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. 😔

Baby books

Today I found these baby books I was given when I was expecting. I started flipping through them to see what I had written and I saw that they are practically empty. And I was heartbroken. Now I know you could easily forget to fill them out or get fed up after the baby is a few weeks old and just stop doing it. ( I mean who has the time to document every step of their baby's journey when they are dealing with a newborn !! And don't even get me started on the 2nd baby... sure you barely have time to take their photo at the start 🙈. )
But that's not what got me so upset. I realised that I had stopped because the kids just weren't hitting the milestones so I couldn't fill it up. I couldn't write Kirsty's first time waving goodbye or singing along to her favourite song because those things actually haven't happened yet. It must be 3 years since I stopped filling them out and still today I can't write those dates down. I can't fill in the chapter on Logan's first time saying Mama or Dadda because he hasn't said them. Those 2 iconic words that you dream about all through your pregnancy and after. When I got those baby books I so desperately wanted to be of those mothers tutting and saying " after all my hard work he says Daddy first. "
Now nothing would give me more pleasure than to hear my little boy call his daddy.

It's amazing how you can plod along in life and then something so unexpected can just floor you.
Reading those books, rifling through empty page after empty page I just felt truly gutted. I was consumed with a feeling of grief for what we have lost out on. I try to be positive and think of what is hopefully to come but what if it doesn't? Hope can be amazing but it also scares me. If our hopes and dreams for our kids don't come true, how do we live with that? Sure, we can only ask that they will always be safe and happy but I'd be lying if I said we didn't want more for them. Every parent does.

Flipping through that book brought me back to the days when we first heard autism and how absolutely devastated we felt. How everything was so unsure and unclear. I look at how far they have come and us, and I know we are doing everything we can do. But those empty pages tore through me. They were blank but somehow there was so much on them.

I almost felt angry at them. Like they were taunting me with their expectations of what a child should be doing at a certain age and time. Is everything that is acceptable in life on a schedule ? What about those that don't follow it? Where do they fit in ? Where is their baby book ? Maybe I should make one and call it " Their Steps ".
Their own little milestones at their own little pace and no guilt or hurt for the parents involved. Fill it out when and if you can, and if not write something else. Maybe my child didn't use a fork by 3 but they lined up every spoon in my drawer with perfect precision!!
It's an idea. I know a book like that wouldn't have resulted with me in tears tonight. I didn't have the heart to throw them away so for now they are hidden in a cupboard. Maybe some day I'll go back to them and complete those entries.
Some day...

💜💙💚💛❤️

Meeting grown up autism .

Today I had the most amazing encounter.
Me and my sister walked into Subway for breakfast and while we were ordering we spotted this young man sitting alone.
You couldn't help but notice him. He was flicking his ears every few seconds and checking his watch too. He spoke to everyone that came in and told a passing customer to enjoy their food.

5 minutes in there and we both knew. This was a young adult with autism. We sat down and within a few minutes he turned around and said to Joyce that she was gorgeous!!
He came over and sat by us and by God could this fella chat!!! We couldn't get a word in with him. 😂😂😂
He was talking to us about his books and the pictures he had with him. All about his favourite movies and his childhood.
I asked him where he was from... he had the strongest American accent but I wasn't surprised when he said Youghal. How many of your kids talk in an accent? He told us it was from watching too much tv. And then he said it... I have autism.

Maybe he didn't realise we knew but we did. Here was this young man. Happy, polite, well able to speak and hold eye contact but I found it so sad. You couldn't hide his traits.
He was just sitting there dying for a conversation. A security guard that was in the queue with us ignored him and laughed when he asked him where he worked. He was quite rude being honest, but this guy didn't even seem to notice.
He was such a nice fella.
And yes he talked too much about the latest Alien V's Predator movie and the star wars films but we didn't mind.
We were both thinking the same thing... I hope someone will be this nice to Logan or Kirsty in years to come if they are like him. He must have told Joyce she was gorgeous 10 times!! 😂😂😂

I told him about my situation and he said to me
" Don't let your kids go down the wrong path. Teach them to respect their special need and respect others".

Then he said he likes to compare people with autism to the mutants in X men because of their special gifts and talents. So he was only delighted to hear that Logan was named after the Wolverine from X men, James Logan!!
(That's a true story... Daddy is a huge fan.👌👌👌 )

After we left I'm sure he sat there and waited for more people. He had told us he liked to come to Subway most days as the staff were nice to him.
I don't know any autism parent that doesn't worry about the future. You worry will they be accepted and will people be cruel to them? He said plenty people had been cruel to him and then he stopped mid conversation and told us to listen to the song that was playing on the radio.
It was Kelly Clarkson " what doesn't kill you makes you stronger ". 😊😊😊
I swear you couldn't make this up!! We were skitting at him. He was parting all his wisdom on us. When we got up to leave he shook our hands and said he hoped to see us again.

I've been thinking about him all day.
I hope some day if my Kirsty is sitting in a cafe reading a book and flapping her hands or if Logan is banging his ears and watching an IPad somewhere they won't get a rude security guard. I hope they get someone like me or Joyce who will be respectful and nice.
It was nothing to us but I'm sure it meant a lot to him.