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. 💙

Acceptance.

I saw a quote today and it got me thinking. The caption says the first step comes " once you accept ". But what if you can't accept it? I've been there. 

 For the longest time I never thought I would accept autism. This wasn't the life I wanted. This wasn't the way of parenting I wanted to have to learn. And this wasn't the life I wanted for my kids.  An uncertain future filled with huge worries and the fear of cruel people and a society they wouldn't understand. It seemed so unfair and still does. I've always been honest about the fact that I absolutely hate Autism. It stole a life from us that we will never get back.

But I've realised lately that we have accepted it. Maybe not the way you would expect but in our own way. I thought acceptance meant no more tears or feeling let down by where life took us. Like I'd wake one morning and say " ok... it is what it is, no more crying, let's do this. "
Well that's not the case.

We still cry. We still wish things were easier. We still wonder why us and why our children.  But what we don't do anymore is feel guilty about all of the above. When I say I found acceptance, that's what I mean. I accept that I'll always feel sad and a little hard done by.  I accept that I'll never be a mom who says they wouldn't change them for the world because I would.  I'd take away autism in a heartbeat and if you have to ask why then you'll never understand.  But I can't take it away and I've accepted that.

I accept that autism isn't leaving and so my feelings about it are here to stay too.  I've found a way to be happy in life without being happy about autism. I didn't think those 2 things could co-exist but they do.
And being able to say that out loud gives me so much peace of mind.  Accepting that they are different maybe a step but it doesn't have to be the first step.
Accepting that it was ok to always feel sad that they are different was my first step.
And it might be the only step I ever needed to take.

saw this picture today and it got me thinking. The caption says the first step comes " once you accept ". But what if you can't accept it? I've been there.

 For the longest time I never thought I would accept autism. This wasn't the life I wanted. This wasn't the way of parenting I wanted to have to learn. And this wasn't the life I wanted for my kids.  An uncertain future filled with huge worries and the fear of cruel people and a society they wouldn't understand. It seemed so unfair and still does. I've always been honest about the fact that I absolutely hate Autism. It stole a life from us that we will never get back.

But I've realised lately that we have accepted it. Maybe not the way you would expect but in our own way. I thought acceptance meant no more tears or feeling let down by where life took us. Like I'd wake one morning and say " ok... it is what it is, no more crying, let's do this. "
Well that's not the case.

We still cry. We still wish things were easier. We still wonder why us and why our children.  But what we don't do anymore is feel guilty about all of the above. When I say I found acceptance, that's what I mean. I accept that I'll always feel sad and a little hard done by.  I accept that I'll never be a mom who says they wouldn't change them for the world because I would.  I'd take away autism in a heartbeat and if you have to ask why then you'll never understand.  But I can't take it away and I've accepted that.

I accept that autism isn't leaving and so my feelings about it are here to stay too.  I've found a way to be happy in life without being happy about autism. I didn't think those 2 things could co-exist but they do.
And being able to say that out loud gives me so much peace of mind.  Accepting that they are different maybe a step but it doesn't have to be the first step.
Accepting that it was ok to always feel sad that they are different was my first step.
And it might be the only step I ever needed to take.


❤❤❤

An update on our Magnesium oil trial.

Guys I unfortunately don't have much to say about the magnesium oil. It certainly wasn't the solution I was looking for or a miracle cure to help Kirsty sleep. I did find that it relaxed her a little bit before bed but her problem has never been falling asleep but rather staying asleep. It might help for anyone who struggles to doze off at night but as for getting her through the night it didn't work.  Save your money on this one guys.

We've also started using Cell Nutrition Isotonics and while I feel Kirsty is a little sharper and more sociable than before I think it's too early to tell if they are the cause. We've only been using them 2 weeks and I'd like to give it more time before reviewing it. I will say that Logan tried a new food since we started him on them but again that could be coincidental. Time will tell.

Now for the hard part. 👇

 I mentioned before that we had used Phenergan  ( an antihistamine ) on occasion when things were at dire straits to get Kirsty and us, a decent night sleep.  This was doctor approved and it did work for a period of time until she became immune to it.
After almost 3 weeks of no sleep I recently went back to my doctor in tears and they advised us to try Piriton. We have been trying this every night ( except for the sleepover in Nana's because she always sleeps there the pup!! ) and it is definitely working. Piriton is also an antihistamine.

Please note this is a seriously sensitive issue for us. I've agonized over whether to say this out but I pride myself on being honest and that won't change.
I'm telling you all the honest truth because I don't want to lie and tell people who kindly follow us that an oil or a drink will get you a night's sleep. You've all seen me on snapchat at 4am night after night in tears and something had to give.

Many autism mommies I've spoken to are in the same boat, using the same remedies but are so afraid to say it incase they are judged... and I was too.  I thought " people might say I'm drugging her" and "what if they think I'm just taking the easy way out to get some sleep?"
Maybe they still will but all I can say is come live with us and then you'd see. Stay awake night after night, all night, and get upto my 3 year old boy just as his sister dozes off at 5am. If she does go back to sleep...because sometimes she doesn't.
Look at a 5 year old girl with dark circles under her pretty blue eyes and a sickly pale colour to her skin.

It killed me.
To look at her and know she feels sick because I've been up all night and I constantly felt nauseous from tiredness. I couldn't do it anymore. To us or to her. Something had to give.
This isn't long term.  It's not supposed to be and it won't be. We will try our best to get her through the night without help whenever and however we can.
But for now we need that extra help and if it's ok with the doctor, I can live with that.

Desperate times call for desperate measures.

So we are currently on night 7 with no sleep. Kirsty has always been a bad sleeper but since we came home from holidays she hasn't slept for more than 4 hours a night. Yesterday she went from 1.15am to nearly 11pm last night before she went off.
I am fit to be tied and I don't know how Brian is driving to work. We have tried everything from Phenergan to Melatonin, Lullaby milk to lavender and she just cannot sleep through the night.  It used to be an hour or two that she'd just lie there and chat to herself but now it's full on hyper mode. She jumps on the bed, turns on her light, pulls back the curtains and squeals at the top of her lungs.  I swear at that hour you'd feel like murdering her.  There is nothing worse than no sleep. I almost reversed into someone in Blackpool shopping centre I'm so distracted. It's relentless and it's every night now. Even when we do get her back to sleep Logan wakes between 5am and 6am. Torture!! And she's exhausted too. She's cranky and fed up and it's a long day for us all.

So I'm trying a magnesium oil from the Health shop. Apparently you rub a few drops on her temples and the back of her neck and it aids sleep.  I'm sceptical but I'll try anything at this stage. There was a few articles online about the benefits of the oil for kids with Autism too but i can't vouch for it yet.
It was €16.35 for the 100ml bottle so here's hoping it helps.  I'll keep ye posted.  🤞🤞🤞

Prepare me... a revolutionary idea

Question for you all you special needs parents ... do you find it hard to prepare your children for things outside the home?
 Like the hairdresser, supermarket, doctor etc.  Would it make your life and theirs a little easier if service providers had visual aids or schedules to explain what was gonna happen?
For ex. The doctors.  Imagine a little visual schedule on the wall with pictures of what happens. Like from the waiting room, to a doctor's picture, and maybe the stethoscope or thermometer etc.
Imagine if these were everywhere? That's exactly what one young entrepreneur and student is trying to achieve with  her new concept " Prepare Me".
Caitriona is completing a post grad in autism studies and won a place with The Academy for Social Entrepreneurs of Ireland a couple of months back. It basically offers 6mths mentorship and support for early stage social enterprise.
She contacted me to gather some info about what exactly us parents would want and need when taking our kids out.
I love the idea of this.  I don't know how many times I've repeated to Kirsty " nearly done " or " home soon ". When she doesn't have a plan in her head she gets super stressed.

This idea could change life for many kids out there that struggle with not knowing what's happening next and the parents that try to prepare at home but we can only do so much.  We need service providers to help too.

Early Intervention... year 1 almost done.

My beautiful boy is almost finished his first year in early intervention. I can't believe how much he has grown. We had tears for months, biting to no end and so many hard days but  he got through them and only thrived.
When I break down the little milestones we saw him reach this year I'm blown away. When I say "we" I mean us and the ladies in his school. His teacher Karen and her SNA'S Nell and Margaret.  They are so hard-working and deserve all the credit. We love them. 💙

✅ We said goodbye to his dummy. Huge moment. 😊

✅ We managed to wean him from an iPad all day in school to none at all. The iPad stays at home now and I couldn't be more proud of him or the school staff for working with us. I know it wasn't easy for anyone involved. 🖒

✅ We started him on PECS and it's going so well. Slowly but surely and that's the way we want it. I must credit his speech therapist here too, the lovely Emily from Evolve Therapy who works tirelessly with him every week and accommodates me anyway she can. The babbling is increasing so much and those words are in there waiting to come out. 🤞 We've already had "daddad" sounds when he sees Brian and "bubbub" for his cup. And I definitely heard Momma once. It's so encouraging.

✅ He went from being fed in a highchair to sitting at a table and learning to feed himself. We're not there yet but he's trying. 😊

✅ And finally we got him travelling on a transport service and away from my car.  A huge adjustment and all in preparation for the school bus next year. I couldn't tell ye how much I love his escort and driver, Phil and Helen. 2 absolute ladies who adore him and his little transport companion Luke. Every morning he sits there waiting for Logan and his little face lights up when he sees him. 💙

All in all its been a huge year for him. I'll be devastated moving him from the school in Rathduff. They've taken such good care of him but Mallow is where Kirsty goes and I know he'll be in great hands there. I've seen how she has flourished and I can't wait for him to get the same chance.
From his first day to now, I can't believe how far he's come. I couldn't be prouder of my little Logie bear.
 💙💙💙

When the mind runs.


Tonight I was brushing Kirsty's hair and my
mind was wondering... probably because I was trying to drown out her whinging. She hates having her hair done. We limit the bath to twice a week but she still finds it so tough and because she has thick knotty hair it takes forever to do. So my mind drifts off. Mostly about random things that flutter in and out but sometimes one stays put.

For whatever reason I found myself wondering would she ever be doing her daughter's hair. And that's all it takes. The sad stomach feeling creeps in and I start wondering about our future. Will we have grandchildren? Am I awful for even wondering about it? Maybe I should know better. I don't even know if my daughter will be able to become an independent adult let alone become a mother. I see my mom with her and wonder if it'll ever be me. And I feel sad for Kirsty already if it doesn't happen.  Why do we get all these fears and worries? They are so futile and so upsetting. What good can possibly come of thinking that way? But yet I can't help it. It finds a way in and stays put.

So then I started thinking about Logan. Would he ever walk in home with a shy face and a girl behind him to introduce me to? Will I lie awake at 3am waiting for him to come home from clubbing sick with worry incase he's drunk? Or maybe I'll lie awake sad and heartbroken instead that he isn't getting to experience that side of youth. I know which one is worse to me.

For all my knowledge I sometimes feel like I'm back in 2013 and hearing the word autism for the first time ever. It might gets easier but it's never easy.  The smallest things hurt as much now as they ever did. I have no answers and that's the scariest thing.
The mind is a powerful thing. 😔