The elf princess is 9

Every year I ponder what to write about my beautiful girl. Every year she changes she grows and she becomes more fierce and even more of a heroine in her story of life. 

If I was a little girl I’d want to be your friend. They say people who are austictic can’t have empathy…. They are always wrong! You are the kindest most empathetic person I know. I often see the pain in your eyes and heart when others are hurting. Wanting to help everyone and being sad when you can’t. When your mid melt down and stop because you know someone else is close by is upset, you forget your own woes and comfort them letting them know that it’s ok! I still worry that you are too special for the world and your soul I know has been here before. I am overjoyed by every small step and bit of progress you make and what may seem insignificant to others is like climbing a mountain to me. I only hoped you would be the bright, intelligent worldly girl you have become. I hope still that life treats you kind and you overcome whatever rocky roads may lay ahead. I promise to always be you biggest cheerleader and brag to everyone and anyone that will listen how fabulous you are. Another year of you being fierce, amazing and growing with the superhero powers!

The elf princess is 8 😍

Every year I write a blog to document the year that’s passed when I first started writing Kodi’s birthday blog entitled the elf princess I didn’t know I was going to be the mum of a very special girl. I didn’t know she would later be diagnosed with Autism and I didn’t know that I would turn out to be a bigger warrior and advocate for special needs.

After the dark days of covid and finally some reality being restored Kodi continued to thrive. From not talking in 2019 we now can’t stop her! From not being able to read or spell she smashes weekly spelling tests and is able to sit for longer than 10 minutes!

The struggles are still there but daily she overcomes milestones and mountains. Days out are easier and socialising with others doesn’t feel stressful. With the support of her school and network of family and friends Kodi is loved for just being Kodi. 

Having autism means trying to balance and navigate the world in a different way through noises that are magnified, through smells that are stronger through words that you take literally. Every day sometimes present new challenges and we try our best to help Kodi overcome these. Some things we can’t change and somethings won’t change because that is life. We help Kodi adapt and don’t shy away from new things she always try and if she doesn’t like it she tried and doesn’t have to do it again.

We have begun to explain to Kodi she has autism and what this means and hopefully in time she can develop a wider knowledge and be able to talk about what this means for her.

Kodi has managed to develop the skills to regulate her emotions and verbalise this when things are tough. This a major skill for any person discussing feelings can be difficult but this also allows her to get the support she needs.

Kodi has helped me see the world in a different way. That child screaming in the shop may be stressed by the lighting or that child who is always in trouble might just need a little more support.

Kodi has lived her best 7 year old life it’s been one big adventure and we hope to have many more.

I always tell Kodi I just want her to be the best she can be she tries harder than anyone I know. For that I am forever proud….

Kodi is 7

I didn’t forget I’mJust really late in my writing. 

How could I forget Kodis 7th birthday blog. 

I am consistently amazed by how far my little Heroin has come. Defying the take each day as it comes and striking gold everytime.

Being happy content and having the ability to have a voice is a blessing hearing her talk to her toys or boss about her siblings are priceless memories that we didn’t know we would have. 

Life has been difficult for everyone and we were privileged to be able to send Kodi to school through those times. In the darkest of times Kodi has shined! The pandemic has been awful however I don’t know if we would have the same bubbly, funny, confident and outgoing child we do now if this didn’t happen! Slowly things have become easier and for her bad days are few and between. 

We have continued our adventure from 6-7 and managed lots of amazing visits up and down the country with Kodi loving to be out and about and happy to have staycations. 

For anyone they didn’t realise Kodi’s hair has finally grown and she is embracing being a curly girl. Although I long for the day she keeps her hair tied back I’m also happy she loves the way she looks.

We have managed to get socks back on and have overcome so many sensory issues it’s astounding.

I’m invested in giving Kodi the best life experiences possible and even if sometimes she’s not bothered we will try…

Now back to having fun!!!!!

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And she’s an adult!!!!!

Wow I have an 18 year old, that’s 18 years of me being a mum. A whole 18 years of having someone else to think about other than myself. 18 years of worrying, sleepless nights tears and tantrums. 18 years of growing someone who is so different but so much like me.

It’s been a journey 18 years ago I was 17 and a teenager mum I didn’t know what I was doing and probably still don’t! A whole 28 hours of labour finally bringing you home to well not much as we didn’t have much.

Being a mum isn’t easy at any age but looking back it was much easier being a teenage mum than it is now being a mum in her 30s. I still get the “You don’t look old enough to have a child that age” my response now is “I’m not”

Kyra was always a bright child, probably to bright with an attitude that I often wanted to strangle but I didn’t and she is still here…

People say when you have kids young you miss out on so much, I don’t feel this was the case wherever we went Kyra followed and it has been my path to support her in living her best life.

The holidays, the days out and the range of activities have caused my bank balance to run dry many a time. Then the clothes ohhhhh the clothes starting off with her at age 3 advising her clothes have to match to the £400 pairs of shoes she now owns…I preferred her in river island mini clothes gone are the days when I’m getting a cheap outfit on her.

Kyra is her mother’s child she has always been passionate about doing well, doing it right and doing everything…. She’s strong willed and never gives up even when she thought she couldn’t she did and succeeded.

We have had so many journeys starting nursery, into infants then juniors. Leaving school to start secondary becoming a teenager the friendships that have come and gone… I tell you now what I have always told you some friendships aren’t meant to be and those that were there at the beginning may not last till the end. Special people stick around and it’s those important friendships you will treasure.  You have been lucky to see my friendships grow and my friends support you and us through good and bad.

Your journey ventured through secondary where you achieved amazing GCSES and finally to today where in Six form you worked hard to gain results to get into your chosen university.

Covid didn’t stop you from still trying and developing yourself learning to cook and supporting your siblings. Being a sister to a child with a autism isn’t easy but your try your hardest to support Kodi even when your often struggling yourself.

We will miss you when your gone on adventures new but we know no matter what you will do your best. The angels that look over you would be proud of the strong independent person you have become.

Everyone who knows you is immensely proud of what you have achieved and we couldn’t have hoped for a better first born. Now if you can just be nicer to your brother you would be perfect 😂😂😂

Then she was 6…..

I’ve spent the most of lockdown listening and reading about how stressed people are with their child/children. No judgement and no mum left behind because we all know our kids can be dicks I have been there done that got the t.shirt… and then there was Kodi! I try my hardest not to complain about her weird and wonderful ways, meltdowns and lack of ability to cope with life. Because when your child struggles, each day is a blessing that we shouldn’t take for granted!

You get what you get and you don’t get upset and this is how I view my life as a SEN mum.

Yes there are  days that are bad but her smiles out weigh those days!!! Often she is a monster a Jekyll and Hyde often compared to the little girl with the curl in the nursery rhyme! When she was good she was very very good and when she was bad she was horrid….

But for every three bad days we have one amazing day and the amazing days are what we live for. The sen mums club is a unique club of mums whose children usually have the following a long term health condition, physical disability and some kind of social communication, non neuro typical condition. We look we smile we despair, we cry, we laugh and we generally get on with it because the battles are hard and the fights are long. Sometimes the battles are not just with your child they are with the world that surrounds and makes it difficult for your child to just be.

I digress Kodi is 6 and we all know what a journey those 6 years have been. If you haven’t read the other 5 birthday blogs you have a lot of catching up to do.

I probably always say I don’t know where the time went and I worry and panick and have sleepless nights over how kodi will progress now and later in life. As always the elf princess is the shining light at the end of each tunnel and continues to show autism is her super power.

Since Kodi turned 5 she has received her Education Health Care Plan which outlines her goals and what support she needs. This gave us and the school clear focus on the direction she needed to go. Intense learning began and she was getting there but still struggling massively socially. In January we were told that although Kodi is doing well academically socially she is behind her peers and socialising seems to be lost. This means she will fall behind her peers and struggle to meet her expected emotional age. Meaning she will be left behind. We were asked to consider looking at special needs schools which is something we had always knew would happen eventually. I cried privately and cried some more moving schools means moving life a school we know and love and a school where Kodi is happy to a place of the unknown. But some things have to happen. We found a specialist autism school and booked a date to visit then POW…… Covid 19 Lockdown.

In the beginning we wanted to send Kodi to school but we decided we could manage at home and persevered with The Barnes family school. Where every child will try their very best and be the best that they can be. I turned into that mum I was years before with more patience and resilience but scared that if my child left the house she would lick something a catch the bug!!!

Kodi stayed in our home for 5 weeks before I gave up and let her venture up the road with her dad and siblings.

Kodis routine was 121 sessions every morning maths and english followed by arts and crafts. We must of done every art activity going attempting to home school 3 kids whilst working two jobs is not what I signed up for!! By week 1001 Kodi went back to school 2 weeks before May half term she managed 2 half days and 4 full days. Taking it all in her stride and making new friends. By the time school resumed we had managed to support her to learn to read, learn her 5 times table and hold a better conversation than before. We survived this time with hardly any meltdowns and as close to the routine as possible.

I worried like we all did about my child going backwards but when your child has a super power they will excel!!!

Lockdown for Kodi meant calm, it meant family time. Eventually getting back to nature visiting half of Kents country parks. It meant she had more teachers and her voice could be heard. After another few months of school and back into a new routine she flourished most sensory and social issues were better, learning now more than ever was fun.

I don’t know where Kodi will be this time next year, we are not now where I expected to be. (We are further) Kodi continues to amaze me everyday she continues to be everything she typically isn’t supposed to be loving, kind, empathetic, caring, outgoing and the list goes on.

This year Kodi had two birthdays a bit like the queen, we celebrated her diagnosis day with a rainbow cake. Why would we celebrate her having autism is I know what most would think. The celebration is about saying it’s ok to be different, it’s ok to struggle, it’s ok to have down days. A diagnosis for Kodi has meant she has support where she can now achieve whatever she wants. Some of the most talented people in the world have autism somethings you have to embrace so you can shine.

As always Kodi is my superhero 💜

 

Staying alive at 5

Feels like a life time ago the elf princess entered the kingdom with the other fairies and elf’s.

Sometimes my heart aches to see how quickly she is growing up but then I am filled with joy as I know she has overcome so many challenges and continues to grow!

Kodi remains the most amazing beautiful child everyone who meets her instantly falls in love with her personality. Although she is still struggling with her speech she has become more funny and more demanding.

Kodis current favourite phrases are “I’m not your friend” and “I’m going home” the later often said when she is at home so she needs to work on that one. Everyday has its ups and downs the highs are often Kodi showing us she actually can do those things she has refused for so long. The downs are often me laying on the floor or bending down to comfort Kodi after a meltdown.

In September Kodi started reception class after her fourth bday with a rocky start. She spent most of her time in nursery still frustrated by her lack of speech and often confused by what she was expected to do. Gradually and with the help of 121 support in the space of 9 months Kodi has learnt to spell her name, recognise letters of the alphabet, developed her words into sentences and learnt to socialise. Kodi was diagnosed with Autism in January and since then has blossomed into an even bigger personality.

We started Kodi on swimming lessons she now has 121 Sen swimming lessons weekly the first eight sessions the instructor probably wanted to shove her head first into the water. There was a lot of screaming and shouting but in time Kodi realised and remembered swimming is fun and now with no drama completes 30 minutes of swimming without us in the pool and with only a float as support.

The fact Kodi has realised there are other people in the world around her is amazing and not to be met by silence is another gift we are grateful for. Kodi has learnt to recognise the pain of overs and comfort people when they are sad. Kodi understand

Kodi has had countless appointments and this year and her small head issue remains a mystery but all issues aside We wouldn’t change her for the world 🌎

Kodi consistently surprises us but what she is now able to do and things that seemed so far off are now seeming possible. It’s important to be in the present and not worry about the future what will be will be and with support Kodi will continue to be amazing. I often say a daily mantra to Kodi “you are amazing” and get her to repeat this back if I believe in her she will believe in herself and we can speak a positive journey into existence!

I hope in the next year Kodi might keep still for long enough to notice what she is missing out on….I also hope that her speech develops so that she isn’t isolated. For those parents who have kids who don’t shut up don’t knock it, I long for the day Kodi can have a back and forth conversation without forgetting to speak or walking off in a complete daze.

I want everyone to love Kodi as much as I do and to be able to provide her with support when needed. But most of all just treat her like any other child remembering that she is just that extra bit special. 💜

Knock on the door look who is four!

Yes people another year and Kodi is now 4!

We have come so far this year and even though a lot of the time it’s been three steps back and one forward we got through nursery and Kodi didn’t get kicked out (thank fuck!)

When you know your child has been sent to test you and then the nursery believes she was sent to testy them you know you wasn’t making it up. 

We told them before she started she wasn’t easy she’s been here before and likes to just do her own thing until she is happy and then she may comply! We have had an endless list of tantrums, refusing to walk, biting, throwing things, food refusals and general not listening which at one point they thought Kodi maybe deaf! She’s not by the way she passed the hearing test with flying colours she just has selective hearing but also can only concentrate on one thing at a time. 

If Kodi was my first child I would have been probably deemed a bad parent and been put on the parenting course. Glad her brother is her opposite at school….

We have been to more doctors appointments then I can count paediatricians, occupational therapy and speech and language all which Kodi took in her stride and complied when she was happy to. The older Kodi has got the clearer it is she is different! I like to think she’s different in a good way but with every good thing comes a struggle. Low concentration span if she is taking a normal route and is distracted it’s a melt down! Crowds can be testing and if she’s unprepared it’s a melt down! Dinner times she’s doesn’t want to and actually can’t sit still. During the school day she often struggles to communicate and can’t sit down for long periods which can be upsetting and yes you’ve guessed it leads to a melt down.

Kodi has proved that despite her struggles she has the ability to overcome things. She is now talking at school after refusing to say a word to teachers for 9 months. She now can wear anything we put on with no battle! She loves dresses and loves posing for pics! 

She can retain information and is learning she just is a bit slower than your average child (who wants to be average anyway)

She’s funny, loving and wants to have fun in life just like most kids her age.

Some of Kodis highlights this year have been 

School photo day where she pulled a face that looked like she shit herself and covered her eyes in the sibling photo.

Me dragging her down the hill into nursery daily whilst she throws herself on the floor!

Kodi generally making me look stupid by doing the opposite of what she is capable of doing! 

We are now waiting to see if Kodi has autism and I’d first like people to stop denying she has it because it’s highly likely she has and we can’t change that! I can’t explain all her traits I just know that day to day it’s a battle for us and her that is both frustrating and sometimes sad. If she doesn’t say hi don’t be offended and if she takes no notices of you at all she is just in her own world! If she’s having a melt down don’t stare! Also don’t get involved try to calm her down I can manage…. Treat Kodi just how you would treat any other child but do acknowledge that sometimes there are things she just isn’t going to get and that’s ok. Always remember being different is good. Who wants to be in a world where we are all the same.

What I do know is that if I could change things I wouldn’t as Kodi is Kodi and those that know her know she lights up a room. She dances at parties, she’s beautiful, she adores those she loves, she gets excited and has the most adorable smile. 

No matter what the outcome I’m here to make sure Kodi has the most amazing life and that nothing stops her from being who or what she wants to be. 

Kodi teaches me things all the time she has helped me be slightly more patient, she has helped me to worry less about things I can’t control and she has also taught me I do need support because without it I may crack up! I have also learnt what we go through on a day to day basis with Kodi isn’t really bad at all and there are other parents struggling with things we take for granted.

I hope Kodi continues to help me grow as a person and maybe sometime in the future she will let me put a hairband in her hair 😂😂😂😂

 

Let me sleep

I think for years when people have asked me how I am I’ve said I’m fine just tired. I’ve felt tired for years and not because I’m Ill its because I take on the world and am a martyr at doing it all without asking for help. Since I have had the elf I’ve got better, I have had no choice as not asking for help would probably mean finding me in the mountain of ironing in a hoovering mess trying to wash up last night’s dishes whilst changing a nappy! (All things I really need to master) I have learnt from elf that nothing will ever get done but most importantly I have learnt that sleep time is more precious than ever. I won’t lie when my friends said there babies slept through the night I was happy for them, but now none of us sleep I’m glad I’m not alone.

Elf is asleep now but anytime between now and six she will probably wake anything from one to five times. She’s fifteen months she should be going through the night but not this one. When they said it was because I breast fed for too long I ignored it! Shes not getting enough, the breast milk doesnt fill her up… but three months later and only change to date is she slept twice through the night. Third time lucky we knew she wasn’t going to sleep all day like her brother or sit quietly like her sister being lucky with what you have we ignored deciding to complete our family with an angelic looking non sleeper!!
I worried the other day whilst reading an online article that children who don’t sleep have serious mental health problems later in life. I then thought half of the people I know on Facebook have a child that doesn’t sleep. I then thought what about the mothers of these children getting even less sleep surely our mental health is a concern. My child doesn’t sleep she whines throughout the day for two days solid on third day she sleeps. I on the other hand can’t sleep as I am playing catch up with washing, ironing and cleaning that I couldn’t do because she wouldn’t let me move! I’ve tried that purple Johnson’s bubble bath the warm milk and a routine and guess what super nanny it doesn’t work as some babies just don’t sleep good. I have it easier than most waking nights can mean anything from moaning to a full on wide awake hissy fit. It mostly results in her being gently rocked back to sleep however this can happen a number of times and by six there is no point in trying any longer.
She doesn’t sleep much in the day either today we have been swimming which used to tire her out she has had 15minutes sleep all day! The motion of the car gently rocks her off and when she is carefully and I mean carefully like the queens crown, lifted out she wakes most abruptly leaving my daily tasks unacomplished.

I have gym run soon and have just given her the evening bottle one of her three a day. We are quietening down and our routine stays the same. Instead of sitting still drinking and drifting off she is running around and trying to climb into her electronic mini Cooper (battery is currently dead and she’s trying to work out how to get it started! ) The bottle has given her a new lease of life like some kind of party drug, I’ll await the come down and prey she goes down for the night.

Working night shifts she was always lively at night moving around having a one baby rave in my stomach!

I hope as she grows she will get better this week she has managed to let me lie in past seven twice even though she still has woken through the night. Maybe she just doesn’t need that much sleep, maybe she’s just so beautiful that beauty sleep doesn’t apply💖

Sent from my Samsung Galaxy smartphone.

 

So his 10 and I managed not to cry with his gorgeous curly locks shadowing over me the little shit woke up at 5.45 and I told him politely to go back to bed for an hour.
At the end of the evening at dinner he said mum birthdays are the best when spent with family and my heart melted not just for all the party’s I paid 100s of pounds for but also for the sweetness in the boys little heart.

I often wonder what he will be his the smartest kid I know asking me maths equations at 7am whilst brushing our teeth and telling me scientific facts before bed.

My worst fear is failing him I want him to live his dreams and be the best he can be. I want him to fulfill his passions and to live really live like the living we have been letting him do since he was born. I want him to be carefree and even make a few mistakes. But we live in a world where we expect our boys to be men I just want my boy to be my baby. To grow a boy into a man is tough it takes a great strength to lead a boy down the path to manhood. We have no ritual in our British society apart from at 18 you can have a pint….. I want him to be the type of man that is strong enough to cut the cord when his baby is born and to cry the same tears his father before him did joining in that emotional journey and making he a man. I want him to be man enough to use protection in his youth and be the one to bring it. I want him to
Be the type of guy that is ok if a woman wants to go halves on a meal and have the money to pay if she hasn’t. I want him to be the gentleman that opens doors for ladies and lets the elderly on the bus first. I want him to be sensible another not to be the boy racer and not be embarrassed to dance in the middle of a crowd.

I want my man/boy to grow in confidence and shine. I want him to know that as long as he is good I’ll always love him and no matter what he will always be my son.

10 is the age of responsibility and my son is still a small boy he wants to kick ball, play computer and run free in the wild. I want him to be a child forever but the world wants him to grow up……..
At the end of the evening at dinner he said mum birthdays are the best when spent with family and my heart melted not just for all the party’s I paid 100s of pounds for but also for the sweetness in the boys little heart.

I often wander what he will be his the smartest kid I know asking me maths equations at 7am whilst brichsing our teeth and telling me scientific facts before bed.

My worst fear is failing him I want him to live his dreams and be the best he can be. I want him to fulfill his passions and to live really live like the living we have been letting him do since he was born. I want him to be carefree and even make a few mistakes. But we live in a world where we expect our boys to be men I just want my boy to be my baby. To grow a boy into a man is tough it takes a great strength to lead a boy down the path to manhood. We have no ritual in our British society apart from at 18 you can have a pint….. I want him to be the type of man that is strong enough to cut the cord when his baby is born and to cry the same tears his father before him did joining in that emotional journey and making he a man. I want him to be man enough to use protection in his youth and be the one to bring it. I want him to
Be the type of guy that is ok if a woman wants to go halves on a meal and have the money to pay if she hasn’t. I want him to be the gentleman that opens doors for ladies and lets the elderly on the bus first. I want him to be sensible another not to be the boy racer and not be embarrassed to dance in the middle of a crowd.

I want my man/boy to grow in confidence and shine. I want him to know that as long as he is good I’ll always love him and no matter what he will always be my son.

10 is the age of responsibility and my son is still a small boy he wants to kick ball, play computer and run free in the wild. I want him to be a child forever but the world wants him to grow up……..

I wrote last year treat your boys like kings and put no man before him. I don’t want my son to one day think it’s ok to pick up a weapon (yes I’m getting dark) I want to give him the tools in life to stop him from doing that be self awareness, resilience or common sense. Learning doesn’t stop at school protect nurture and grow our boys need help…..

 

Elf turns 2

The Elf Princess has been guarding her Kingdom for two years!!!!!

Ive decided to do this every year write down the memories of the past year so maybe one day Kodi can read and realise what a terror she was (apparently she is misunderstood)

So the journey to two or 36 months if you a crazy month counting mum has been one of adventure. You had already mastered crawling, scaling the stairs  walking and practically running so whats Left? At 12 months those wretched teeth that have been coming since the begging of time finally made an appearance.

You had your first trip to A&E with blues and twos after having a fit and me and dad thinking you were not going to make it (calpol is now out best friend) The scariest time we have ever had as parents and you being you bounced back to part of your normal self.

I think the next few months you become slightly withdrawn and clingy who knows what was going on in your little head when you had the fit but somehow I think it did a bit of damage to your confidence. Which after a few months came back in leaps and bounds and your back to your fearless self.

If you need help you call your Big Brother, if you need anything you call him he is your ultimate protector and your right hand man. You adore him and look for him when he is not here. (Good luck with trying to get a boyfriend or go anywhere without him stalking you)

You have a beautiful Bond with your sister #demgirls although theres a twelve year gap you both spend time being silly taking selfies and belly laughing. Of late you have used her as a teething ring so if you could give the biting of her hand a break I’m sure she would be greatful.

You have your dads silly ways (Lord help me thats two out of three) Making a joke of everything and clowning about. Wanting everyone to copy you and having a tantum when it doesnt go your way (You get that last bit from me)

You have learly lots of new words your fave mini sentence is “go away”. The monster you are you know a number of words that are related to getting in to trouble. (No not swear words)

You are the most defiant person I know, when you want something you have to have it no matter the obstacle. You were like this from day if you wanted something you would wiggle to it no matter how long it took! Mostly you want stuff you shouldnt have and its an on going battle, currently No is the word you are most familiar with. Stubborn is what I will call you from now on.

You have a love of ripping books and no matter how much we try to stop you you continue. Chewing on a book is something else you are fond of I do hope that any knowledge is being digested!

You are a true summer baby and llove being out side, when there you smile at the sun and spend hours in the garden mostly trying to dig up dads plants. Last week you killed a spider which was a Big acheievment and I for one am glad I have another spider warrior to save me.

You love swimming and paddle about in the pool like you own it. You have lots of baby friends and love play dates with them all.

You have finally realised I need sleep and dad needs it too! You now thank god sleep through the night but are still an early riser. When you realise lie ins are what’s needed in life I will be at the end of your bed mostly jumping!

Potty training has been fun you missed the potty this week and ended up sliding around the front room in your own wee. Admitedly we are being quite relaxed about the whole thing and taking a when you are ready approach. (You always seem to take the lead on things).

You refuse to have hairbands in your hair and thats just the way it is when you allow me to slip one on its a miracle. Wearing pretty dresses doesnt go down well either but you are getting better at this (and i will force you until you are old enough to refuse )

We had your second Holiday and cant wait till Christmas for all the suprises and fun we have planned. We have had so many adventures and so many more to come.

You have reminded us that every child is different and although you are like your Brother and Sister you are in no way the same.

You have reminded us what being a parent means sleepless nights, smelly nappies etc but the best bits more the fun the belly laughs the joy of exploring and making new memories all over again.

You are still a Big bold and beautiful character we hope you continue to have your own mind and be the person that you want to be!

We love you our elf princess let the road to three begin x