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. 💙💙💙