Might League Moms


Thursday, 27 June 2013

The Importance of Mr Potato Head's Glasses!

‘Where are the glasses? Where ARE they?’  7 words. 7 little words. 7 words that strike terror into the heart of the Henretty household.
I can picture you sitting reading this, screwing your face up and wondering who, other than Mr Potato Head, cares about Mr Potato Head’s glasses?
A little boy, aged 4, that’s who! Our little boy.
Caidan, the 4 year old in question, was diagnosed with Autism when he was 24 months old. We always knew something was a little quirky about him, even when he was only 6 months old. He would stare at his hands in front of his face , or constantly wave them about in front of his eyes. He was never still. He would lie on his back and kick both legs in the air and smack them down on the floor with an almighty clatter, over and over again. It must have hurt, but he never flinched.
When he was 11 months old, we decided we needed to see someone as Caidan had missed all his major milestones. He only learned to roll over at 10 months old and even at 11 months he couldn’t sit up unsupported for any length of time. So, we did the GP thing and were referred to a Paediatrician. The word Autism was never mentioned and never entered our head. But we had a follow up appointment booked for 6 months later and at that appointment I walked in and told her that my son had Autism. In those preceding 6 months, Caidan had regressed in his development. He had stopped being able to eat solid food and he was unable to walk. He had lost his speech and he completely ignored us when we called his name. He had no idea how to play with toys and had no interest in interacting with any of us.
Now, my best friend goes by the name of Google and after much researching on his various ‘symptoms’ the word Autism just kept rearing it’s head, hence me telling the Paediatrician what I did! Anyway, long story short, he was assessed by the specialist team at our Children’s Hospital and was formally diagnosed with Autism on 8th July 2011.
‘But what about the Mr Potato Head glasses??’ I hear you cry!! Well, often, people with Autism can have an attachment to a particular object. It’s like their comfort. It makes them feel safe and secure and without it they get frustrated and anxious. Mr Potato Head’s glasses are Caidan’s ‘comfort.’ He rarely has them out of his hands when at home. I don’t think I have a photograph of him without these little yellow glasses in his hand! We have ‘a pair and a spare’ at home, in the hope that we will not have a glasses emergency. But it has happened. For 3 days last month we hunted the house, high and low, with no sign of either pair and one very unhappy little boy! Thankfully the lovely lady selling a Mr Potato Head on Ebay was very understanding and she posted it out almost immediately. Then another lovely young lady on Facebook, also with autism, found a pair in her bedroom and promptly sent them to Caidan. So we are back to having a pair and a spare again, and somewhere in the house there are 2 pairs of Mr Potato Head glasses, which may or may not be found!! So, you can see why, when we hear those 7 little words, that we all jump up and start searching, hoping against hope that the glasses are under the footstool, or in his bedroom, or in his toybox. Caidan is not the world’s best at remembering where he has thrown something, so he is absolutely no help!
So now you can see the importance of Mr Potato Head’s glasses. If anyone has any that they don’t want, all contributions are gratefully received!!

                                                  Caidan with THOSE glasses!!

As far as Caidan is concerned now, 2 years after his diagnosis, things are hugely different! His speech is fantastic, he can eat the same food as any other 4 year old. I say ‘can’ because he can, but chooses not to, although he eats lots of fruit, he prefers pizza and chocolate buttons above all else!! His Autism still presents and always will present many difficulties. His social skills are pretty poor, his independent skills are not great, but in every way, every day, we see improvements. We are hopeful that in the next couple of years he will be doing many more things for himself. Autism has also given him an amazing memory and capacity for learning. He could recite and recognise the numbers 0-100 by the time he was 2 and a half. He can say and recognise the whole alphabet AND tell you words that begin with each letter. He can name you almost any animal that walks this planet from a picture.
Caidan has Autism but Autism does not have Caidan. It is only a part of who he is. He has his own personality, his likes and dislikes and a very strong will!! He loves cuddles, gives great eye contact, he can now start a game or a conversation, he initiates play and loves to interact with adults especially. In many ways he is just a typical 4 year old boy. In other ways, he is so much more than that! He is our pride and our joy. Our little warrior. And we wouldn’t change a thing about him. Not for anything. 

Except maybe the reliance on those damn Mr Potato Head glasses!

Thursday, 20 June 2013

When is a disability not a disability?

Recently, I seem to have read quite a few things from people who state categorically that autism is NOT a disability. It kind of got me thinking, where do I stand on this? I know that I don't look at Caidan and think 'disabled.' But then I don't look at him and think 'autistic' either, but he is.

Many people have invisible disabilities. Mental illness, arthritis, fybromyalgia etc. But people can't tell just by looking at them. It seems that in order to be considered disabled, you have to have a physical disability, an obvious one. In fact at times, it appears that only those who use a wheelchair are considered disabled.

Well, I call bullshit on that. Any condition that prevents someone doing everything a person without any illness can do, has a condition that is disabling.  They are not able to do things others take for granted. Take my son for instance. Other 4 year olds, with no disability or invisible disorder, can take their own jackets off, put them back on, can eat with a fork, they are (mostly) toilet trained, they can tell you when they are hungry, they can tell you when they are thirsty, or when they are feeling ill, or when they don't want to do something or when the do want to do something. They can tell you if they want juice or milk, or what particular cereal they want or whether they want pizza or chicken nuggets. My son can do NONE of those things. Autism makes him NOT ABLE to do them. Therefore, it stands to reason that he is disabled, surely?
Now, I get and understand that many people with autism don't consider themselves disabled and that's fine. Many who are higher functioning and many with Asperger's, they can grow up, get a job, get married, have kids and put their own jackets on, so I guess I can see why they wouldn't consider themselves as disabled. They may have social difficulties and maybe some communication difficulties, but they can generally live an independent life. So yes, I get that they would be a bit miffed at being called disabled. But for many, many more people with autism, or mental illness or other invisible conditions, life isn't like that. They may be non verbal, they may need support for the rest of their lives, they may have no hope of living an independent life or getting married or getting a job or of ever putting their own jacket on. How can they NOT be considered disabled?
More to the point, why do some people see the word 'disabled' as an insult? Some of the most intelligent, inspiring people I know are disabled. It  is in no way an insult nor should it ever be taken to mean that someone is worthless or fit for the scrapheap. That is so far from the truth it can't be put into words. Disabled people have a spirit that is amazing. All the obstacles they have to overcome to do things others do easily. That takes strength, courage and commitment. In no way is the word disabled an insult to anyone.

There is far too much judgement goes on in this world. Far too much finger pointing without thinking. Next time you see someone walk out their car into the supermarket, don't automatically assume they are not disabled. Most likely, they have a blue badge, which is not easy to get, believe me. Chances are they have an invisible disability. So think before you judge. In fact, why judge at all? Everyone has a story and it's not always visible to everyone. Think first, think 'invisible disability.'
Think that one day, it might be you that someone is judging wrongly. Think how that would make YOU feel.

Monday, 10 June 2013

Yes, I detest autism sometimes. So sue me!

Autism. It's an integral part of the people who have it. But it's not all of them. They are not only autism.

So why is it so frowned upon for us parents living with autism, to sometimes feel and, heaven forbid, say out loud, that sometimes, we hate autism??
I have read a couple of excellent blogs on this subject  recently so I thought I would get my tuppence worth in.

About 70% of the time, autism and I get along just fine. It's there and I am acutely aware of it, it's a bit noisier and messier than I'd like it to be and it doesn't understand as much as I would like it to, but that's fine, we can work on that. It belongs in our house, with our child and we make it welcome, we embrace it, we accept it as part of Caidan's and our lives. We work with it and we notice all the small and huge steps forward it takes and we celebrate every one!
However, that leaves 30%. Yes, about 30% of the time, I hate autism. I detest it with a passion. I wish it would leave our house and never come back. Those times when my son is in meltdown, kicking, hitting, screaming, hurting himself and unable to tell me why. I detest autism at those times. Those times when he wants to do something, like take his own jacket off and he can't, which gets him upset and frustrated. I detest autism at those times. Those times when he can't join in with other kids even though it is obvious he wants to, but he just doesn't know how to do it, and he gets frustrated and angry. I detest autism at those times. Those times when he is ill but he is unable to tell me what hurts or what is making him feel unwell, which gets him frustrated and angry and upset. I detest autism at those times. All of those times, I am unable to perform my primary function as a mother and help my child. Mainly because he either doesn't want me to or I don't know how to. That makes me detest autism too.

But let me make this clear. I detest AUTISM at those times. I do NOT detest my son. My son is so much more than just autism. It is not all he is. But it is autism that is making those times so hard for him.
No one would judge me if I said I hate my NT daughter's temper. They wouldn't think that meant I hate my daughter. But her temper is just a facet of her personality in the same way as autism is a facet of my son's.
So why shouldn't I detest autism sometimes?? Would you not detest something that makes your child frustrated and angry and upset, regularly?
Don't get me wrong, autism can be amazing and wonderful and downright awe inspiring, but it can also be painful, heartbreaking and isolating. I am blessed and truly thankful that it is 'only' autism Caidan has and that he does not have a life threatening illness, and for the most part, we are hugely positive about his autism, we embrace it, we want him to embrace it and to be proud of who he is, and we accept it. 100%. But that doesn't mean we have to love it all the time. Autism is not all rainbows and butterflies. Sometimes, autism sucks. It sucks big time. It can involve physical pain, both for Caidan and for us. It is horrible and heartbreaking to have to stand by and watch your child having a meltdown, not being able to help him or calm him, watching him kick, hit, scream and hitting his head. Most times, my husband and I still cry when it is over. It is the most helpless we have ever felt as parents. Plus, we have most likely been kicked and punched and we are hurting, both physically and emotionally.

So tell me, am I supposed to do anything else other than love my son and detest autism for what it does to him at those times? Because if I am, then I have failed as a mum.

Thursday, 6 June 2013

Worry? Of course I do, I'm a mum!

Worrying. We all do it, all us mums. It's a major part of being a mum. Those of us with children with autism or other special needs, well, we live on a constant merry-go round of worry, don't we? We worry about the future and what it might hold for our children, we worry about if they are ok at nursery or school, we worry about whether they will ever stop hitting and lashing out, we worry about whether our planned trip to Tesco will result in a meltdown (and that's just from us, never mind the kiddos!! ) We just worry about them, constantly. NT children bring their own set of worries too, obviously. Entirely different ones for the most part, but worries all the same.

I have 2 children, Caidan is my almost 4 year old, handsome, amazing son who happens to have autism. Kirsty is my beautiful, intelligent and funny 17 year old daughter who is NT. Funny thing is, it's the latter who is causing me most  of my worry at the moment. Not for any bad reasons, she is an amazing girl and I am so proud of her. But there are good reasons for my worrying about her right now.

First off, yesterday, Kirsty passed her driving test. For those of you who have been there with your children, you will understand my worry!! Knowing she is out there driving and I can't protect her from the idiots on the road that should never have gotten a licence in the first place is really hard to take!! I am not worried about her driving, my husband assures me she is a very good and careful yet confident driver. But I can't control the others on the road, can I, so I have all these daft scenarios in my head involving police showing up at the door......I know these will fade in time but I can't help the worry at the moment!!
Then on Tuesday, she goes abroad to Magaluf for 2 weeks! All her school year are going (well, they have all officially left school now, which is what they are celebrating) and it will be a great experience for her. She has worked so hard this year, she deserves the break. But I am going to be a quivering wreck, drooling in the corner by the time she gets home!!
Then there is the worry of whether she will get the last exam pass she needs to get into her chosen University course. What if she doesn't? Is she going to be devastated? Will she just shrug her shoulders and find another course?? I don't know.
What I do know is that all these things are totally outwith my control, hence the worry!! It's a mum's instinct to protect her children and in circumstances where you just can't, well, I don't know about you, but it fills me with dread!! It's not about controlling her, I don't want or need to do that, but I have no control over protecting her. It makes me feel like I am failing her as a mum, which is really stupid, I know that, but it does!!

I doubt the worrying is going to stop anytime soon, if it ever will!! As I said to her, it doesn't matter how old she gets, she will ALWAYS be my baby girl and I will ALWAYS worry about her.
I am a mum, it's in my job description.

Yet despite all the worry involved, being a mum is the best thing I ever did, by a country mile. I am so proud of both my children. I am a very lucky lady. If not a huge, big worry wort!

Sunday, 2 June 2013

Middle aged?? When does it happen?

I am contemplating a birthday in the next 4 months that will finally see me nearer 50 years of age than 40. It got me wondering (those who know me are now facepalming themselves!) but yes, it got me wondering, when exactly do you become 'middle aged?'

It seems to me there are 3 categories of age. Young, middle aged and elderly. So when do we cross from one into the next? Is there some sort of transition period where you dip your toe in the water so to speak? 5 years grace before you fully graduate from one to the next? Or do you just wake up one morning having shifted from one to the other? If we go by the old 'three score and ten' adage, then middle age must begin at 35 years old? But it doesn't does it? So when then?

What about a dress code? Is there one? When you are in the 'young' category, you can wear whatever you like, no one thinks you are too old to be dressed in mini skirts or leather trousers (does anyone wear leather trousers these days?)  But when we graduate into middle age, are we supposed to have some sort of uniform? Are leggings or jeans the acceptable way to dress? What about when we become elderly? Are we all to run/hobble out to buy crimplene trousers and sensible shoes and stock up on rainmates? Do we book in straight away for our blue rinse or can we wait a while?
All these questions running through my mind, but the main one being 'Am I actually now middle aged?'  Do young girls in their 20's look at me in my denim mini and leggings and boots and think 'Why is that middle aged codger wearing youngsters clothes?'  Do other people look at us 40 somethings and consider us middle aged?
I know when I was in my teens, I would have considered a 40 something as middle aged, but things have changed have they not? Apparently 40 is the new 30 and 50 is the new 40 etc. So has the cut off for middle age shifted as well? Are we looking at people in their 60's now and considering them middle aged instead of elderly? I look at my mum, who is 70, and I don't see an elderly woman. I see my mum, who has very few wrinkles and dresses in nice, modern yet tasteful clothes. So is 70 no longer elderly?

There is the train of thought of course that it is an individual thing. Some people look older than others of the same age, they dress older, they have older hairstyles. Perhaps it's how you look that determines when middle age begins?  I just have no answer to my question.
What I do know though, is that I don't consider myself middle aged. I don't consider myself young either. I suppose I consider myself as a 40 something mum of 2 who is comfortable being the age she is and who dresses how she wants to, has her hair how she likes it and wears make up because she feels better with it on.

So I say 'Middle age? Move along, nothing to see here.'

What do you think? How do you feel about what determines middle age? Or perhaps you think these stereotypes no longer exist? I'd love to know your thoughts, so let me know in the comments.

I look forward to reading!