I love my children... but I hate their autism.

You read that right.
I hate their autism and I have no problem saying it.
I'm not grateful for it, for making my children who they are. I dream of what they would be like without it, without all these obstacles in their way.
I'm not one of those moms that " wouldn't change it for the world  " because I would. Every day I wish I could.

I hate what it takes from us. I hate that it makes Kirsty feel like she doesn't need friends or anyone but herself most of the time.
I hate that my son at nearly 5, can't feed himself or talk. Actually forget talking... even yes, no, mom and dad would do at this stage.

It's not what people think or see on tv.
For every 1 child with autism with a savant brainpower and intellect, there's probably 20 like Logan with a severe intellectual disability and the cognitive level of a 1 year old.
For every 1 child with autism that has an SNA in a mainstream classroom, there are probably 20 like Kirsty in units and special schools, that can't read or write at 7 years old.

Sometimes I feel like the autism I deal with isn't what is portrayed in the media.  I feel hard done by. Like we have it harder somehow, as self indulgent as that sounds... and I'm aware it does. But I hate it nonetheless.
The usual " they are very intelligent though " doesn't apply here. That stereotype didn't find it's way to Mallow.  Unfortunately they aren't.
The" but they are all happy in themselves" didn't either. Kirsty, yes... but not Logan.
He isn't a happy child.  Logan has no happy medium. He is either absolutely hyper or absolutely distraught.  There's no in between. Do you have any idea how exhausting that must be? To be so out of control with your mind and body that the smallest thing can cause absolute havoc.

Today I've witnessed the worst meltdown I've ever seen with him. We had screaming, empty retching which turned to vomiting, eyes rolling in his head, not being able to catch his breath... and all while wrapping his arms around my neck and pleading with me with red raw eyes to fix whatever is wrong.
There is no worse feeling than seeing your child in agony like that, in a turmoil that you'll never understand.  One that Calpol or Neurofen won't fix.
I gave up on religion a long time ago. What kind of a God would do this to a child or a parent?

I feel sad for him and Kirsty, and for us. It's too hard sometimes.
Like I said... I hate their autism.

Yesterday I was having a tough day. As I said before, when we go on holidays, autism comes with us too and all the stress that it brings!!
Sometimes watching other families do the things we can't do so easily can just hurt, so I was feeling pretty down and sad.

And then my favourite Snapchatter in the world rescued me!! Linzy has been my favourite autism mom and blogger for a long time and last night we finally got to meet in person!! ☺☺☺
I'm in Fuengirola and she's in Benalmadena, and we said let's do this!!
I got to meet her and her amazing hubby Liam and little Jamie and we had the best night together.
He is the most beautiful little boy and he was so good!! He coped so well, as did Logan and Kirsty. We all managed to actually drink and chat for hours!!👍

It was just what I needed.  I've always said my family are amazing and they are always so so supportive but sometimes you just need other autism parents to talk to. You need that different kind of normality that only other autism families know. Logan was just weak for Liam... he spent the night sniffing and cuddling him!! 😂

I woke up today feeling so happy and grateful.
Thank you to ye guys for coming here, we absolutely love ye. We'll be friends for life. 💙💙💙

Linzy Foster

To my Logan,

In 9 days, you start a new journey to a most wonderful school in Charleville.
You may not know this but you were so lucky to have been offered a place. Oh last year was so hard for you. The saddest time for all of us. We didn't know what else to do but beg and plead... And someone listened thank God. 
Now you have the opportunity of a lifetime. Try as they did, the previous schools just couldn't give you what you needed. They did everything they could and loved you like their own but the teachers and SNA's were as heartbroken as I was, watching you cry and scream each day.
This time it's going to be different.  You can do things as you need to and you are going to have so much fun. No more text books deciding what you should and shouldn't do. This is a very special school for very special boys and girls, and they don't come more special than you, my love.
You can swim every week, and visit with horses and you won't believe the size of the playground!! There is trampolines everywhere and some really lovely people waiting to take your hand and show you the way.

This patch is the start of your new school life.
We are so excited for you, this is going to be your year. I can feel it... and you know Momma's never wrong.😉

You got this my Logie Bear. We're all here behind you.  Here's to your best year ever. 

Love Momma and Dadda. 💙💙💙

Bedtime.

Oh bedtime.🙄
It never fails to get my blood pressure soaring.  For the last 6 years myself and Brian, and whoever happens to babysit for us, have laid down with Kirsty to get her to sleep.
Bedtime goes like this... teddy in hand, she toddles off up, often yawning and eyes closing and we think " yep she's tired, she'll be gone in no time". Great. 🤞

Then her arse hits that bed, her head hits that pillow and she does the exact opposite thing kids are meant to do in bed, sleep.
And 3 beds later, I'm confident to say it is actually Kirsty, and not the bed nor the pillow that is the problem.
You see she has this amazing fucking ability to avoid sleep.
10pm or 3am, she's like" no I'm good thanks " and the sandman heads off to another house where the kids welcome him with open arms. 🙄
And she jumps on the bed or flips her whole body like that child in the Exorcist and squeals laughing.

So we lie there with her. We used to lie there holding the iPad until she nodded off, she got immune to that.  Then we tried giving it to her to hold until her eyes couldn't stay open anymore, she got immune to that.  Give her 3 hours and 4% battery and she's still watching some Portuguese version of the hot dog dance on YouTube. She's 6 years old . 6!! 🙈
We say " sssshh" and she says it back. We say " go to sleep " and she says " okayyyy " while laughing. 😒

Lately we've been lying there with some songs on Spotify so there's no light to stimulate her, just pleasant, soothing nursery rhymes in the dark. That worked for 2 whole nights. Last night she fucked my phone on the floor and after 30 minutes of stimming and squealing she fell asleep.
That was nearly 11pm...way past my bedtime. 😂

Well tonight I just thought FUCK. THIS. SHIT.
I'm not doing it anymore. 🖕
I'm putting my foot down and taking back our nights from that little blond haired, blue eyed bowsy.
I sent her upto bed with the iPad and closed the goddamn door. 

That was 40 minutes ago. She has been jumping on that bed so loud and hard since that I'm pretty sure I'll be seeing her through the ceiling in about 3 minutes. I bet if I went up there it'd be like the scene from Home Alone where Kevin realises he has the house to himself. She thinks we've finally lost it and she's won. She's flicking on the lights and playing with the stuff in her room and I really couldn't give a continental shite.
I'll probably find her asleep naked with Senorita Minnie still playing away on her iPad but after what can only be described as a day from burning hell with Logan, I couldn't care less.

You gotta pick your battles in this parenting malarky. I'm choosing sanity tonight.

The trials of a non verbal house...

Today Kirsty wasn't well. Unfortunately I didn't know this until I tried to give her a dinner and she threw up 2 spoons in.
We get no warning because she can't tell us. Unless it's a high temperature I've no clue. Because she's so easy going most of the time I thought is was a one off but she vomited again in the bath later this evening. One minute she's splashing around, the next she's sick.
No warning, no " Momma my tummy hurts ", just sick straight out of the blue.  It worries me no end to think she's in pain and can't tell us.
The day we flew to Spain in July she came downstairs with what could only we described as a huge burn on the back of her arm. The burn has since healed and scarred and I still have no idea what happened to her. No idea at all... So I've no way of making sure it doesn't happen again.  The reality is I can't watch her 24/7.

Yesterday we heard a scream and then heard Logan crying. He came in bawling, and once again we had no idea why. It's Calpol " just incase " and that's it.
Add that to an extremely high pain threshold and you can be faced with a serious injury that no one knows about. One time I saw Kirsty fall flat on her face and I was 100% sure she had broken her nose.  She hit the ground helplessly and so hard that I was afraid to look, but she got up and literally dusted herself off and walked out whimpering.
She just got on with it. Her resilience amazes me but it makes me sad that she doesn't come over, arms out, looking for comfort. 💔

An odd and very rare time Kirsty might point or gesture to what hurts and that itself is a gift from God. Last year on a flight she put my hands over her ears and even though I couldn't stop her ears from popping, just knowing why she was crying made me feel a little less of a failure. At that moment at least I wasn't worrying what the hell it could be, when it literally could be anything!!!

When your kids cry, as a mom it's your job to fix it. It's in your core, at a most fundamental level to find out what hurts and make it better.
Autism steals that ability from us as parents. We are winging it, the same way we did when they we're newborns only now there's no one to say " that baby is hungry " or " they grow out of that ".
The reality is they aren't babies anymore but somehow they still are.
Maybe they always will be. And we have to send them out into the world totally unarmed.
Unless they find a way to communicate effectively, be it with words or otherwise, we'll always be guessing.

And that is a scary prospect.
😢

Some people can make your life so much easier by just offering the smallest of a kindness.
Let me tell you all about one such act.

So today I collected Kirsty from school and as a little treat I decided to take her to the drive through for chips. She doesn't eat chocolate or sweets so fries are her little indulgence.
I got all the way to the payment window before the blood drained from my face as I realised I had no wallet.
No money.
No card. 😳😳😳
Not even coins in the ashtray to scramble together.
I had completely forgotten I walked out with just my phone and no bag.
I apologised to the lady and drove away.😢

Now if this was any other child you could explain and say you'd come back with money.  But not where autism is concerned.  Especially non verbal autism.
The second I drove away Kirsty started crying and saying " ma chip, ma chip ". 💔💔💔
Imagine the panic.
I was gutted. 😢

I live about 8 minutes from there but that would be like an eternity to her so I drove to the nearest bank and parked up in the hope of getting cash and bringing her into the actual McDonalds to sit down. 🤞
On our way in, we met Emily from the Evolve therapy clinic in Mallow. I couldn't stay chatting long as Kirsty was so distressed so I quickly explained the situation.  Emily kindly offered to give me the money but I said there was no need and carried onto the bank.

Now not only did Kirsty not have her chips but we were going somewhere else she wasn't ready for so that didn't go well.
And guess what... Ya you can see where this is going. The fecking cash desk was closed since 12.30pm.
😳😳😳

Now I was thinking,
" I. Am. Screwed. I'm going to have to bring her home and come back and there will be WAR!! "😟

She was already clawing at her jumper at this stage, which she does to warn you that shit is about to hit the proverbial fan. And still saying " ma chip, ma chip " over and over and with tears accompanying her little voice.
I walked back to the car and Emily was just getting out of hers.  She looked over to see if I was sorted and I said " after all that the cash is closed " wringing my hands.
So she walked over and put €5 into my hand.  I said no over and over but she insisted.
Emily's the clinical director of Evolve where they offer speech and language, and OT services . She knows autism inside out. She worked with Logan at his toughest stage. She knew what I would be facing if I derailed from the chip plan once more.
So she insisted.  And deep down I knew I had to take it. I thanked her/ apologised to her about 5 times and promised her I'd repay her ASAP.🙈

Then I drove to the drive through and got my extremely distressed little girl some long awaited chips,with tears in my eyes. 💔

Look at her face. Even after she got them, you can still see the worry on her face. Even getting out of the car she was still so upset.
I used to think that only parents of ASD got ASD, but my god some professionals do, and Emily is one of them.
The last pic I took after getting home, Kirsty... calm and eating. This would be a very difference picture if I hadn't been so kindly helped.

Like I said, a small gesture but a HUGE impact.
I can't thank her enough.
Everyone please show her some love. She's an amazing lady.
I'll put her link in the comments.  I've always vouched for her professionally but personally she's even better. 💙

We love you Emily. You're fiver is on it's way, along with my eternal gratitude. 😂

💙💙💙

I love this.
We may be Kirsty and Logan's heroes to the world, but they are definitely ours much more.
They live in a world they don't understand , and in a world full of people that don't understand them.
Think of how things are experienced by them.
I can't imagine how confusing it must be.

This poem is my words, but from their perspective. ❤

People change their minds at the drop of a hat,
They eat strange things and talk way too fast.
In this busy world where people are loud,
They get too close to me and there's always a crowd.

My clothes feel too tight, those lights are too bright,
And flapping my hands keeps me awake all night.
My speech didn't come as soon as it should ,
And I hear them say sadly " if only she could ".

Each day things are hard, sometimes it's too much,
Sometimes I like cuddles,but other days " Don't touch ".
That thing that you're eating smells awful to me,
We look at something together but you don't see what I see.

This world makes no sense, so I try to make my own,
It makes people sad to see me alone,
But I try every day, let me learn slow and steady,
I'm happy in my world, I'll come out when I'm ready.

💙💙💙💙

I'm asked a lot of questions... and a very popular one is " will you have more kids? ".
We always wanted 3, that was our number. I thought it would be 3 girls as there's a serious shortage of boys in the Healy clan!😂  Logan was a huge shock!!

But unfortunately, just like this quote below, my answer is no.
It's the right answer, the sensible choice, but still it's the choice my head had to make and not my heart.
It was the choice myself and Brian made, after coming to the very sad conclusion that another child would just be too much of a risk.

I was pregnant on Logan when Kirsty was diagnosed so we didn't have a choice, he was on his way.💙
But as soon as Logan was diagnosed it became a very real possibility that more children would bring autism with them too.
How could we possibly cope?
And if a third child didn't have autism, would it be fair to them? Would all our time be taken up caring for Kirsty and Logan, and would it automatically fall to them to do so once we no longer could ? We both love babies, and wondered every day what it would be like.
We agonized over these questions but we both knew deep down the answer was there already. So at just 32 years old, a time when many couples are only starting their family plans,  we closed the book on having more kids.

It was the right choice.
And the most responsible one for us.
But not the easiest, and definitely the saddest.😢 Sometimes the head and heart don't reconcile and that's ok. I have days where I feel sad when I see baby bumps and days when I wonder what he/she would have been like... but it wasn't meant to be.
2 is our new number and that's more than enough.😊
👨‍👦👩‍👧

Another year down. Looking back 2017 was both good and bad for us. I've always been honest here so I'll start with the bad.😢

My sister fell pregnant and sadly miscarried, which resulted in some serious medical treatment afterwards. She powered through and was absolutely amazing. I couldn't love her or David more.

My dad was diagnosed with Motor neurons disease in Sept which completely crippled us all. We think we have problems in every day life but really it's the things that come out of nowhere that just devastate you. My parents are incredible. I owe them everything.
My dad is 1 of the 2 most important men in my life. It just broke my heart into millions of pieces. We are trying our best as a family to cope, that's all we can do.

I have to say the year wasn't all bad. My sister also got engaged and is getting married in 3 months!! Our daughter Kirsty finally became toilet trained, honestly one of our greatest achievements to date.
After 4 years of waiting, I heard the word "Momma" from my beautiful boy Logan and thankfully it wasn't a once off.  He says it often now, along with ""dadda" and most recently " nana".
And I'm hoping those words keep coming, like they are with Kirsty. His use of PECS has flourished and he also transitioned to a brand new school which anyone that understands autism will know is incredibly hard to do.

Now it's almost that time again. A new year approaching and thoughts of new resolutions and goals. It's funny, for as long as I can remember I used to pray to be thinner as my resolution. I'd swear every January, "this  would be the year I'd do it". Well I did it. I lost the weight this year and yes it makes you happy, but it won't give you everything you need. But it's one less thing to keep me awake at night and for that alone, it was worth it.

For 2018 all I want is peace.
Peace of mind.
Peace at home.
To know that whatever happens, my husband, my children and my family are ok.
At this moment in time that seems impossible. I know nothing will ever be the same for us.
We are facing a tough year ahead and it worries me sick. All we can do is make every day count and be there for each other.

I'd like to thank everyone for reading my blog in 2017. This is my outlet and you've all dried more tears than you'll ever know.

My best wishes for 2018.

Elaine 💙

This is a post solely dedicated to the people that have made helping my children their career... the wonderful teachers and their amazing SNA's.

I have always been vocal about Kirsty and Logan's school and how great they are but that was easy to say because Kirsty never gave them any trouble. She toddles into school every day with a smile and thoroughly enjoys it. Back in her first year at early intervention we had a few hairy days at the start but overall school has always been a happy experience for her.

This year that same early intervention class met Logan. Logan, the sweetest, most affectionate little boy I know, entered their classroom and I was a wreck.  Because I know.
I know how long it takes him to settle into a new place.
I know how hard it is to bring him back from a meltdown, how impossible it is to stop the screaming once he gets to that place.
I know the sheer volume of his cry, the pierce of his scream and how it can set other kids off, whose crying in turn then makes him worse.
I know the exasperation he feels when he can't communicate what he needs and the frustration that comes with it.
That frustration turns to biting, pinching, hair pulling and kicking.

I can live with all that because I'm his mom. It's my reason for being here. It's my job. Not the one I necessarily wanted or planned for, but I have it nonetheless.

But what about the people who do it voluntarily? Who get up every day and face all of the above for a child that isn't theirs?  Never knowing what the day will bring, if they'll be attacked or abused? How do they do it? I have always wondered, why would anybody voluntarily pick this job?

And I think I know why.
Because today might be the day.

The day they'll break through and finally watch a child use the toilet on their own,
Today, after months of trying, they might get a 6 year old to put down their baby bottle and pick up a cup and sip.
Today is the day they'll ring a parent after the school quietens down and say " he picked up the PECS card on his own ".

Of course they have to deliver the bad news too. When Logan's teacher calls me to say "he bit one of us today" I feel more sorry for her than me.  No one wants to make that call. Tuesday's one got to me and I was in tears. I asked her about their policy and what happens if it continues. I was bracing myself to hear he might have to leave and find somewhere more suitable.
And she simply said " That wouldn't happen, we will find what's right for him. That's our job "

That isn't a job. It's a calling. It's some sort of gift that appears in people and just makes them incredible.
If you're an SNA, a teacher involved in special education, a bus or taxi escort, a respite worker or anyway involved in the life of kids like mine, you are helping in ways you'll never understand. Thank you for choosing this job.

I salute these people today. I thank them.  They don't problem solve. They understand and they value.
We need so many more of them. 💙💙💙

The tooth fairy... autism style !!

Kirsty lost 3 teeth last year. She must have swallowed them because I never saw them and she never complained about them. But yesterday she pulled out a loose tooth and handed it to me!! Huge day for us.

Logan,
Happy birthday my beautiful boy. You've taught me more about love than I could ever have imagined. I'm so proud of you. I hope this will be your best year yet.
💙
Love Momma.

👇

Today you are four, those years went so fast.
I'd give anything to go back to days that have past.
I thought we had all the time in the world,
But you got big so quick, it went by in a whirl.

I think of the endless nights when you kept us awake,
Nights when I wished I could fix where you ached.
Days when I thought teething was my biggest worry,
I wished you along, to grow up in a hurry.

Now you're a big boy but you're still my baby,
You haven't spoke to us yet... next year maybe? 🤞
We'll wait here forever for it, your dad and me.
We are still the proudest parents we could ever be.

Your smile makes our whole world go around,
Your chuckily laugh is our favourite sound.
We'll love you unconditionally, until our days are done.
You're everything we could ever want in a son.

💙💙💙💙

Reducing language.
Nana's have the best parenting hacks!!! Here's my mom Anna O Connell teaching  Logan to throw and tidy at the same time.  😂

I recently learned at a Middletown Center parenting course, that many kids with autism can take between 8 to 15 seconds to process anything we say. Even 8 seconds might seem like nothing but considering you or I can process things in less than 1 second it's quite a long time.
Do any of you ever find your child repeats back what you say immediately? Apparently this is their way of giving themselves time to process and understand what you've said. Clever little things!!!

The tip is to reduce your language dramatically.  Keep it as short and as clear as possible for their brains to take it in.
And wait...give them time to answer.  I know I'm guilty of repeating myself 10 times in a row when I want them to do something so I'm working on that!!

Just a simple  one-word  command works better here so my mom is just saying "IN" rather than " put your Lego in the box "... and he's understanding and doing it. Plenty praise helps every task also. 😊

I'm super proud of him. ❤
This simple throwing exercise is building an important little skill. It's good for his arms from an OT standpoint, he's hearing language and it's great for his concentration aswell.
Less clean up for us too. 😂😂😂

Totally off my normal topic of Autism...

This post is about me as a person.  Not a mom, or a carer but just a woman.  I've struggled with my weight my whole life.  It has just always been an issue. Partly because I fecking love food and partly because food loves me!! If I'm sad or stressed it's my comfort, and when I'm happy I celebrate with food. And there's no point in saying " I only have to look at food to pile it on" because it wasn't looking at the food I was doing, it was eating it.🙈
A while ago I joined slimming world.  Over the years, after a back operation, a knee operation and 2 heartbreaking diagnoses for my kids I had let myself go.
The size 16's were getting tight and I wasn't happy. It can be easy as a mom to stop looking after yourself and focus on your kids. But I wanted some bit of myself back so I said I'd try it.
Now I'm not here to preach and say everything has changed and I'm now a model eater. It's tough. I still love food... a lot!! But it definitely helped the way I see food.  And one thing I did get from it was confidence. Before I joined I didn't wear flattering clothes.  I wouldn't have dreamt of leaving the house in a tight jeans and a body suit. I just didn't have the nerve. I looked at myself last night and thought, ok I'm not perfect, but for the first time in years I'm kind of happy with myself.

The jeans were a size 12 and I am super proud.  The belly is still there ( thanks Kirsty and Logan 😂 )and if I wasn't so lazy I could go to a gym and work on my arms but that's ok too. 😂  I'm in no rush to be skinny.  For now I'm just gonna give myself a pat on the back and say  " you've come this far... keep going ".

I know I'm a mom and that's my job... but I'm a girl too. It's good to remember that once in a while.
❤❤❤

Some days.  💙

Some days I can't fathom how I'll do this for life.

Some days I'm so tired I can't even look at a pecs book or a visual schedule without feeling sick so I just give them what they want.

Some days I hide in the bathroom and cover my ears just so I don't hear incessant stimming or screaming for a second.

Some days I get pinched, bitten, and my hair is torn out... all because a small boy can't tell me what's wrong.

Some days a little girl cries her eyes out to me and I have no idea why.

Some days I want to scream into a pillow because life is so fucking unfair.

Some days I can't believe I may never hear Logan say "momma"  or Kirsty say she loves me.

Some days the injustice of it all makes me feel like I can't breathe.

Some days I hate the life we have, and then I hate the guilt that comes with feeling like that.

Some days autism wins... and I lose. I lose my temper. I lose my head.  I lose my fight.

Some days are just too damn hard.
Today was one of them.

Xxx

One very tired Momma.

So as you all know our big girl is now fully trained.  Between here and snapchat loads of you have asked how we did it and if I've any tips. Now I'm no expert, I've only ever done one child and it took over 2 years but we got there so if I can help anyone else of course I'm happy too.  I wrote down a few things that hopefully will help ye too.👇👇👇

Daytime.

✔ Get all the help you can.

I didn't have the nerve to try her at home myself. I honestly didn't even know where to start but Kirsty's school was 100% on board and so that was 4.5 hours I didn't have to do it each day. They made it part of her schedule and it became a habit for her to go. Ask your childs teacher/ creche assistants to start as soon as you do. I had some schedules you can print off Google. We had them in each toilet and toilet icons on her PECS book and every bathroom door. Kirsty is a visual learner so that helped her too.

✔ Skip the potty if possible.

With kids that have additional needs, or are still non verbal it can be hard to move from the potty to the actual toilet. We never used a potty so we never had to worry about Kirsty being confused.  Some kids can just associate toileting with a potty alone and you'll be facing a brand new battle trying to introduce the real toilet.

✔ Rewards and Motivators are a huge part in this process.

Even getting Kirsty into the loo was a task for us. We set our timers to 20 minute loops and we went in every time they went off. She couldn't understand why she was in there and she'd cry constantly. I brought in everything I could to entice her in from her dummy and teddy to the Ipad and chocolate buttons. Hygiene wise it wasn't the best I know but needs must, and it helped to keep her arse in there. 😂
Anytime we got lucky and she did go the rewards were given instantly.

Oh and Remember.👇

⚠ Motivators have to be just that, motivating. If they can do without it they will. I used Kirsty's dummy as ours and the loo was the only place she could get it.
(What a mean Momma. 😂)

⚠ Rewards have to be quick and short. We used buttons but only one at a time.

✔ Time, time and more time.

Training a child that can't speak, to listen to their body takes time. It needs to become part of their routine until they understand why and learn from their body about needing to go. Although it's easier to spot that they are about to poop, it's much harder for pee. There were usually no signs and we wouldn't even know she needed to go until we saw the puddles or wet clothes. So we had to just make it routine.
Like I said above, we brought her in every 20 minutes at the start. She screamed and cried and often sat there and as soon as we took her out, peed on the floor in front of us, but still we stuck it out. I started from 1pm after school and aimed to get to 6pm before putting the pull up on for the night.  Some days I got there, other days I got to 3pm and gave in, but we did it for sometime each day. Believe me I had plenty tears myself. It was exhausting.
Anytime she went I showered her with praise. If she wet or soiled the floor we cleaned it without any fuss. I don't give the accidents any attention, even negative attention is attention to kids and can have the opposite effect of what you are trying to achieve.
Eventually we were getting to 8pm before the pull up was going on. It just takes time and lots of it. Time, patience and plenty spare undies.😂


Night time.
(this is from a previous post so apologies for the repetition if you've already read it. 😊)

✔ Wait until they are ready.

We learned this the hard way.  Last year we tried Kirsty at night for 2 weeks.  She wet the bed 2/3 times a night, every single night.  She was still having accidents during the day so I don't know what we were thinking but it definitely wasn't the right time.
This time I did my research and I read that if a child goes 2 months without an accident during the day it's a good time to try at night. I left Kirsty's pull up on all summer, even when she was going in by herself.  I waited until I knew she had the understanding. And even though she was 100% trained at daytime that pull up was still full every morning and we didn't know why. Was it a comfort thing or a habit? I thought night time wasn't on the cards for a long time yet.

Then she woke early one morning, around 3am and when Brian checked it was dry. She didn't go until around 7 that morning so we knew she was physically capable of holding it at night.  The next morning was the same thing, only it was 6am when she woke. We realised she was waking dry and then going in the pullup so we knew it was time for it to go.

✔ It's not recommended to wake your child and bring them to the toilet.  Apparently it slows down the process of them learning to hold it subconsciously during sleep. We never did it as Kirsty barely sleeps as it is so waking her is never an option but it's each to their own so do what works for your house.

I hope this helps guys. Good luck to anyone starting.  It was a long hard process but so worth it.


Xxx
Elaine

Monday we took the plunge!!! 🙈
We sent Miss Kirsty to bed with no pull up on. I didn't know if she was ready but she has been so good during the daytime all summer so we said we'd try it. She had been going into the toilet on her own and totally stopped having accidents so we took a leap of faith.  And with Brian being home with his back for a few weeks at least we could share the sleepless nights.

I had everything ready. Wet pads under the sheet, spare sheets and duvets at the ready. She peed before bed and off she went!!
That night I didn't sleep a wink!! Every time I heard a peep I was listening outside her door.  I was fully expecting to be changing sheets  ( and her ) at 3am!!
Fast forward to 6am and she was dry!!! I couldn't believe it !!!
Now it's Friday morning and she has been dry every morning since!! I was afraid to  post about it incase we jinxed it but 4 nights in a row later and I actually think she's done!! She just clicked and now she has it. This. Is. Monumental.

I'm gonna just say it... well I'll scream it:

OUR DAUGHTER IS POTTY TRAINED !!!  😄😄😄😄😄😄😄😄

After 2 and a half years... we are just over the moon. I never thought we'd be here. To train a child that cannot speak has been one of the hardest and stressful things I've ever had to do. I've seen friends and family start and finish within 2 weeks and life never felt so unfair.  But we got there!!! I couldn't be more proud of her.
I'm in no way an expert but if anyone  is starting night training this piece of advice might help you.

Wait until they are ready. We learned this the hard way.  Last year we tried Kirsty at night for 2 weeks.  She wet the bed 2/3 times a night, every single night.  She was still having accidents during the day so I don't know what we were thinking but it definitely wasn't the right time.
This time I did my research and I read that if a child goes 2 months without an accident during the day it's a good time to try at night. I left Kirsty's pull up on all summer, even when she was going in by herself.  I waited until I knew she had the understanding. And even though she was 100% trained at daytime that pull up was still full every morning and we didn't know why. Was it a comfort thing or a habit? I thought night time wasn't on the cards for a long time yet.

Then last week she woke early one morning, around 3am and when Brian checked it was dry. She didn't go until around 7 that morning so we knew she was physically capable of holding it at night.  The next morning was the same thing, only it was 6am she woke. We realised she was waking dry and then going in the pullup so we knew it had to go.
We took a chance and it really paid off. She just amazes me!!!
Once more for the road...

OUR DAUGHTER IS POTTY TRAINED!!! 😄😄😄

Row row row your boat!!! 🚣🚣🚣

It's such a simple song and game but so great for encouraging eye contact and eventually speech.
Especially for early intervention before language comes, this type of floor play and interactive games are perfect.

Kirsty has always loved it. At the start if she even made a sound or gave a glance of eye contact we'd go again. It's important to wait and let them realise they need to so something if you want to continue.  Even the smallest sign is ok as you can build on it.
Now Kirsty will say "again " or "go" and sometimes even "Momma, again ". Any sign of a word and we are weak!! 😁😁 Her teacher was playing it in school with her yesterday and she couldn't believe the eye contact and interaction she was getting.
Logan loves it too. The faster the better for him. Brian thinks he'll have whiplash!! 😂😂

Try it with your little ones.  Even do one or two lines of the song to build it up and then go longer and longer each time. If they'll sit on your lap that's great but some kids cannot tolerate that closeness so a mat on the floor works just fine too.

Happy rowing!!!

❤ A letter for any new special needs moms. ( And maybe a reminder for any existing ones.)

Hey you.
Yes you. Sitting at the kitchen table with your head in your hands. Crying tears that seem endless and sighing every breath. You didnt sleep last night did you? You probably haven't sleep properly since you heard it. That word that brought the whole world to a standstill. That word that took away all the plans you made and confirmed the worst fears you had...
Autism.

Now girl... I know what you're thinking.
How can such a small word be such a huge word?
How can that child you've always known seem so different somehow?
Why us? Why them?
I know we did nothing wrong but did we? Did we miss something?
How are we going to cope... and what the hell do we do now?

The reason I know you're thinking the above is because I did. I sat at the table and sobbed. I sat on my mom's couch the next day and cried even more.  A week later... and still the tears were flowing with no sign of stopping.  It seemed like every time I even thought of the word "autism" my brain sent a signal to my eyes to fill up again. I honestly thought I'd never feel happy again. I mean how could I? The most important thing in my life and this is what she had been dealt.
And that feeling of sorrow was only ever equalled once more. When I heard "Autism" again. Only that time I felt like the pain would actually crush me. I thought " there's no way we'll make it through this a second time".

People ask me every day how do I cope? They ask me how do we do it and say they couldn't. I always answer the same, " we have no other choice, you just do it". But then recently someone asked me "How did you get through it?"
And that one, I had to think about.

The truth is we didn't get through it. Yet. We are still wading through, we will always be. Because it's for life. They'll always be our kids and they'll always have Autism so we will always only be getting through it.
If I stop and think for even a second, I'm right back at my kitchen table with you lady.  I can feel every bit of how that felt. How scared and alone me and Brian felt.  How angry and hurt and completely devastated we were. Both times. It's all there planted in my brain and I'm sure it'll never leave.

So I say this to you Momma. You, sitting at your table crying or sitting in your car after you've arrived home but you just can't face going in.
Breathe. And breathe again. Take this time to just breathe.  Nothing has to be done tonight. You think you don't have time but you do. Just let it sink in.
And then listen to me...
You CAN do this. Your child needs you. This is what you are here for. Be their voice, be their champion. Fight for everything they need.

Believe me when I say you won't get it all right. You'll cry and scream and wish things were different but you'll do it all the same.
You got this. Even on the days you think you don't, you do.

Because that's what Momma's do. ❤❤❤

How did you know.

The question I'm asked most of all.
Well here goes...

1. Kirsty.

The short answer is I didn't. She was my first and everything she did (or didn't do) was normal to us. We tried not to compare her to other kids and just plodded on.
Looking back now the long answer is I knew. I knew something. Deep down, somewhere, a nagging voice, and a ache in my gut told me there was something wrong. I tried to ignore it and convinced myself that she would do things at her own pace. I got highly indignant with my mom or anyone else who questioned her and pushed that nagging voice away until I thought it was gone.

A meeting with the public health nurse when Kirsty was 16 months set me at ease. She told me and a very worried Nana that everything was fine and we didn't need to worry. I remember being so angry at my mom after we left for even mentioning the word Autism. Like I said, I tried to push the feeling away.
6 months later and we were back there and this time, we both left in tears. It was clear as day. I still wonder now how I ever denied it to myself. The rocking, the flapping, the obsession with Mickey mouse, the zero eye contact, zero speech, not even babbling... how could we not have seen it?

 I honestly didn't see it. Until I did. Then it was all I could see.  I remember Brian called me and said " I've been googling it and it's like they're describing her ". It was like our eyes were suddenly opened. You just don't want to believe it.
Looking back, we knew.  We just didn't want to know we knew.  😢

2. Logan.

Believe it or not, having 1 child with Autism doesn't make you  an expert.  After Kirsty was diagnosed I watched Logan like a hawk. I swore I'd see it earlier this time if it happened again. But he was so different.
Eye contact, Check. Flapping and rocking, Nope.
I thought we were ok.

The only thing I worried about was his screaming. His constant, unrelenting screaming. He never stopped and never slept either. Brian said to me at 6 months, " he has it too". I thought he was paranoid.  Logan even walked earlier than Kirsty at 12 months.
But the second he got on his feet it was like I was hit by a truck. He started going around in circles one day and my stomach sank. It was like a switch.  I saw the possibilities of autism in him for the first time and it wasn't long after that he was diagnosed.

I can honestly say I was blown away. It turned out Autism presents in many forms and while I was looking for Kirsty's traits he had developed his own.  All classic traits too, just not what I was looking out for. The screaming was all sensory, the no sleep is typical autism. I didn't have that nagging voice in my head or that feeling in the pit of my stomach. I genuinely didn't know.
 With Logan it was like hearing the word for the first time all over again.

And that's it in a nutshell.  I could type for hours about how I felt then, and now.  What I'm hoping I got across is that as parents we are not experts. We aim to do our best but sometimes our brains and hearts protect us from the truth.  Don't feel guilty for not seeing what other people may have seen as obvious.  It's a different story when it's your baby and your whole world.
What matters is what you do when you do know. 💙