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. 💙

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. 😔

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.

Waiting.

So many people mail me or snap me about interaction and how to get more from their kids. Lots of kids with autism are happy to do their own thing and it can be hard to get their attention. A sure fire way to try and encourage interaction is by using the Hanen approach of "waiting ".
We did this course 3 years ago and I still use it everyday. First with Kirsty and now with Logan. You can do it with a multitude of things from singing to reading, even pausing the tv or iPad for a second. The aim of this approach is to try to teach the child that if they want you to continue what you are doing they need to give you a sign.
A sign can be anything from a gesture with their hand ( Kirsty used to put her hand to my mouth to get me to keep singing ) to a noise and hopefully, eventually a word like "go" or"again ".

Here are some tips we use.

1. Make sure the activity is something they love. If they aren't bothered when you stop it's not enough of a motivator.

2. It doesn't have to be singing or talking. Even something simple like pushing them on a swing or tickling. If they like it, it's a great little opportunity to get them to interact. We use 1, 2, 3 and then wait. And then wait some more !!! The waiting can be hard but it'll pay off.

3. If you are waiting and nothing is happening prompt. With Logan I'll wait and then if he doesn't vocalise I will say "go". And try again. The key is to increase the waiting from a few seconds to as long as it takes.

This technique really works for us. I recorded a little video of us practicing waiting so you all can see.
You will see when I stopped he began babbling, but I waited until he vocalised the word " home" as that's what I wanted from him. ( When you're starting off just the babbling is ok if that's all the language they have. 😊 )
When you get the interaction, be it eye contact or a sound it's always worth it.
I hope you all get some success too. Happy playing xxx

New goodies!!!

Hey everyone. I was in Mr Price on North Main street earlier and I picked up a few new toys for the kids. They were so cheap and they had loads !!! I could have got more but my sister dragged me out... apparently I have a shopping problem. 😂😂😂
Anyway I picked up new puzzles and magnets for Kirsty and a sensory toy for Logan. I'll talk about that first as it's the first picture.

He is not really into anything at the moment. We still haven't found "that thing " he loves yet. That toy or item that just clicks and really interests him. I say yet because we will keep looking. ( After all, hope springs eternal 🤞 )
He does like to play with a football but he'll only hold it in his arm so I thought this might be good for him. It's a ball but it has a rolling rainstick inside it too. They use these in the schools to teach cause and effect ( you do one thing and another thing happens) and because the rattling sound can be quite pleasing to a sensory seeking child. Kirsty used to love it. It teaches motor skills too as you have to rotate the stick in your hand to let the beads roll down. I think it was about 3 euro but I must have dropped my receipt as I can't find it so don't quote me!! 🙈🙈🙈

The next pictures are various insert puzzles with the alphabet and numbers. Ye all know how much Kirsty loves them. I pick them up wherever I can, especially big ones as she loves them the most. These can be quite dear in the big toy shops or online but these ones were bargains. Between €4 and €7 each I think but again I've no receipt.
Insert puzzles, especially ones like the chunky jumbo numbers one below, are brilliant for anyone starting out as they can be done with "hand over hand prompting".
This is what I will use to start Logan off, if I can keep him still for 5 minutes!! I'll just place my hand over his and drop the piece in. It's quick and you can reward immediately afterwards. This one is lovely and colourful too for grabbing attention.

Finally... new magnets. These were around €2. Colourful and fun, easy to use and great for matching and improving grasp and hand skills when sticking them to the fridge.
And with a bit of luck in time, some spelling too.

I love pound shops like Eurogiant or Mr Price. They're proof you don't have to go to places like Smyths to get your kids some fun stuff. I think I spent about €25 in total on all these.
Happy shopping everyone !! 😂😂😂

The Shine Workshop.

Last night I attended the Behaviour Management course with Alma Carroll from the Shine centre in Carrigaline. I was hoping to get some tips or help on dealing with the behaviours we struggle with at home. Because the kids don't speak it can be so hard to determine what they want or why they are acting a certain way. As a stay at home parent I usually have a good idea as I am with them all the time but there are plenty days when I'm literally standing there saying " what do you want "to them too. This just frustrates them and me.

The workshop was centred around thinking about things from the child's point of view. The aim was to try and teach us as parents, to think about what happened before the meltdown and what happened after.
Here are the few things I took away as most important and relevant to us.

1. The difference between a tantrum and a meltdown. 🙈
How many of us have been here. Stressed out, and wondering when their child is upto 90 is it a tantrum and a meltdown. Do you discipline them or can they actually help what they are doing? Is it their feelings or surroundings that is overwhelming them or is it just them trying to get their own way?
The answer is as follows. A tantrum requires a behavioural intervention. A meltdown requires a sensory intervention.

A child that is misbehaving can be reasoned with or calmed down ( not easily I include but it is possible ) but a child in meltdown has lost all their control and cannot cope with how they are feeling or their environment. Alma's advice here was to make sure they are safe and allow them to come out of it themselves. After trying everything with my kids I have to agree that this is the best solution in a terrible situation. Logan's goes into his high chair and I let him scream it out. Otherwise he will bite.
If I can, I'll try counting with Kirsty to 10 but when she is too far gone we put her onto the couch in the kitchen and walk out the door.
There is no reasoning with either of them in meltdown so we allow them to calm themselves. This is just our way... every family is different. Do whatever works for you. There is nothing more hard or heartbreaking as an autism parent than the meltdowns so each to their own. Once they are calm some positive reinforcement is so important. Even if it's just a high five for calming themselves down. Try to praise wherever you can.
( I'll struggle with this... apparently " I'm going to kill you if you don't stop screaming" isn't the best way to approach things. And all cursing is frowned upon. 😂😂😂 )

2. The important of eye contact.

Eye contact used to be our big thing. I would warm people
" Don't give her the ipad unless she looks at you, don't rewind the tv unless she looks at you " .
We used to practically beg her but Kirsty never maintained eye contact. Logan will almost stare into your soul so we never had the issue with him but Kirsty just does not like it. Look into her eyes and she will physically push you away. Even us as her parents. We get 2 or 3 seconds tops and that's it. I used to stress over it but as soon as we realised it wasn't the "be all" things became so much better. She does interact. She does play with us and just because she isn't staring at my eyes doesn't mean she isn't looking at me. Lots of kids with Autism use their Peripheral vision so they are looking from the side or around the face but the eyes are too much for them. And that's ok.
Last night Alma said they never force eye contact at the school in Shine. There is a reason why they don't like it and that has to be respected. Once again I definitely agree.

3. Lastly, the area of Rigidity.

We struggle with this. Both kids likes routine and it can be very upsetting for them when things change. Especially Kirsty. If you say you are going somewhere you must go there and you must go now. She doesn't do waiting and are doesn't do change of plans. It's important to work against this need to control things as it will only get harder as they get older.
I know it can be confusing. You are told routine and schedules are vital but when they become too rigid then that's a problem? If the child craves routine then isn't it important to give it and keep things the same? I remember asking a teacher about this and she told me that in schools checking the schedule is the routine but the schedule always changes. So it's the act of looking at it that becomes the child's routine, regardless of what is on it. In Kirsty's case it's part of her plan in school to deal with change so they use a change card. This is really tough for her .
For ex. The teacher tells Kirsty it is time to go out to the yard but when they go out it has started to rain. Now Kirsty has heard she is going outside so she wants to go but she can't. All hell breaks loose. They show her the "change card" and say the word "change" and try to offer her something else instead to do. It isn't an easy process but it teaches her that things can always be controlled and how to cope with that.
And it will take time. Like EVERYTHING to do with autism. Nothing happens overnight. I've learned patience I never knew even existed in our family. I come from a long line of O'Connells with zero patience!!!

All in all I found the workshop very helpful. These little refresher courses are great to get you thinking and you'll always pick up something. It was also lovely to be in a room full of people who are going through what you are. There were a lot of helpful suggestions from Alma, and from the other parents to each other and hopefully people enjoyed it. I've always said I learn more from other parents than I ever could from a book and that's still the case.

Many thanks to the girls from Shine. It was an eye opener. 😊😊😊

Being autism parents.

Lots of people ask me how do Brian and I deal with our situation. I'm sure they wonder how the stress hasn't broke us up yet and how do we cope as a couple knowing the future is so scary and unclear.
To be honest we've been through it all. Unless you are a couple in this situation you couldn't fathom it. We have dealt with every emotion that a couple could.

I'll start with guilt.

I know the question that burns in people's minds when it comes to autism. Some people even come right out and say it. Where did it come from, your side or his?
And I won't lie, I know we've both wondered. At one stage or another I'm sure we saw something in each other's habits or personalities and thought " Oh ya, that's where they get it".
I've felt guilty for thinking it and also felt guilty for any traits I have that I could have passed on. But the truth is that it came from neither side. No one in his family nor mine has ASD. Between us we have 7 sisters, 2 brothers, 16 nieces, 3 nephews and no autism, except with us. The rational side of me knows we have nothing to feel guilty about. The emotional side begs to differ. That's the harsh reality of the autism we know. It literally came out of nowhere.

Which brings me to another emotion... injustice.

Many a time we have said to each other why us? And that is not us wishing it on anyone else instead, just us wondering why autism happened here. I know we have both wondered if we had married someone else would it be the same? Is it just our DNA together that brought it into our lives? I don't know anybody that wouldn't ponder these things from time to time. " What if's" are human nature. Maybe it is unfair and I think it's ok to feel that way. Our kids didn't ask for this. For their life to be harder than others but it's here and we deal with it.

The strongest emotion in this marriage is love. As corny as that sounds it's true. We have been through the worst times imaginable and we made it out the other side. Endless nights of sleep with a screaming baby boy who just wouldn't stop. 2 and a half years to be exact. We still have 2am wake up calls from Kirsty who thinks it's time to get up and play. All of that pales in comparison to the heartbreak and worry we have for the kids and their futures. The underlying tones of sadness we feel when other kids around us flourish and ours are so far behind. Hearing child after child in our families say they love their parents and longing to hear it ourselves. The thing that gets us through is that we are in it together. No one knows how I feel but him and vice versa. That's a special bond to have, for any couple.

On days when the kids drive us spare, we say " It's us against them and them little feckers won't win." 😂😂😂
We may be their biggest supporters but we are the ones that get the most fed up of them too!! I'm sure it's like that in many households.
But at night when they are asleep, we remember we are still a couple and not just a mom and dad. Don't get me wrong... we fight. We absolutely bug each other.
Apparently I can't load a dishwasher to save my life and asking him to cut the grass requires at least 3 months notice.
He says it's grounds for divorce if I leave one more teabag in the sink but he thinks that it's acceptable to tear apart a basket of clean washing just to get the t shirt at the bottom of it. God forbid he actually put them away!!! 🙈🙈🙈

I wouldn't have it any other way. We are far from perfect but together we fit.
We are partners for life and I couldn't do this job without him. ❤❤❤

THE TESCO TAGS 😍😍😍

I just wanted to share a good news story with ye. I have a 5 year old daughter with autism called Kirsty. She is a beautiful funny quirky little girl and one of her favourite things to do is pull the red price tags off the shelves in Tesco. She holds them in her hand for hours and gets super excited. The latest one she has had since Saturday!! 

Today we couldn't figure out why she was so sad at home or in school. She just wasn't herself and because she is non verbal she couldn't tell us. I found the red price ticket out our back garden and her mood changed instantly. Within seconds she was smiling and laughing again. All over a little red tag. It's so hard as she couldn't just say " Mom, where's that tag I love so much !!" 

So I thought to myself ... "ok, we need a spare" !!! I went to Tesco in Mallow and asked the girl that was serving me if I could have one. She seemed a little puzzled but said she would ask her manager. She did and the manager, equally puzzled came over to me. I explained about Kirsty and showed her a little video on my phone of my girl with her tag, to which she responded " I'll see what I can do " 😊 A few minutes later she came from the stock room with a BOX OF PRICE TAGS!!! All different colours and sizes!! I was so touched. My aim was to get 1 maybe 2 and they gave me 41!! My daughter was beside herself. She had so much fun lining them up. It was such a nice thing for them to do so I just wanted to praise them publicly. Feel free to share!!

And now we have plenty spares!!

Lots of love from one very happy Autism Mommy and her daughter x

Elaine ❤

Anyone that wants to, can follow us on facebook at Life Upside Down, being an autism mom. 💙💙💙

Worrying about the future.

One of the reasons I found "Autism and me" so tough to watch was because of the fear of the future I carry around. Some days I can bury it and convince myself to not even think about it. Those days I'm living one day at a time and focusing on the next hurdle ahead for us.

But other days... It's all I think about. What about when they are older? I haven't met an autism parent yet who doesn't worry about the same thing. I have questions that circle around my brain begging for answers.

1. Will they ever live independently ?
2. Will they be able to manage money or drive?
3. What happens when we are gone ?
4. Are we looking at residential care ? How will we afford it?
5. How do you explain periods or the stresses of puberty if they are still non verbal then ?

I could go on.
Aside from the concerns we have now with speech and school etc. there is a whole other world that comes with being a parent to a special needs adult. If Logan is hard to manage and restrain now at 3, what about when he is 23?
And yes it's cute and funny when Kirsty goes up to perfect strangers and smells them at 5 years old but what about when she's 12 or 13. Not so funny then. You are entering a different place with boundaries and rules, that as adults they need to follow. But how do you teach them ?

I know there is no answer. There is no way of knowing how they'll end up, what kind of adult they'll be. Watching the documentary gave me some hope, but it also felt like I was being shown a preview of years to come. As if someone was saying " prepare yourselves, here's what you can expect ".
I suppose because a lot of kids I've met with ASD are still young, the older kids are not what I'm used too. Seeing how they navigate the world when they aren't babies anymore was hard. There's a sense of innocence when they're young. They are oblivious to the fact that they're different.
The older those kids got, the more aware they seemed that they were different, they knew they stood out. It didn't seem to bother some of them, others it definitely did.

 As a parent you can't shelter them from that anymore. Their peers become their judges and they are open to hurt and upset from the whole world.
The catch 22 is that even though I worry about not being able to shield them from hurt, I also worry about them being so severe in their autism that they'll never feel it to begin with. How can you win when you want them to progress so desperately but you worry about what comes with that progression too?

And will it ever leave me? This constant worry and aching about their futures? Maybe not. I'm my own worst enemy. Worrying about things that may or may not happen.
Tonight is one of those nights I'm trying to reach far into the future to see what's ahead. Hopefully tomorrow I'll be back in 2017 and taking each day as it comes.

Xxx
Elaine

Explaining autism.

Where would you even start ? Trying to explain something so complex and ever changing. People ask me all the time.
Everyone knows the technical answer. We've all heard the terms. " Neurological disorder, social and developmental delay"... type in autism into Google and the first response is " A disorder of social disconnect ". All these terms can be so daunting and scary. If you're a new autism parent what does it all mean?

Firstly, autism is a spectrum disorder. The word spectrum literally means an array of things. And this is certainly true for the autism I've encountered. No 2 children with autism are the same. I have 2 myself. Both diagnosed before their 2nd birthdays with the same condition, but 2 completely different children. When Logan was diagnosed we started all over again, as if it was our first time.
Even though our kids are so different there are a few traits or behaviours that kids with autism seem to share. A few similarities that enabled the powers that be to come up with an overall term to fit them all. The best way I can describe them is to talk about my own little girl and boy.

The social aspect of everyday life is one of the most challenging aspects an autistic person deals with. When you are young you listen and learn. You watch adults talking, watching each others expressions to gauge responses and taking turns in order to listen and converse with each other. Some kids with autism don't do that. They can't do that. Their brain tells them " Don't make eye contact, I don't like it". Kirsty doesn't see the need for play. If she wants us to help with a puzzle or the Ipad she'll engage us, but other than that she is happy on her own. I'm sure her little imagination runs wild but she doesn't see the point in playing with others. She is that girl you see playing on her own at a party, while a group of 10 kids huddle around the Mickey Mouse or face painter.
Or that kid that just doesn't get invited because the other kids think he's weird.
I've heard the conversations..." all he does is talk about trains, it's boring".
So he stays home. With his trains.
These are some of the most heartbreaking scenes a parent can watch. Acceptance is a thing some can only dream of for their kids.

Our kids are wired differently. Their little brains see things we don't.
Take this example.
I see a pack of magnets in a shop, I see an array of colours and sizes. I know I could organise them if I wanted to but it doesn't bother me that they are mixed up. It bothers Kirsty. She sees multiple colours and sizes and in her head it's all wrong. She needs to put the red with the red and the blue with the blue. That's right for her.
Kids with autism crave their routine. The same foods, the same tv programmes. If it's familiar then it's safe. Just last week I bought custard pots from Dunnes instead of Aldi. No way would Kirsty eat them. They looked and tasted the same to me. To her they were miles apart. Her little mind works in facts and that was incorrect!!!

Logan is not as rigid as she is. His biggest problem area is around his anxiety. Lots of kids want cuddles and reassurance but they are happy to potter around in between. For Logan, the need for reassurance is constant. The world scares him. Sudden noises, changes in his habitat, if he doesn't expect it, he can't deal with it. He looks to us for something familiar and runs for the nearest door. He visibly relaxes once he's home.
He lives for his own surroundings. It's tough to bring him anywhere that he doesn't know. When we do go anywhere new he clings to the buggy and focuses completely on the iPad so he has some sort of familiarity. Even at that, the timer is running in his mind. Once the buzzer goes it's home time and no one or nothing can calm him down. My heart breaks when I think of him in years to come. The thought that life will always be this hard for him is more than I can bear.

The truth about autism is that it's not understood. Our kids are living in a world that they don't understand and that doesn't understand them.
Why does Kirsty feel the need to smell a strangers hand or flap her own?
Why does Logan not see that Monkey Maze is fun, much more fun than the car or home?
The world doesn't get them.
Even their little bodies don't sleep like we do. Kirsty can wake at 2am every night and not even yawn until 9pm that night.
Why can't they just talk? A child once said to me " it's easy, just tell her open her mouth and the words will come out ".
And many an adult has said to me " if she's hungry she'll eat it".
Unless you live with it you just can't explain but eucation is what we need.
Education, awareness and a little understanding along the way.

❤❤❤

Holding objects.

Do any of you have kids that constantly hold things in their hands? Ever since mine were little they have done this. As soon as Kirsty could grasp objects she held onto them for hours and then as she got older, days and weeks at a time. Everything from toothbrushes and spoons to the infamous frying pan and the latest obsession... the red snooker ball. For whatever reason, she just loves to hold things in her hand. Logan is the same. When he was tiny it started with empty plastic water or juice bottles. Now it's books or empty puzzle boxes. Just recently he was quite attached to an empty quality street box. He carried it around for days!! I've always wondered why they do this. I know it's some sort of sensory requirement but because they are non verbal they can't tell me why they feel the need to do it. My curiosity gets the better of me with things like this so I consulted my good friend Google!! I like to look at online forums, and read the discussions. You'd be amazed what you can learn!!
I googled " holding objects " and this answer really struck me. This teenage guy with Aspergers was asked about holding objects and he explained it by comparing it to a hug.
The part that interested me was when he said " he gets a strange aching pressure in his hands when he doesn't hug or hold something ". Kirsty and Logan both get so excited when they have things in their hands but at the same time it relaxes them. I sarted to think of how I feel when I'm hugged. It's so comforting and feels lovely. As humans we crave closeness, but unfortunately a lot of kids with ASD can't tolerate that kind of interaction. Take Kirsty for example. She is a very affectionate child but it's all on her terms. Some days she clings to us for cuddles, other days she will push you away and say " go away " when you try to hug her. I think this helps to explain why she is so attached to objects. Holding them is like a hug for her hands. Maybe her hands are where she feels that strange and aching pressure. I certainly see her visibly relax once she holds those things she loves, and if they are lost she always finds another thing to replace it.
For Logan, who has no problem at all with hugging, the objects seem to serve as a constant comfort. He needs that feeling all day long. To manage his anxiety and his stress levels we squeeze him as much as we can but obviously we can't do it 24/7 which he'd happily love. Logan is on the other side of the spectrum where this is concerned. He is that child that demands physical contact all the time. I've often had throbbing arms from him.squeezing them all day long. He craves it so much,that again I go back to that " strange aching pressure" feeling my Google friend described.
Is that why he does it? Jesus I'm rambling on!! 😂😂😂
I wish they could answer some of the million questions I have in my head somedays. Maybe someday they will, and then I'll have an answer!!
Until then, I'll keep researching to try and shed some light of the traits of autism in our house to share with you all.
I've always felt that sharing spreads awareness and the more we have of that the better!!

Elaine.
❤

Hey guys.  So I've been humming over this post for a while now. Lots of people mail me about this topic, the topic of the MMR vaccination. They ask my opinion and wonder should they vaccinate, is it safe, what advice I can offer etc. so I'm finally gonna address this old taboo subject. 

Let's get one thing out of the way before I start this post. These are my views and mine alone. This page offers my personal opinions on all things autism, and they are in no way an indication of how anyone else should feel.  Don't riot please !! 😄😄😄

I know this topic is very emotional for some people so if you're reading this and your view is the total opposite, that's ok. I won't be offended and neither should you be.

So the V word... vaccines. 

One small word, and it can spark a debate among millions.  Some people will rally around the importance of vaccinating kids while others will plead and beg with parents not to do it. There are pros and cons as with anything, but when the MMR vaccine was supposedly linked to autism, the world went crazy. 

Here's what happened...

In 1998 a Dr Andrew Wakefield released a publication that claimed the combination measles, mumps, and rubella (MMR) vaccine caused autism. But this was an elaborate fraud. It wasn't just that his claim was wrong. It was that it was utterly fabricated and wrong.

Dr. Wakefield claimed was that because the MMR vaccine was given as a combination, it overwhelmed the immune system. Not a single aspect of that claim was correct, and more importantly, nothing was studied. The studies came later, and it was found that the occurrence of autism in the case studies was the same in the vaccinated group as it was in the unvaccinated group. So autism was prevalent in kids both with and without the vaccination. That alone is enough to prove there's no link in my opinion, but then the researchers went on to admit later that they fabricated, tampered with, and even hid adverse data and results to back up Dr. Wakefields theory.

To add to the deceit, it was also discovered that Mr Wakefield had been funded by a pharmaceutical company who were trying to introduce their equivalent to the MMR vaccine. They were proposing the same product but as 3 separate vaccinations instead and therefore costing 3 times the price. He was directly funded by the competitors of the product he had tried to stop people from using. Talk about a hidden agenda!!

Irreparable damage was done. Thousands of parents chose to not vaccinate their children and many parents who already had, blamed the MMR vaccine for stealing away their children and replacing them with a quiet, strange child whom they longer recognised.

Others, me included, knew that their child was born with autism and although I have always been convinced of that, I still struggled on the decision to vaccinate our second child. 

What if there was some truth to it? Could I live with myself if it meant I was increasing his chances of ending up like his sister?

I heard a friend say after her daughters vaccination that "a light just went out in her ". That scared me.

On the other hand what if I didn't vaccinate my Logan and he developed Measles, Mumps or Rubella? How could I live with myself then? That scared me even more.

Someone once said to me, "But even if it did cause ASD, wouldn't you rather have that? ASD won't kill the child like any of those illnesses could" 

What about those kids with compromised immune systems? If my child is not vaccinated and in contact with them, am I jeopardising their health too?

I went back and forth until I had all the information I needed. Until I was satisfied that the whole MMR/ Autism debacle wasn't true. The negative ripple effect of that "so called study" is still evident to this day. I know many parents who still refuse to use the MMR vaccine, despite the protests of nurses, GP's etc. 

It's a personal decision and a tough one at that. 

For us, it was knowing, no matter what we did, we couldn't have prevented our child's autism. Knowing that we certainly didn't cause it helped us make the decision to vaccinate. 

Every year there seems to emerge a different reason why autism occurs. I've heard them all, from C Sections to not bonding with your children, taking paracetamol during pregnancy and your diet. We seem to crave an answer as to why this happened, no matter how silly or unlikely it might be. I can understand why. I sat on my couch after Kirsty was diagnosed and all I wanted to know was why this happened and how could I prevent it happening again. It's human nature to need a reason or something to blame. It saves us from the not knowing which can drive anyone crazy.

The evidence was there for us all along. In the videos of Kirsty rocking and flapping at only 3 months old or Logan going around in circles as soon as he could stand, which was months before any vaccination appointments arrived.

At the end of the day it was admitting that the traits of autism were already there, long before the vaccines came, that helped me cement a decision in my mind and stick to it. No one can make that decision for you. You have to live with it so give it time and consideration. For a lot of people the time creeps up on them and they feel pressure to make a decision quickly. If you're unsure talk to your GP or nurse or even hold off until you can decide comfortably.

It was right for us, so I am definitely for vaccines. But again, that's just me. I hope this helps anyone struggling to make that decision.

Thanks for reading guys.