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.😊
👨‍👦👩‍👧