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.

Christmas.

It's that time of year again. Everyone is happy and excited and all children hear is Santa Santa Santa!! I have always loved Christmas but I have to put it out there, its twinged with a little sadness for me. We get past Halloween and get to November and I start to feel that ache in my tummy.
The ache that another year has passed and our kids still don't know who Santa is or why we have to put a big glittery tree in the middle of their front room. It is hard to put on the brave face and smile when shopkeepers or strangers ask them "what is Santa bringing?". I do it myself to kids all the time. I think the whole concept of Christmas is all about children. They make it. So its totally understandable that the adults focus on them.

Before we had autism in our lives, I imagined Christmas the same as everyone else. Posting letters and hiding presents in Nana's house. Assembling toys at 3am when they were asleep and leaving cookies and milk out for Santa and Rudolph. I even looked forward to running around toy stores like a maniac looking for that one toy they just had to have before it was sold out. Sadly we don't have any of that. The harsh truth is that Christmas day will be just like any other for us. We'll try our hardest to make it normal. There will be presents under the tree that they may or may not look at. We will make a big deal out of all the new stuff and keep hope alive that they'll get caught up in the excitement. Maybe this year they will. Today I kept saying "Santa" to Kirsty and showing her his picture. Maybe she will take it in, in some way... even it it's just to herself. I think Logan is still too young to even try to get it but maybe that's just me trying to make myself feel better. Do 3 year old children have much knowledge of Santa? I honestly don't know. All I know is autism. I hate that feeling of not having the same Christmas experience everyone else gets. It feels too unfair sometimes, like our life is hard enough, but this is too much. Like even autism took a step too far. Most things we can take but this one hurts.

This year I'm making a conscious ( and extremely tough at times) decision to focus on the good. I'm not usually good at that stuff.  I tend to deal with the negative stuff better. I say it out and that's how I deal with it and then I move on. But so many people are worse off than us this Christmas I want to try to keep that in mind. With luck we won't be spending Christmas at a cemetery crying or in a hospital ward sick with worry. We won't be in a cold doorway wondering where our next meal is coming from or lying awake at night thinking how we will pay for all the things we need to buy. We have a home, 2 healthy happy children and a family we can rely on. Much more than many others will have. I'm not saying it won't be hard. It will be a sad day. I 'm sure we will cry like we did last year but then we will dry our tears and smile and enjoy what we have. Even if it's not the normal Christmas, it's still ours and sometimes, that's enough.

To make Christmas a little more autism friendly here's a few tips that work for us. 

* One gift at a time.  Last year we laid them all out together and it was overload for Kirsty which resulted in her leaving them all. This year I'll introduce them bit by bit over the day. 

* Stop the big busy visits. It was far too much for the kids last year so we have had to adjust. This year we will go visiting on Christmas eve and Christmas day will be spent at home where they are most comfortable. 

* Buy sensory friendly toys. This year Santa is bringing a bubble tune, a disco ball, an indoor hammock swing and a pop up tent. All fun and functioning at the same time. 

* Remember that it's just another day for some of our kids. I will let them eat their normal food and try not to let it hurt. Some day they might demolish a Christmas dinner. You never know !!

* Christmas clothes!!! The hardest one for me as I love dressing them up.  I have had to try to accept that they may not like them or even stick them on for 5 minutes. Kirsty may spend this year naked. If I lucky I'll keep jammies on her. Once again we adjust. I'm hosting dinner this year for 9 adults and 4 kids, all who will be attending in Mickey Mouse pyjamas. How bad!!!!

Merry Christmas everyone.  I hope it's happy and more importantly peaceful xxx

Funny about food.




Autism and food issue go hand in hand. I've met a lot of autism parents and almost all of them have problems around food with their kids.
For some its sensory related. 
Kirsty has huge issues with smell. She'll smell everything before getting near it and if she doesn't like the scent it's a no. While Logan is a bit more adventurous with trying new things, his diet is still extremely limited. Many kids with autism just simply don't recognise things as food. Take Kirsty for example, with sweets or taytos. In her lifetime she has never even tasted a sweet or a tayto. Everything from Pringles to lollipops, we have tried to entice her with and she has never bitten. If I bring her to a party, she'll completely ignore the table with treats. She just doesn't see it as food. Kirsty has been eating the same foods for years. Crunchy foods like Liga, bread rolls and biscuits suit her as she prefers to eat with her hands. It took us and the school months to get her to use a fork!!! She will eat things like potatoes or Weetabix once they are blended... no lumps allowed !!! I bought a blender when she was 3 months old and its still going strong!!
With Logan if you get him hungry, he'll try anything but I've learned not to get too excited. The other night he ate toast for the first time and we were thrilled. Fast forward to the next night and the toast was flung!! He changes his mind about things like the weather and like Kirsty, he has never touched a sweet or taytos. We must be the only parents on earth that are actively trying to get our kids to eat rubbish!!


For other kids with autism, it's purely habit and the rigidity of their ASD. Kids with ASD love routine and its hard to break it. I've heard of kids that just eat chicken and can happily go months eating the same meal, if not years. As I said earlier, Kirsty has been eating the same food for years and is happy to do so. After months of trying ( and throwing away ) Mc'Donalds chips, she finally decided to try them and now she loves them. Success!! Again, the only parents ever to delight in their child eating fast food. The first time she tried chocolate buttons it was the best day ever!! Now she will chance her arm some mornings and ignore the Weetabix while requesting with her chocolate picture!! Typical woman...loves chocolate!!
I make light of it but it can be a serious issue. As a mother it's heart-breaking to check your child's lunchbox after a day in school and find it full. I've had days of tears when she just refused to eat anything but Liga. After years of trying to guess what she wanted the PECS book was a god send. To be able to communicate with her and hold up options that she can choose form is amazing. It has halved our frustration.


Here are a few tips I've picked up along our journey.




1. Don't force the issue. I once tried to fool Kirsty by hiding Rice Krispies in her Weetabix and she was not impressed!!
2. Leave the food lying around. Our kids need to investigate before they commit!!
3. If it's a sensory problem, introduce the food slowly. Allow them to touch it and feel it before they ever need to try eating.
4. Keep trying... just because they refuse it once, or even 10 times, they might try it eventually.


Food will always be a struggle for us. When people say " she'll eat when she hungry" they don't realise that kids with autism will starve before trying a food that is new or strange to them.
it can be so upsetting. For everyone involved. And don't get me started on eating out in restaurants!! Unless they do mashed potatoes, mine will be fed at home!! We had 2 weeks in Spain last year, and had to buy potatoes in the supermarket to give them before we left to go out at night. Autism turns parents into soldiers and everything is done with military precision!! We bring an endless supply of Liga wherever we go.


As a wise Cork man once said "Fail to prepare, prepare to fail" !! Words to live by in this house!!!

Things it hurts to hear as an autism parent.

I rarely lose it. I keep my cool when people ask me things like " What if they never talk?" or say things like " just put the food on her plate, if she's hungry enough she'll eat it. " I politely explain that she has sensory issues when inside I'm screaming "you don't get it... she would actually starve before eating that". I keep cool because I 100% understand that people don't get it.  Through no fault of their own, of course. It's simple... if you don't live with autism there is no way you could get it.
Only another autism parent knows the sheer joy of seeing their child finally try a new food or make some attempt to say a word that you have repeated 7 million times.
But even I have a limit. I draw the line at things I think people should have the common sense they were born with not to say.  Just the other day at my slimming world group I was waiting in line. I had Logan in his buggy watching his Ipad. He wasn't screaming, crying or trying to get out. For him, I couldn't ask for more and I was happy he was being so good.  On my right I could hear 2 older ladies commenting on how ingrained the kids are with technology these days, their subtle tones of disapproval not going unnoticed by me. I was sure I even heard a tutting at one stage but they forced a smile when I eventually stared over at them.
Like I said, I normally keep it cool but they'll never know how hard it is for a child like Logan to just sit in a buggy, in a busy room and not get overwhelmed. I do.

Anyway... the queue moved along and a girl sitting next to me on my left, who had her own little baby in a pram, started chatting to me about Logan.  She then asked him a question, something along the lines of " is Santa coming ? What's he bringing?"
I got the usual pang in my chest I get when people talk to him and expect a response before I launched into my trusty " he is non verbal, he has autism ". To which this lady replied... " Oh you'd never think it by looking at him.  "

Yes. Seriously. People still say that.
Now maybe it was the other ladies that had started the fire in me by talking about the Ipad but for the first time ever, I retaliated. I looked at her and said "I'm not sure what autism is supposed to look like really".
Cue awkward silence, followed by quick backtracking about how she meant he just seemed so happy.  Are the 2 mutually exclusive?? Is there a rule that says kids with ASD can't be happy?? Whoever made that rule never saw Kirsty running around the house naked or saw Logan jump with delight at his favourite part of Mickey Mouse.
I answered that he is actually quite a happy child and to her immense relief I'm sure, she was next in the queue.
(I'm sure she won't be sitting next to me this week !!)

Maybe she didn't mean anything hurtful, I'd like to think not. I do know that for every 100 times you hear a comment like that as a autism parent, there are 99 times you'll nod politely as you die inside. But there's also that 1 time that you just can't help it.  You'll say what you feel and to hell with the consequences.

I guess the moral of my story is that we as parents, have feelings.  Raw, weary, extremely strong feelings that bubble close to the surface every day and to which the smallest thing may cause to overflow. Be kind and think how you'd feel if you were that parent. It's hard to be PC all the time I know but sometimes it's just takes common sense.

Xxx
Elaine.

PS.  The following comments are also best avoided with me!!!

* He's just being bold.
* Should she really spend that much time on the Ipad?
* It's about time she gave up the Liga.


  Thanks Y'all.