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
Monday, 5 December 2016
Thursday, 24 November 2016
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!!!
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!!!
Sunday, 20 November 2016
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.
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.
My first blog post...An introduction to the kids.
Welcome to my blog everyone!!
For those of you who don't already know about them, I'm going to do a short introduction to the stars of the show, Kirsty and Logan.
Kirsty.
Kirsty is my funny, quirky, little 5 year old girl. She was diagnosed with ASD (autism spectrum disorder) just before her 2nd birthday. She wasn't speaking or playing with other kids or toys and was just content to watch the same episodes of Mickey Mouse Clubhouse over and over again. Kirsty was our first child so I wasn't the expert I am now!! I wasn't sure what it was but we knew something wasn't right. She also rocked and flapped constantly. We took her to the public health nurse at 16 months and our worst fears were confirmed. She was diagnosed at 23 months old and lives changed forever. At 5 now, she is currently attending an ASD unit and has been flying along. We are slowly getting there with the odd few words but she is still considered "non verbal ". She communicates mainly through the use of a PECS book. PECS stands for Picture Exchange Communication System, meaning Kirsty has a book with pictures of things she likes or wants and she hands them to us as a way of requesting. Of course, it's not as effective as speech but it has greatly reduced the levels of frustration she feels. With a bit of luck, she'll talk soon. :)
Her favourite things are puzzles, and lining objects up. Everything from my cutlery to her toys!! And she loves magnets too.We have magnets everywhere!! She melts my heart with her smile and although she prefers her own company, there are some days when you get her in the right mood and her cuddles are the best thing in the world. She also has a penchant for being naked but we try to keep that at bay!! LOL!!
Here she is...
Here's a little example of what she does best, lining up. :)
Logan.
Logan is our sweet little boy, aged 3. He arrived a month after Kirsty was diagnosed....God only knows how I got through that pregnancy, but anyway!! Logan seemed to be fine until around 13 months when he walked, and then the signs of autism became more prevalent. Maybe they were always there but I didn't want to admit it. He always had brilliant eye contact and wanted to play and engage with us, totally different from his sister. He began walking around in circles and flapping and again, he wasn't speaking either. History repeated itself and we had him diagnosed with ASD at 19 months old. There are no words to express how we felt. Life had dealt us another huge blow and we just had to accept it and move on. The tears seemed endless at the time and still do some days, but we do the best we can. Logan just turned 3 so he has started in an ASD unit and has settled really well. He loves nothing more than tickles and chasing and will watch nursery rhymes on Youtube all day long if I let him!! He is the sweetest, most sensitive little guy and his whole face lights up when he smiles, as does mine!! He doesn't really have much interest in toys yet, but all sensory things absolutely thrill him so he loves bubble tubes, beanbags and trampolines. Anything to do with water and jumping on my bed and he is happy!!
He has also just started out on PECS as he is non verbal too. It's slow but it's working little by little.
Logan has an issue with biting which we are working on, but other than that, he's the best.
Here he is. :)
So, there they are. Thanks for reading, and stay tuned.
x
Elaine
For those of you who don't already know about them, I'm going to do a short introduction to the stars of the show, Kirsty and Logan.
Kirsty.
Kirsty is my funny, quirky, little 5 year old girl. She was diagnosed with ASD (autism spectrum disorder) just before her 2nd birthday. She wasn't speaking or playing with other kids or toys and was just content to watch the same episodes of Mickey Mouse Clubhouse over and over again. Kirsty was our first child so I wasn't the expert I am now!! I wasn't sure what it was but we knew something wasn't right. She also rocked and flapped constantly. We took her to the public health nurse at 16 months and our worst fears were confirmed. She was diagnosed at 23 months old and lives changed forever. At 5 now, she is currently attending an ASD unit and has been flying along. We are slowly getting there with the odd few words but she is still considered "non verbal ". She communicates mainly through the use of a PECS book. PECS stands for Picture Exchange Communication System, meaning Kirsty has a book with pictures of things she likes or wants and she hands them to us as a way of requesting. Of course, it's not as effective as speech but it has greatly reduced the levels of frustration she feels. With a bit of luck, she'll talk soon. :)
Her favourite things are puzzles, and lining objects up. Everything from my cutlery to her toys!! And she loves magnets too.We have magnets everywhere!! She melts my heart with her smile and although she prefers her own company, there are some days when you get her in the right mood and her cuddles are the best thing in the world. She also has a penchant for being naked but we try to keep that at bay!! LOL!!
Here she is...
Here's a little example of what she does best, lining up. :)
Logan.
Logan is our sweet little boy, aged 3. He arrived a month after Kirsty was diagnosed....God only knows how I got through that pregnancy, but anyway!! Logan seemed to be fine until around 13 months when he walked, and then the signs of autism became more prevalent. Maybe they were always there but I didn't want to admit it. He always had brilliant eye contact and wanted to play and engage with us, totally different from his sister. He began walking around in circles and flapping and again, he wasn't speaking either. History repeated itself and we had him diagnosed with ASD at 19 months old. There are no words to express how we felt. Life had dealt us another huge blow and we just had to accept it and move on. The tears seemed endless at the time and still do some days, but we do the best we can. Logan just turned 3 so he has started in an ASD unit and has settled really well. He loves nothing more than tickles and chasing and will watch nursery rhymes on Youtube all day long if I let him!! He is the sweetest, most sensitive little guy and his whole face lights up when he smiles, as does mine!! He doesn't really have much interest in toys yet, but all sensory things absolutely thrill him so he loves bubble tubes, beanbags and trampolines. Anything to do with water and jumping on my bed and he is happy!!
He has also just started out on PECS as he is non verbal too. It's slow but it's working little by little.
Logan has an issue with biting which we are working on, but other than that, he's the best.
Here he is. :)
So, there they are. Thanks for reading, and stay tuned.
x
Elaine
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