppers in her 'calm' tent. I'm currently logging the success of this equipment via my personal Blog and will also do so when she attends the play therapy centre - I'd love to give you feedback on that too :)
I've never been so greatful for anything in my whole life, it makes such a difference to a little girl who finds it difficult to control her emotions and frustration. Thank you so much for making a difference in my child's life Family Fund :)
Above picture shows Lavender scented Modoh which I'd never heard of, when squeezing it gives off a calming lavender scent it even worked on me!
The yellow dough is scented with banana and I'd never come across Gelli Baff before but It suggests putting it into the bath but we used a washing up bowl. The crystals expand and Lou enjoyed squeezing the gel it made when mixed with water.
I'll be updating more sucesses in the near future, especially with the musical instruments as Lou has already shown great interest in these!
I've also been asked to join the Family Fund's monthly blog where for June I'll be writing a post about taking a child with additional needs on holiday.
Thanks for reading! :)
We have continued with providing Lou with sensory activities. We've noticed an improvement in her behaviour when absorbed in these activities.
I used washing up liquid with sand to make it foamy, the texture was very soft. Lou preferred to tip the mixture out and stamped on it, as again, she wanted to feel the texture using her feet!
She enjoyed stamping and watching it fly across splashing onto the wall.
I have used these sort of bottles when working with babies. I've also read that they are good for using as 'calm down' bottles. Lou was fascinated with the one which had water, food colouring and glitter in she shook it and carefully watched all the glitter moving around and then carried it around to other activities. It even sat next to her on the sofa!
There are many mornings where I wake up and ask myself: "Can I really do this?"
Especially when I'm at my most vulnerable, sat on the toilet being repeatedly smacked, slapped and screamed at!
I have never been comfortable with any sort of confrontation all my life, I'd normally walk away, but I simply can't, I have to face it head on!
I have an awful feeling that I'm scared of my own child, I dearly love her and I find myself ridiculous for even feeling this, but I really do hate being hit.
I see her only a few seconds later playing so peacefully with a puzzle, a picture of calm and wondered why, only in those few seconds ago she was in such a rage.
I find myself like a broken record repeating the same phrases over and over, I'm sick of the sound of my own voice!
I wonder why she responds so well to an early years setting, showing no anger or frustration. I am confident to now tell myself that it's not my parenting!
I tell myself that I've researched that children with SPD hold in their frustrations and anger all day and offload in the place they feel most comfortable. I know that she is emotionally attached to me in a very different way to that of practitioners in her setting, she doesn't have to seek my approval - she is aware that I will love her and be there for her unconditionally. Its still difficult to accept but then I do tell myself:
"Actually I can, and will do this."
I've recently been researching about giving Lou a 'Sensory diet' at first I thought it may be food related, after not hearing about this before. It is in fact a range of activties and/or methods to help with her constant 'sensory seeking.' My goal with (hopefully) better weather is to provide Lou with more 'messy play' and hope to purchase a builder's tray to help contain these activities! Today I gave her dried rice and pasta in a bowl and she decided she wanted to tip it all into her water tray! She then got her feet in so she could feel the texture of the wet pasta and rice!
More activities like this to come!
Lou was absoutely absorbed in the activity for 30 minutes!
I believe strongly in getting things out of my head and vent via this Blog, a head full off overthinking and bad thoughts is never a great place.
I want to explain to everyone why I get so angry and pent up, maybe one day I'll have the strength to do this, but for now I've decided to write how I'm currently feeling into a poem..
There's a reason why...
There's a reason why I don't like it when my children cry,
There's a reason why I attend to their every need,
There's a reason why I put their needs before my own,
There's a reason why I'm careful who I leave them with,
There's a reason why I check on them at night, constantly
and just watch them sleeping, and breathing.
There's a reason why I get up every morning,
no matter how rubbish I feel,
There's a reason why I talk to them, read to them,
give them as much time as I physically can.
Yes some people may think I'm mean, possibly
extreme, I've been called ungreatful for 'all that
I've cut people out that make me want
to scream and shout.
But if they only knew what I do,
would they understand then?
There's a reason I kiss them, hug them and
show them I love them,
Isn't that what every mother should do?
Sadly, not true and this is what breaks my heart.
My job here as a mummy is to protect, and will do
that no matter who gets upset.
Yes, I worry, I fuss, and clean and scrub,
I think about my children day and night,
sometimes I struggle to sleep,
I want to do my best, I want to make them happy,
I will think about their needs until my very last breath...
There's a massive reason why.
I'm realising why Lou and I sometimes clash, but also
why I can understand some of her frustrations and the way see perceives the world.
The above photo shows Lou (left) and myself (right) both at approximately 15 months old.
This is whwhy we can clash:
I therefore cut a lot of Lou's labels out and buy her soft clothing such as leggings and T shirts, I bought her some sparkly tights, then remembered how itchy I'd felt in some I had!
I can understand why Lou gets anxious before leaving the house and therfore use visuals and always reinforce what is going to happen, I avoid crowded places as I think if I can cope, neither can Lou. We tried ballet classes a few months ago, turned out to be not for Lou! But the waiting/changing rooms put me off from the start, crowded, can't move, kids stepping over, pushing into us, people moving our belongings - I couldn't wait to get out, and Lou had the mother of meltdowns once we got outside!
I am so passionate to continue my fight for help for my daughter, even though we are opposites - we also feel the same a great deal of the time! Understanding is key!
I am feeling emotional and feeling that I need to vent!
Even though Lou's paediatrician appointment went really well and there are things being put into place, I still find certain daily occurrences really difficult to deal with.
Even just putting on socks and shoes in the morning becomes a major issue, I offer my help and then I get a pushchair shoved into my leg!
The hitting, kicking and pushing is really taking it toll, I repeatedly get kicked in the back for not allowing Lou to have the tablet. She has become obsessed with it and I'm keen to not allow her to stare at a screen constantly, it is easy to stare at a screen but I'm keen for my child to not experience the same awkwardness as I have in the past with social interaction.
I'm not asking for a miracle cure, for also repeatedly hurting her sister, I know that there are people who have more challenges than us, but its so difficult when I've also got so much going on in my head at the moment and a lot to deal with, that over time will hopefully improve.
Thank you to my Blog for being a productive place that I can vent!
I get so frustrated with myself when I forget certain information.
Whenever we see professionals such as the paediatrician I freeze and completely forget things they may need to know! I do write lists upon lists but sometimes I still don't get everything across!
When I was asked: "does she line objects up?" How could I forget that everytime Lou visits the bathroom she gets all of the bath products out and lines them up as the picture shows!
I don't think it makes a massive difference, but frustrating nevertheless!
After reading up on Blogs I have tried to make some changes to include all my own photography and quotes to avoid Copywriting. I read an interesting article about using Inspirational quotes from popular pinning websites. I've always been intrested in photography so I thought I'd give it a try! All photographs produced my myself have the name of my Blog on them and these images remain my personal property, they should not be shared or copied without prior permission from myself.
New contact details:
Any help I asked for from then on from health visitors and the local children's centre came to the conclusion Lou's behaviour was down to our 'parenting skills.' Any behaviours I described they came to the conclusion this was "normal for her age." I was fed up with hearing this over and over again. I completed 2 different parenting courses, some changes were made including the use of a 'Visual Timetable' and signing words, we also ensured that we worked as a team, with clear and consistent boundaries. With the continuation of 'normal for her age' Lou's behaviour, especially at home and when out in public became worse rather than better as the professionals believed it would as she accepted Moo and that she was here to stay in our family! I finally cracked and wrote an 8 page letter to our family GP in December 2015 as I struggled to get Lou down to the GP's surgery on my own. Our family GP, from looking at all the evidence could see that it was in fact Sensory Processing Disorder that Lou had. The GP referred her to an Occupational therapist. By early March 2016 I still hadn't heard anything about this referral, so I chased it up to be told that Lou was to see a Community Paediatrician in April 2016, this was news to me! I'd visualised Lou being given to support, in particular how to teach her that she's putting on too much pressure onto Moo and other people. Only time will tell if we get the appropriate support and advice to help Lou as she grows. I read another article where the parent believed that the professionals she took her son to see were unwilling to diagnose him with anything as they believe she was just trying to get Disability Learning Allowance. We already know that we don't qualify for this so all we are after if some answers to help cope with our daughters condition in order to help her in the best way possible.
SPD is not as well known in the UK as it is in places such as the USA. I'm researching SPD to understand it more and have joined support groups in the UK and USA.
Here are the traits that Lou currently displays, in a nut shell, there's more in the folder I'm collating for her!
There are many other little things that crop up, to this date no professional has read all of this info, when they ask the same question every time: "So... what is she like?" I just freeze, mix my words and they end up putting words in my mouth! And I end up agreeing with them every time!
This time I hope to be prepared and send on all the info I have collected a week before our Paediatrician appointment so they can then ask me questions based on all the info they've already been given. Often I'm told that this behaviour is 'normal' I'd love to hear from other people with experience in SEND, SPD etc, to hear their views. Because I was told it was my parenting that was at fault I completed 2 different parenting courses and, yes things have improved but its not cured all the issues, we still have lots of tantrums, anger outburst and
Reading all this back, I realise how similar I am to Lou and that's maybe why I 'get' her, e.g. I remember being so distracted through a whole school day as a label was scratching my neck, I found it so hard to concentrate on anything else. My parents also remind me now how when I was Lou's age I would change clothes at least 4 times a day, even if there was a speck of dirt on them!
As well as being so alike we are also different in many ways, e.g. Lou likes making loud noises, I like the quiet! I find it extremely overwhelming if both children are screaming and crying! Lou likes the light, I like the dark!
But I continue to fight for my child to be heard.
Daily struggles as a parent:
The most rewarding, yet also most difficult things I've ever done.