Login
Login

Jill Windle

Please Help Me
Reach My Goal

Raised

£1,169 + £185.24 GiftAid

My Goal

£100

Select amount to donate

£12
Helps address the sensory needs of autistic children.
£16
Help autistic adults develop their skills
£22
Help autistic young people make friends and overcome loneliness
£27
Help us provide families with the support that they need

Or enter an amount

£
Donate

All donations in GBP

All payments are secure & encrypted

Total 76,560 steps

My goal 10000 steps

Dancing with my eyes closed

Autism Awareness Week. 
What an appropriate title including the word Awareness. How many times have you been in a supermarket, a play centre or a park and seen a child kicking off? What was your first thought? I wish they'd shut that kid up, if my child behaved like that I'd drag them out, how embarrassing having a kid like that. I admit I've  had those thoughts, never thinking that the child could have Autism, infact it never crossed my mind. That's why it's so important to raise awareness of Autism. 

Lacey certainly has her moments like that. People staring and giving you the look. You think to yourself I don't care what people think but deep down you do. 
One minute you can be just walking round with Lacey the next minute she could be lashing out, one minute playing next minute having a tantrum. Life is very frustrating in lots of different situations. Self harming, yes self harming, scratching her face, pulling her hair out, she's done both. Fortunately that has now stopped, but can you imagine witnessing your child do that. Sun hat pulled down over her eyes so she can't see what's going on around her when you go out. Never having had a hair cut because at this moment in time that's just not possible. Constantly repeating things. 
I hope I've brought you all some Awareness of Autism. 

As our last days in New Zealand marched on I had nothing but admiration for Paul, Hope and Olivia. Their whole day, week, month evolved around Lacey and her needs. Every detail of the day planned out to meet the needs of Lacey. 
We have nothing but amazing memories of our trip. One day on our way back from a trip out, Ed Sheerans song Dancing with your eyes closed, came on the radio. Olivia and Lacey began to sing along. I whipped my phone out and began to record them. For that few minutes I never took my eyes of Lacey, the joy in her face as she sang with her sister was priceless. Such a simple thing but truly heartwarming. ( ill add the video to my page on FB for you all)
Our final day and time to head on home. We said our "see you laters" and hugs all round. Got into Paul's car and frantically waved at Hope, Olivia and Lacey. Tears rolling down my face. I could see Olivia was crying and Lacey had her head buried in Hope's shoulder as drove up the lane. It's bloody hard leaving them all. 

It was back to facetiming. Remember in one of my first blogs, when I said about preparing Lacey for our arrival and she would say "no come to Laceys house". Well now it's "come back". And guess what, she even loves Grandma now. 
Hope sent me a video about 3 weeks ago of Lacey in the car going to daycare  I'll also add this to my page( Hope is wearing a face mask because she had Covid)
Just remains for me to say, thanks for reading my blog. I hope I've given you a little insight into life with Autism. Thankyou to everyone who has donated, together we raised almost £500. Jill xxx

Our little miracle, ♥️ Lacey Jaye.

From being a new born Lacey has had her fair share of medical issues. As she grew her mummy and daddy sensed that Lacey was struggling both developmentally and in her general health. This all came to head in September of 2022. 
We had just arrived in Ibiza and on our first morning there I got a phone call from Paul. I've never heard such distress, Mum it's Lacey, was all I could hear through the sheer panic in Paul's voice. Calm down Paul, I can't tell what you saying. It's Lacey, she's collapsed, she's not breathing, we are at the hospital now. Paul began to tell me, as best he could what was happening. I'll have to go mum, I'll ring you later. We were all beside ourselves. At the other side of the world and you just want to be there for them. 
The words below are an account of that day from Hope. 

Monday 19th September, a day i never wish to re live, yet i re live it over and over every day.  

The morning that was, i took Lacey to the doc as i felt something wasnt quite right with her, i was in and out in 2 minutes with these words of advice "shes fine, and your testing her for Autism, i dont know why, shes absolutely fine"

Given the reassurance off we went to MacKenzie Centre for Monday morning play where Lacey just seemed to be walking around in a bit of a trance. I knew she wasnt okay and thought maybe she is just tired.  I decided to take Lacey home early so she could have a sleep. 

We hopped in the car, she snuggled into her sleeping position, arms straight by her side and head looking out the window with her eyes stearing up into the sky. Perfect, she was off to sleep. 

5 minutes into our drive i turn to look at Lacey as we pass the ANZAC memorial garden, Lacey was still in this position, i thought it was strange but assumed she was just fighting her sleep. I decided to call my friend and have a catch up with her, i didnt look back at Lacey until i was on Glen Lynne ave, so maybe another 5 minutes up the road. This time i look in my mirror to see Lacey is still looking  up at the same sky with her eyes open. I paused my friend mid conversation and turned to Lacey to find that she had a swollen cheek, red blotches around her neck with her eyes still open. I slow down, call her name in panic. She did not respond. I slammed my breaks on got out of the car, went to her to find her eyes rolled back in her head, she had blue lips and was unresponsive. 

I scream to my friend who was still on the line to call an ambulance, i picked Lacey up and she was a dead weight in my arms, i ran holding my floppy unresponsive child to the closest house and banged so loud to help, i saw someone run past the door but not answer. I ran to the middle of the road and stopped a van and yelled for them to call an ambulance, and screamed at the top of my lungs for anyone to help me. I didnt kno what to do. 

Lacey was just going more and more blue,  it had reached up to below her nose. I sat on the concrete holding my lifeless baby screaming for someone to help. A neighbour came by, and the person came out of their house. One was on the phone to the ambulance and i had the other call Paul Windle  i needed him to come, not to help me, but to come and say goodbye.  This was it. 

At this very moment, i had a thought,  Lacey has never been able to handle grass, the thought of it makes her quiver, she hated it. This is a major sensory of hers.  I thought to lay her on the grass it may do something to her. 

Just after i do that, the ambulance, rapid response team, police, fire brigade and Paul all show up, and she started to seizure.  I had no idea what she was doing, and it still didnt look good to me as she just continued to go bluer but started to froth a bit from her mouth. 

At this point paul grabbed me, the ambulance scooped her up and took her straight to the ambulance and about 6 of them start working on her. Paul and i watch as they cut her clothes from her, try and clear her mouth way, drill into her leg to get to her bone to put medication in right away. (Yes, i said drill, like your drill inside your garage, it looks and sounds just like the same one. I will never forget that noise or what i saw). 

The fire brigade worked their magic on the trafic and closed the road off, whilst police arrest getting to work with closing the roads down. 

They couldn't stabalise her, i jump in the front. There was no room in the back with 3 of them in there already. One police man takes pauls car home, another police man takes paul in my car and follows behind us. There was a convoy of about 5 or 6 including police and ambulances on the way to the hospital.  (I dont remember any of this) Paul explains it being just like a movie. Any turn we needed to make there were police ahead who had already closed the roads off to make a clear path way. We were code RED. I didnt know what to do, i just knew i needed to call our good friends (and pastors) who had not long returned back to the US for them to pray for Lacey. I had no idea that her phone data was playing up and she couldn't get her internet on her plan to work. But in this very instance, she was in a store and was using the store wifi to check out a product review on something she wanted to purchase! As her internet connected through, my phone call went through. It was perfect timing! We juat prayed for Lacey the whole way. 

when we got to the hospital Lacey continued to seizure for 2 hours. We were told that if she has one more she was going to be put in a coma, i didnt know what to do. I knealt down to Lacey and prayed the lords prayer in her ear. Every night we say this to her before she goes to sleep. It was all i had left in me. After i said it to her,  her seizure stopped and she drifted off to sleep. We couldnt believe it. 

Lacey slept for 20 hours after that! Ever since this happened we have been in and out of hospital,  weve had more ambulance rides, MRI's, Lumbar punctures, CT scans, EEG, sedation after sedation, bloods, a few more scares, a few more bloods,  sleepless nights, i had a sinus infection, and it doesnt stop there. Although we are at home and things if you could say look positive, they still arent quite. Her cot is now attached to our bed, we alternate nights to watch her, her anti seizure medication has made her autistic and sensory meltdowns 10 fold. Her sleep pattwrns are all.over the show. Playtime seems to be from about 1am -5am then wide awake at 7. Her poor brother and sister dont know wherther we are coming or going.   If we go out, an adult is to be in the back with her. I am too scared to still have her alone. And to top it off, so far the results have come back as ...... and mums you will cringe when i say this.... A VIRUS..... A blooming Virus!!!! - Encephalitis. 

Since coming back from the UK Lacey has not been herself, she has had virus after virus after virus, this time her body shut down, it couldn't handle fighting it off. 

The twist, we are now working closely with a very well renowned pediatrician who isnt convinced that this was Laceys first seizure. We are now trying to find out what has come first the Seizures or the Autism. This is to be continued.  

In the meantime, i need to thank everyone who helped us on that horrific day, the Emergency services were phenominal! The neighbours and people who helped me on the side of the road, the hospital staff, Elizabeth in the US, my poor friend who heard it all over the phone, and to anyone else on that day. I am sorry i dont remember much at all about who was there i had tunnel vision for Lacey only. 

A massive thank you to my mum for being mine and Paul's absolute rock in helping with the kids the last two weeks, also making sure we have been kept fed, coming around and making sure Calem and Olivia are fed, picked up from school, and looked after. Siane who came and stayed with my kids one night as we both needed to be at the hospital for Lacey, so many more of you who have dropped off care packages, dinners and snacks, and to those who genuinly have offered your helping hands. None of it has gone a miss. We genuinly thank each and every one of you from the bottom of our hearts. 

We have endured ALOT since Lacey has been born (and prior to), me having Sepsis, Lacey having Laryngomylasia, resulting opperations as a new born, her tounge and lip tie, me back in hospital a few more times for further operations, trying to advocate for Lacey with her learning and behavioral aspects and now this. This journey has not been easy to say the least. And these last two weeks have tested our strengths and weaknesses in all avenues.  We have all struggled mentally, emotionally and physically. It has tested us beyond all lengths, and still continues to do so. Although we are in no place to what we were 2 weeks ago, we are still far from okay. And it is okay to not be okay. We wont be okay until we have healed through the trauma and know what our new "normal" is. This goes for the kids to. They still jump if Lacey does something unusual (that can be alot of times during a day with Lacey). But it is something we will work towards together.  We thank you all for your continued support, encouragement, care and love. 

I said right from day one to Paul,  the minute i felt i was pregnant. .. this kid is going to be our "hard" child. I said she is going to be the one that tests us. 

Moral of the story? Mum instinct knows best. Everytime.

#shesamiracle

No, not Grandma, Grandad.

I've never known a little girl love her Grandad as much as Lacey loves Philip.
Every morning he was up waiting for Lacey or Lacey was up waiting for Grandad. They just somehow clicked straight away. 
Grandad push Lacey, that was the queue for Lacey to be pushed around the garden in her old buggy. They must have done miles together round that garden in the month we were there. He'd sit and watch while at great speed she would race around the driveway on her bike and scooter. I'd sit and watch and she would say to me" I'm not playing with you Grandma" then she'd race off come up to Grandad and say" do you want an ice cream Grandad" Please can I have one Lacey? " No, just Grandad". It became a bit of a game, she loved it. ❤️ and so did I. She was well and truly engaged with us both and it was wonderful. 
When Grandad went inside, Lacey would say "Grandma want to play with Lacey"? 
We would play on the swings, trampoline and walk round that garden a thousand times a day. It was magic. Inside she loved playing in her bedroom, we played snakey worm. That involved playing with a little plastic snake, hiding it and finding it again. She loved it. But as soon as Grandad reappeared, it was "Not Grandma, Grandad."
Grandad would read a story, well the first page and then she'd be off again playing with her babies or with her Barbie house but Grandad would continue reading despite the fact Lacey was running round from one toy to another. When he'd finished she'd say "again" and Grandad obliged. 
We never wanted these days to end, back to just Facetiming was the worst thought. 
We were lucky enough to be able to celebrate Laceys birthday while we were there, it was the first time we had been able to do that. A lot of preparation had gone into preparing Lacey for her birthday, she had never really understood the concept of birthdays and fuss was the last thing she could cope with. I mean you know me, I can't help myself making a fuss with the grandchildren, especially on birthdays. But it had to be low key. 
"What day is it today Lacey"? "Its Laceys Happy Birthday". Me, Hope, Olivia and Lacey went to a little play centre to meet Eden and her lovely children. It went really well and Lacey coped brilliantly. 
We had a little birthday tea and Lacey sang along with us all to Happy Birthday. 4 Years old already and a superstar in more ways than one. I'm going to digress away from our NZ trip tomorrow and tell you about
the worst day imaginable for Hope and Paul and the heartbreaking phone call we got from Paul while we were in Ibiza. 

A sisters love.

As the day approached for Paul and Hope to have a well earned break, we were pretty well versed in the importance of Laceys routine. Routine is key for Lacey. We had our instructions of what to do and what not to do, what time to do certain things and all the instructions for Laceys medications. It was quite a responsibility but it was also a chance to build a bond.
We were unsure how Lacey would react without her mummy and daddy being away for 5 days. Doesn't sound long but considering the last time she saw us she was only 2 years old, and we only saw her for 2 weeks,and this time we had only been in NZ for a few days. I imagine It was also a massive thing for Paul and Hope leaving her. But we had our secret weapon OLIVIA. 
Our days with Lacey began around 6am to 6.30am and it was all go. Breakfast, medication, playtime, lunchtime, playtime, teatime, shower time, medication, bed. Sounds pretty straightforward. We stuck rigidly to a routine. Grandma and Olivia played all day with Lacey, grandad was in charge of catering. Olivia was absolutely amazing with Lacey. She showered Lacey every night while I got her pyjamas and creams ready and her medication. There was no way Lacey would let me or grandad get her ready for bed and we didn't want any upset. Then when it was time for bed Olivia would lay with her until she fell asleep. I've never known a 10 year old be so calm and patient. It wasn't straight forward Lacey would play up but Olivia never once gave up. It was quite unbelievable to watch the care and love she shows towards Lacey. 
In her bedroom Lacey has a night camera so she can be observed for any fits. I can tell you now, I never took my eyes off that camera during the night. 
We had our little trips out in the car but mainly we stayed at home just playing, when you've got 3 acres to go at why wouldn't you. 
Lacey only had one meltdown in the 5 days but Olivia was there to calm Lacey, no way could me or Philip could, we would just have made things worse.
We did have a little episode one tea time when Lacey was being silly at the table. Philip got hold of Laceys hand and said right come on you can go in your bedroom until you calm down. OMG, me and Olivia looked at each other and thought here we go, all hell is about to break loose. But no, she just walked with Philip into her bedroom and never made a sound. We couldn't believe it. 
We survived the 5 days and our bond with Lacey grew stronger. Olivias love for Lacey is very special, real sisterly love, I'm so proud of both Lacey and Olivia when their mummy and daddy were away, they truly are very special girls. 

Kia ora. Fun in the sun

New Zealand has the most amazing parks for children, so on our first full day we visited a local park. Lacey is first out of the blocks heading towards the slides. Absolutely no fear that girl. Two seconds on the slide straight over to the swings, two seconds later off again and so it was until she had been on everything. Non stop around the park. The highlight was Lacey stood on a mound in the middle of the park singing the NZ national them. Brilliant. 
Back home and she's non stop, and I mean non stop. The outdoors is Laceys love. We played out for the rest of the day and it was the beginning of a wonderful relationship. I was slowly learning how to interact with Lacey, it was on her terms. Slowly over the next few days we had eye contact, she was coming to me and Grandad asking us to play, so inviting interaction. But in-between all this there was the meltdowns, the throwing things, the No's. We watched Paul and Hope as they patiently navigated through day, how to calm her down, what to say and what not to say. Deciphering between an Autistic trait or just being naughty. It was full on. But a break for the first time in 4 years was days away for Paul and Hope as they headed off to Australia and Grandma, Grandad and Olivia took over the reigns for 5 days. 

Lacey Jaye and my walk for Autism.

Driving down the lane to Paul's , I could see Lacey playing in the garden with Hope. You know when you get a knot in your stomach with excitement and anticipation it was like that. I so wanted the initial meeting with Lacey to go well, but I knew I'd have to be calm and not make a fuss. ( can you imagine not having seen your granddaughter for 2 years and not being able to run up to her and give her a massive hug) Paul gave me a little pep talk. "Don't make a fuss mum just say hello. " 
"Hello Lacey, how are you sweetheart "
I'm playing on my bike with mummy. 
We had a brief conversation which went really well. Don't push it Jill was going through my mind. "Where is Olivia?" I asked Lacey. In her bedroom. So from there it was off to surprise Olivia. She knew we were coming but didn't know when. "What you doing?" As Olivia looked up and so me, she jumped off the bed, ran over gave me the biggest hug. It was wonderful. 
Now the difference in the two greetings was very different but they were both amazingly special. You see Lacey engaged with us immediately we arrived and from that moment on things could only get better, building up our relationship. But as you will see later it was all about Grandad. Aww my gosh Lacey loves her Grandad. ❤️ 

Day 2. Preparing Lacey for our arrival

I'm just thinking how to put into words the feeling of finally arriving in New Zealand and the emotions of seeing everyone. Its quite overwhelming when you love and miss them so much and you can finally throw your arms around them and give them a massive hug. But we knew that wasn't going to be the case with Lacey and in a way she was the one we wanted to pick up, spin around with, give a huge cuddle and kiss to the most, knowing what she was enduring every day. 
We had talked to her on Facetime telling her we were coming on an aeroplane and Grandma and Grandad were going to stay at Laceys house. NO, No stay at Laceys house, was always the reply. Paul and Hope in the meantime had been preparing Lacey for our visit, any change for Lacey is massive, so it was important that she knew we were coming to stay. No surprises. 
Tomorrow I'll tell you about our arrival, pulling up in the car and seeing Lacey on the driveway with her mummy, gosh I'm filling up now thinking about it. 

Lacey Jaye and my walk for Autism.

Today I start my walk for Autism for my Granddaughter, Lacey Jaye. 
In January Phlip and I went out to NZ for a month to stay with Paul and Hope. It was the first time we've been over since Lacey was born and it gave us the opportunity to witness what life is like living with Autism. We had only had a brief snippet of it on Facetime calls. 
To say life with an Autistic child is full on, is quite an understatement. The daily stress for all of them has to be seen to be believed. For Lacey the daily challenges of life are too much to sometimes watch. 
It was a daily learning curve especially for me and Philip watching for triggers that could lead to a complete meltdown and how to deal with them. How to play with Lacey, how to interact with her, what she was comfortable with what she wasn't, all had to be learnt by us. All we wanted to do was throw our arms around her and pick her up give her the biggest kiss and cuddle but that was a no no. Eventually as our stay progressed we hoped that maybe we would be able to. I'll continue our NZ story for you each day during my walk for Autism. 

I'm walking for Lacey Jaye

I’m raising funds for autism! Please sponsor me today! I’m taking part in the Walk for Autism challenge. I’ll be walking 10,000 steps a day from 26 March to 2 April. Please sponsor me. Anything helps . Walk for Autism is a fundraising challenge run by Autism Initiatives Group. Autism Initiatives Group is working towards a world where every person on the autism spectrum has the support they need to thrive, every opportunity to fulfil their potential and a supportive, inclusive community to live in. Thankyou

My Achievements

Added profile picture

Shared page

First donation received

Raised £20 t-shirt is on its way

50% fundraising target

100% fundraising target

Challenge completed

First 10,000 steps completed

Thank you to my Sponsors

£104

Anonymous

£31.20

Anonymous

£28.08

Kelly Nick Brierley

£28.08

Carl Parsons

Good luck

£22.88

Declan Connolly

£22.88

Catherine Riley

Hi Jill, you're doing amazing and all my love to your family and a big hug for Lacey ❤️ xxx

£22.88

Stewart Roxburgh

Good luck Jill you've got thlis

£20.80

Janet Davies

Well done Jill. Keep it going it’s a fabulous cause xx

£20.80

Lindsay Rhodes

£20.80

Sheila Windle

Kindly donated by Sheila Windle

£20.80

Jill Windle

£20.80

Laura Riley

From Laura Riley

£20.80

Guy Windle

Good luck Jill xx

£20.80

Joan Fowler

Good Luck Jill. Love Mum

£20.80

Joyce And John

From Joyce and John

£20.80

Elaine & Kath

You did fantastic jill,well done xxx

£20

Anne Garner

Good luck

£16.64

Amy Pilkington

Keep going Jill, really proud of you!

£16.64

Helen Walton

£16.64

Geoffrey Gudgeon

Good luck 😉

£12.96

Maureen

£12.48

James Moore

£12.48

Anonymous

£12.48

Liam Smith (lgs)

Good luck x

£12.48

Neil Hodgkinson

Good luck Jill

£12.48

Colette

Fantastic Jill, so proud of you xx

£12.48

Imelda

Thinking of you Jill. Good Luck with your daily steps. x x x

£12.48

Susan & Tim Hunt

Good luck Jill, what a brilliant thing to do X

£12.48

Hope Windle

❤️❤️❤️

£12.48

Mark Leonard

Good luck with walk. Great charity to do it for. Lenny

£12.48

Roddy Grant

Love from Roddy at Sencat ❤️

£12.48

Mary Springett

Good luck Jill its a wonderful thing your doing xxx❤️

£12.48

Ormsby Family

🥰🥰🥰

£12.48

Lauren Crow

Good luck xx

£12.48

Scott Darnton

£12.48

Tom Hayman

£12.48

Jay Parker (lgs)

£12.48

Colleen & William Mcgrory

Well done Jill! From colleen and William

£12.48

Joseph Ashworrh Lgs

£12.48

Anonymous

£12.48

Mark Walton

Good luck we know you can do it.

£12.48

Travis Haywood (sencat)

Good luck Jill, all for a great cause.

£12.48

Amanda Thompson

Good luck

£12.48

Alison Hazlewood

Keep on walking, well done Jill xx

£12.48

Anonymous

£12.48

Michael Fountain

All the best I'm sure you'll smash it !

£11

Peter Hacking ( Sencat)

Good luck Jill

£10.40

Jane Rigby

Well done to “Christophers” Mum, you should be immensely proud

£10.40

Anonymous

£10.40

Jez Wayman

Well done you, 76 thousand steps get in.

£10.40

Julie Brandwood

What a great thing to do, good luck Jill x

£10.40

Susan & Peter Hayton

Keep those steps up. Best wishes Suan & Peter x

£10.40

Steve Gee

Well done sweetie.

£10.40

Andrea

Keep going Jill your doing great 💕

£10.40

Judith

Good luck Jill xx

£10.40

Nicola Simpson

Good luck Jill. Love Nicola xxx

£10.40

Geraldine Kirkham

From Geraldine Kirkham

£10.40

Carolyn & Martin Bland

Well done Jill. Walking for such an amazing cause. Autism Initiatives

£10.40

Angela Charnock

Good luck Jill

£10.40

Margaret Haslam

From Margaret Haslam

£10.40

Chris Sempie

You got this, well done xx

£10.40

Tina And John Marlow

From Tina and John Marlow

£10.40

Amanda & Stephen Embley

Well Done Jill ❤️❤️

£10.40

Val And Nigel

Good luck Jill, will be thinking of you. LoveVal and Nigel

£10.40

Anonymous

£10.40

Gillian Ashton

Love from Gillian

£10.40

Brendon Janukowicz

£10.40

Paul Redford

£10.40

John Tina Marlow

From John Tina Marlow

£10.40

Janet

Good luck Jill keep going x

£10

Ryan Kenyon & Mark Windle

Sure you will smash it! Lots of love Ryan & Mark xx

£10

Stuart Bilsborough

£10

Gemma Collison

£5.20

Steven Glass

Good luck Jill x

£5.20

Marc Mathers

Good luck x

£5.20

Louise

Keep walking x

£5.20

Valerie Blackburn

£5.20

Emily Kay

£5.20

Anonymous

£5.20

Alex Blenkharn

£5

Thomas Fildes

£5

Adam Robinson

All the best team windle