What would you do...

Like a relentless nagging whining child, a question keeps running through my head in the style of the National Lottery advertising campaign where we were asked what we would do for a few million euro. Only its not money that my inner advertising guru is asking about.  Its a chugging whirring demand to know if I would tightrope across the Grand Canyon, or go swimming with great white sharks wearing Lady Gaga designed swimwear, or something equally ridiculous that my mind thinks of but the end prize would be to have five minutes more.  "What would you do for just five minutes more..."

I would give pretty much anything or do anything to have a few more minutes to tell my Mum again that I love her.  To hold her hand and kiss her and hear her voice just one more time. I miss her more than words can say and would love to turn the clock back and cherish the moments that I once took for granted. I can't though and no amount of ruminating and wishing will change that.  

Before Mum passed away, I told her that we would all be ok. She had been delighted that I was finally moving back up to Dublin with Munchkin and as a family we would all be nearby for each other after she was gone, to support each other in sad and trying times and to celebrate and cherish happier times too.  All the changes are terrifying but when I get scared or overwhelmed with what needs to be done, I can almost hear her voice telling me that its all going to be fine and to stop worrying. All I can do is to honour my promise to her to try to live life and enjoy it and to encourage the kids to do the same. To stop dwelling on the negative and instead of looking at what we don't have, to be happy about all that is good in our lives. I once asked her if she was not bitter and angry that she had become ill despite the fact she didn't smoke, rarely drank, exercised and took great care with her nutrition.  To me it all seemed grossly unfair that she got this rare bone marrow disorder when she was so careful with her health. I asked did she not keep asking "why me??" and she told me that she did ask that for a while until one day the answer came to her when a voice in her thoughts replied "Why NOT me??"  Said it took the bitter sting out of the tail of her anger. She told me that bad things can't always happen to "other people" and that you have to just pick yourself up and get on with the cards you've been dealt.  I didn't appreciate how positive she actually was until she was gone, nor realise just how many lives she had touched and influenced until I could see the church filled to capacity with faces I'd long forgotten.  She never forgot a face though and was an amazing people person, treating everyone equally.  Whether you were a member of the cleaning staff at the hospital, or a consultant, you were all part of the intricate network of my mothers life. She made a point to talk to people and was genuinely interested in what they had to say.  I struggle maintaining personal relationships and friendships as I've previously blogged about, but it came naturally to her.  I'd love to be more like her though and am going to try really hard until its less difficult. I'm determined to work hard with Munchkin too as know its something that doesn't come easy to her either.  September heralds the start of a new chapter in our lives when we move up to Dublin and she starts her new school.  I can hear Mum telling me to "start as we mean to go on" so its time to stand tall and think of the challenges ahead in a positive manner and embrace the changes, whatever they may bring. To draw strength from the woman who fought a brave battle against interminable odds with courage and dignity, right to the very end.  

I know you loved this piece of writing and I will try my best to follow the words of it.  But can you come visit me in my dreams and talk to me... just for five minutes more?  Love you to the Moon and Back Mum xxx

If you fall over and break a leg, don't come running to me!

In a  very Irish manner and like most Irish mammies I find it difficult to emulate empathy.  If you fall and hurt yourself, I will first look to find blame with you and see why you were stupid to let it happen, and then perhaps  comfort you... As much as I want to be one of those fluffy parental figures who comfort without logic, I cannot be that person.  I WILL  seek to blame first and comfort later. It doesn't mean I love you less though, please believe that. I suffer from "Bob the Builder" syndrome and have an insatiable need to be liked and fix peoples problems which means that if there is something that I can give you or do,  I will speak first, act next, and if I don't know the answer to your problem, pretend I know an answer which can give the impression that I'm a know it all jackass. A few times I was referred to as "The Oracle"  and that boosted my self esteem no bounds. I'm no Oracle though, just a girl who knows how to google...

Looking Back to Move Forward

I'm struggling.  Finding things very difficult the last six months or so.  Not because of the kids or anyone else, just fighting my own demons and trying to keep the Dark Dog from the door. I've done an incredible amount of navel gazing trying to figure out and come to terms with who I am and why I am the way I am in an attempt to feel ok and have hurt people in the process, letting them feel that they are in part to blame for who I am today.  Wounds have been opened and words said that can never be taken back or the hurt eased and that saddens me greatly as I truly don't believe any person is responsible for my depression.  Well one person perhaps and I have to look in a mirror to see her.

I was always considered a very easy going child. No trouble, loved by all who met me.  If you look at my school reports I was described as a day dreamer who needed to apply herself more as was capable of doing better. There was never much effort to drift through academically as it came easy enough without too much effort. In other words, I was an intelligent quiet little girl who had a tendency to daydream. Musically I was naturally talented but lacked the desire to progress much to my teachers disgust and  flitted from one instrument to another but never stuck with any long enough to master it.  Huge potential and could learn anything that was put in front of me but without the desire to do so.  Very capable student... needs to apply herself more. Story of my life really.

When the transition to secondary school came I was given the best opportunities available and put into a private school.  I have to admit I found it daunting and had huge difficulties fitting in and making friends so became a little bit of a loner. I became an easy target for the school bullies. I don't think that it was the buck teeth, the railway track braces or the plastic framed glasses that made me stand out but more my disposition and the pack could sense vulnerability. I didn't fight back nor stand up to them and won't go into great detail but it reinforced my sense of not belonging or not feeling right. Hindsight is a wonderful thing but I still ask was I bullied because I was different or did I become different because I was bullied?  Its a chicken and egg question, one I'm not sure has an answer. By the time third year came I snapped and fought back and discovered that if you pretended to be confident or brash you were left alone.  It isn't easy to admit then that I stood back and watched another girl be mercilessly bullied and never stood up for her.  She's often in my thoughts though and have heard she's married and has a family and doing well now.

From an early age I learned to pretend.  A coping mechanism that has left me now wondering at 43 years of age who I really am?  I've spent my life pretending and I'm tired, waiting to be caught out as a fraud is exhausting. Is it something we all do though? Most people who know me would describe me as a confident funny person who can be witty.  They're the people who know me through social media and see the person I've portrayed and want them to see... My family would describe me as hard work.  Difficult to get close to with a penchant for drama. I do attract drama into my life actually and most would find it hard to believe the things that have happened to me are true but if I were to write it all down many would think it belonged in the fiction aisle.  I think I attract the odd and the dramatic though as I invite it into my life.  The realisation that I find it difficult to feel emotions unless they're very strong, either upsetting or happy helps me to understand why I attract those situations in life that others seem to be able to avoid.  A willingness and desire to believe what others tell me too often leaves me open to people exaggerating or filling me full of lies.  I hate lies and liars intensely.  Doesn't matter what the content of the lie is just the fact its not true fills me with a sick feeling in my stomach. Paranoia and distrust follow these penny dropping moments. I digress though...

So what am I trying to achieve with this post.  I guess its a bit like coming out of the closet.  I'm not ok, and not sure if I ever was. like many others who suffer depression and other mental illnesses, you spend a huge amount of time trying to deny your own feelings as the world tells you to pull yourself together or its not alright to feel like that.  Well I've decided it is ok to not feel ok and my feelings are my own and as valid as everyone elses. Perhaps the kids didn't lick their issues off just one stone?  Its dawned on me recently that I'm feeling very lonely but that that doesn't marry well with the fact that I really am not that comfortable or sure I like people either. There, I said it. Its easier to have 100 superficial friendships where people don't know you well than have one friend that knows you, ugly side and all.  Its not that I don't want friends, I just don't know how to be one and let people know the real me. Perhaps its a deep rooted fear of rejection or a lack of sense of self that was always there rather than something that was ever caused as such.  All I know is that I want to feel connected and stop running but finding middle ground is hard.  I love my family but I haven't let them in or get close to me and I hope they know its not that I won't, I just haven't been able to. I accept that I've been difficult and hope they love me enough to forgive me that and accept me for who I am, warts and all.  In return I promise to try hard to be me, whoever that is xxx

Pick Your Battles

Has it really been a year since I last blogged?  I guess so...

So what has dragged me out of hibernation and compelled me to put my thoughts on virtual paper tonight?  Fighting.  Virtual, cyber, internet bullying and scrapping. Thats what. I have previously waxed lyrical about the importance of social networking here, here,  here and  here etc....  Yes its important and I still think its the best thing since Messrs Johnston Mooney & O'Brien took a knife to a loaf and packaged it but its not the bee all and end all of your World.  Or at least it shouln't be...

Over the last twelve months or so I have tried to pull back a little from spending so much time online. Yes, I still check Facebook at least ten times a day (mainly while I wait for the lights to change shussshhhh) but the days of having to trawl back through every post or check every friends page in case I "missed" something has long gone thankfully. You see, spending all your available time online has a major drawback. You spend less and less time with the people who matter most in your life, your family, your children and your flesh and blood friends.  Unfortunately though, its a bit like an addiction isn't it?  You think you'll miss out or not see something if you aren't online.  While you're facebooking/tweeting/emailing/texting though, what are you missing going on right behind you in your kitchen/living room/playcentre/park/beach?  (Yeah with iphones we log on everywhere)  Don't get me wrong, I'm not saying don't have a cyber life as most of us know how very isolating and lonely it can be being a SN parent, our online friends are our support network, but just have a look at your usage and how its impacting your life...  How many of us have been "busy" when our kids are trying to involve us in something, or look over and thank the "Silver Lining of ASD" that our little one plays happily by themselves so that we can read what someone has posted or offer a reply of support etc.  Makes you think eh?  The irony hasn't escaped me that my gorgeous daughter is playing with her Moshi Monster cards while I type this either.  Yes, I'm guilty.  As she doesn't go to sleep til gone midnight though I'm going to write my words down before sleep deprivation removes them once again from my addled mind.

Ok so back to fisticuffs on the internet...  What am I talking about?  People slagging off children with disabilities, specifically Autism. Yep Autism is the A word. We've had the N word, the R word and other lettered words that have provoked great reactions from the public in the past (and present) but the current one appears to be to insult a person by calling them autistic.  We saw in the last few days outrage over 50 Cents tweets in response to a person where he told them "just saw your picture fool, you look autistic". Yep this was in response to being told to release the album or be shot again. I get he was angry and that was the insult he used to reply. Instead of apologising he compounded it by saying "don't want no special ed kids on my timeline follow somebody else".  Nice going "Mr Cent".  Way to alienate and fuel a generation of ignorant uneducated kids (I'm referring to some of his fans not children on the spectrum by the way) to think that people with Autism or any Special Needs are "lesser".  Not cool at all dude.  Hey, there is outrage though and gigs are being cancelled and Fiddy will learn the error of his ways through his pocket. Deservedly so.  Social networking and people power at its best.

Then you have the Facebook Pages... The hate pages, the rant pages and while they are disgusting at best, we go after them with the same tenacity as we do the likes of a public persona.  Where admonishing and boycotting and blogging about the likes of Fiddy will hit him in the pocket, reacting to these hate pages does the exact opposite.  It FEEDS them.  Do you think that for a split second, some spotty arsed 16 year old lad looking for attention behind the anonymity of a computer screen is taking in anything you write in rebuttal of some vile comment they have posted?  I see parent after parent pour their hearts out talking about their beautiful kids trying to change the opinion of the poster.  Its not going to work though. You can't educate pork as they say. They posted it to get a reaction and they're getting exactly what they want.  You may get one page taken down at a time, but twenty more vile b*stards are rubbing their hands thinking "wow, using autism really gets a response, what page can I create now to p!ss them off and wind things up".  In an attempt to stop one page, its creating a snowball effect.  In an attempt to protect our kids and change the World they live in, we are actually making it worse. I might not be popular for saying that but its my opinion. My advice is if you come across one of these pages, report it but don't engage with them. Put them on extinction as such. We need to pick our battles not go looking for more to fight.  Haven't we enough to be fighting when it comes to services, entitlements etc?  Walk away from the Internet Trolls, seriously.

I see the same people online every time I check in.  Gearing up to fight the World and "make things better" for our kids. That's noble, but in spending all day fighting invisible people who frankly our kids will never know in real life, it would appear we've lost sight of making the World our children live in, actually live in, better.  Seriously, whether you hate me for my opinion or not, I really don't care.  I'm speaking up for our kids who want their Mom/Dad/Sister/Brother/Friend to get off the damn computer from time to time and just sit with them and watch tv,  or play with them, or just be a physical presence beside them.  Don't look back and regret time lost. And yes, I'll probably see you over on Facebook later but right now, I'm going to read books with Munchkin

xxx

My name is Petunia and I am a...

I'm thinking of joining AA... no, not Alcoholics Anonymous but Apple Anonymous! At last count in this house we had three iPhones, an iTouch and the latest addition to our family is the iPad. We love our technology in this household and if it was a choice of buying new clothes (I hate clothes shopping) or even buying nice food, a new gadget will win hands down EVERY time! They are not cheap by any means but I'd stake that anyone who has one of these iOS will understand exactly where I'm coming from. Thankfully, now that most mobile operators are supplying them, its easy enough to get your hands on a free phone these days and just watch your usage to keep the cost of your monthly bill down.

I'm sure there are doubters out there though that still believe that giving your child a piece of technology is akin to an electronic babysitter. Where sitting your child in front of a tv for hours a day watching cartoons isn't going to be hugely beneficial to them, there are huge advantages to having a device such as an iTouch. Munchkin has been using the apps on my phone for a couple of years now and I marvel at the ease she uses them. When we started, we used ABA Flashcards from Kindergarten as they were free for World Autism Day a couple of years ago (and incidentally are still free now) and wherever we were, she had access to them. Could you imagine lumping around boxes of cards to work while you're waiting for appointments? Eh no. There are some fantastic applications out there which are autism/speech delay specific. One that I saw grow from an idea to an award winning one is of course Grace App. A fantastic communication app that helps not only children with Autism, but any child/adult with speech delay. There are countless numbers of people using this app now in place of or in conjunction with PECS. Once again, which is easier to carry around for portability? A large bulky folder full of laminated and velcroed pictures, or a device that any child would be seen carrying?

I could go on and on about the vast quantity of quality applications that are both fun and educational for the child to use but we'll be here all year... I have over 100 books stored on our devices for Munchkin to have at her fingertips. I "attended" an App Party on Facebook recently where developers gave away apps or discounted them heavily so we have dozens of fabulous educational apps now loaded up and ready to use. A special mention to two iPad apps that Munchkin loves now has to go to "How are You?" which is an interactive, brightly colourful book app that teaches about feelings and emotions through their stories, and "Dexteria", a wonderful app that was developed by occupational therapists and helps improve fine motor skills through, tapping, pinching and the more advanced "write it" part of the program.

On a social level, giving your child an iOS is not going to stop them interacting with other children. Look at any child with one in their hand and there's usually another one looking at what they're doing, sharing in the experience and comparing what they have on their own device. It gives them a common interest that they can talk about. Of course they're going to play games on it to but hey, that's helping hand-eye coordination right?

If you do decide to take the plunge and get one of these iOS, some advice I would give you is to get a good protective cover! Munchkin has broken her screen twice on the iTouch but thanks to product replacement cover have managed to get new ones. My friend Lisa recommended the Otterbox Covers as has extensive experience with kids dropping or throwing the phones when she brings them into schools to train with Grace App. She recently had a stand at the Autism Show in London and demonstrated frequently how well the covers work by throwing her own phone on the ground. I now have an Otterbox Reflex cover on my new phone and my iPad now sports a very robust Defender case. Both incidentally have hit the ground since and survived to tell the tale so I'm happy (no I didn't test them Lisas way, Munchkin dropped them!)

From both sides of the fence... I'm Angry

I woke up this morning feeling like two of the Seven Dwarfs... a little bit Dopey due to the confusion as to why our Government has let the most vulnerable in our society down, but more Angry (I'm using creative licence here... Angry/Grumpy right?) at the state of affairs that was highlighted in Primetime Investigates last night. For those who haven't seen the program, watch it here and be prepared to cry and get angry too. If there was a dwarf called "Lucky" I would consider myself that one too.

I'm one of the lucky ones, my children don't have the extensive care needs that others I have met and know over the last few years have. I'm lucky that my little girl has progressed and will go to mainstream this September. I'm lucky that I have good friends and family that have supported me along this journey. I feel sick to the stomach that I've bemoaned my lot when seeing what others have to deal with on a daily basis due to the chronic neglect from our powers that be. I'm lucky and very thankful that I've been equipped and able to provide my child with services that were never forthcoming. Others are not so fortunate.

I recently contacted my Autism Liaison Nurse for help. I haven't pushed for assistance up to now as was fobbed off with the "cutbacks" line but being a single parent and having to go into hospital for a week for a hysterectomy, I felt it wasn't a want help situation but a need help one. The line I was given was that to give me help, others that need it more would suffer as they'd have their hours cut as there was nothing in the budget left. I was angry and wrote a letter to the ALN and her superiors asking for a response in writing. That was over two weeks ago and guess what... no response. After watching the program last night, it made me cry that its people like this that they are suggesting taking hours from.

I provide home support myself as work for the HSE (Health Service Executive) and although I've given them ample notice of the three months I need to take off after the operation, they will not be replacing me while I'm off recovering, the family I work with will lose the hours I provide until I return in September. This disgusts, worries and upsets me and has left me feeling that I personally have let them down. I know many carers and health care attendants that harbour this feeling of frustration and upset at letting their clients down when in fact its the pen pushers and management of our health services that should be hanging their heads in shame, not us. Its impossible not to feel responsible though when you see the family you work with run themselves ragged caring 24 hours a day for their children, with minimal support that they have had to beg and fight for. Who is going to care for the carer when they have physically and emotionally burnt out?

Guidelines were passed down recently to all HCAs working with children denoting the new regulations... For years we have not been allowed to drive the children we work with, we are not allowed to feed them if they're peg fed (highly unworkable as if the parent is in another county at hospital with another of the children what do you do? Let them starve to make sure the HSE isn't legally responsible? eh no...) The newest regulation is that any HCA working with a minor cannot be left alone with them and its up to the parent to ensure that another adult is present at all times with the carer. It defeats the purpose of respite and support if the parent has to remain while you work. If there was a family member or other adult that could be present, there wouldn't be the need for the HCA there... Is this what the pen pushers are aiming for? If there is a non HSE adult available to be there the next question for the parent will by why do they need support if they have someone who can come in? Can hear the axe swinging as I type this...

Between cutbacks in community care and our health service, and caps on resource hours and Special Needs Assistants (SNA) in schools, what future are our children facing. Can our new Government do the math and add up what its going to cost down the line by hacking away at the supports and services now? I really hope so.

Grieving? But no-one died?

I recently did studies on the grief process and the different stages involved as part of my course and got to thinking how applicable this process is when you get a diagnosis of autism in the family. Although its not a death that you're dealing with, you still go through the stages as the future and plans you had have changed for you and your child. There are five stages in this process, Denial, Anger, Bargaining, Depression and Acceptance. If you are lucky like me, you get to the acceptance part in a reasonable time limit but you do still find yourself dipping in and out of the other stages on occasion...

Denial

Oh how well I remember this stage... the one where it was easier to bury my head in the sand in the hope that I was wrong. Sure she's young, she might grow out of it. I'm wrong, there isn't a problem, its all in my head. You stay here for a while in the hope that it will go away, the signs and flags are waving but you choose to ignore them for a while until the moment that the "penny drops" and your world starts crashing in on you!

Anger

Why my child. This happens to other people! When did I become one of them?!? This is so unfair that my beautiful little girl has to deal with these challenges. You become angry and frustrated that it happened to you and your family instead of Joe Bloggs down the road. Then it hits you that you always pitied the "other people" and get angry that you don't want to be patronised or pitied although you yourself have been guilty of the very same actions in the past. You get overwhelmed with the why me's until the answer hits you.... Why NOT me? This was something my mother taught me when she became ill and I wanted to know why she wasn't angry that she'd been dealt a duff hand although she'd lived a healthy and clean life. It was when she answered "why not me?" that I realised the wonderful lesson she was teaching me. Things can't always happen to "other people"...

Bargaining

We start looking for cures, for answers. If I do XYZ it will "fix" my child. We look for the magic bullet that will restore all our hopes and dreams. We hear what we have to do to help our child to improve their communication, their quality of life and we do anything possible to do it. ABA, OT, SALT, Social Stories, Schedules, diet, supplements etc. How many autie parents do we hear state that they'd sell their houses and bankrupt themselves in the pursuit of the latest therapy available. Unfortunately there are sharks out there that take advantage of parents at this stage promising that the latest "batshit therapy" is the "cure"... Swimming with dolphins is something that whilst a wonderful experience, it's not going to miraculously start your child talking in full sentences.

Depression

Hanging upside down for 3 hours a day, drinking the dew from buttercups hasn't fixed the problem. You realise that its going to be a long slog and damn hard work. Your life becomes a ritual of appointments, reports, letters and fighting for services for your child that will work. Its easy to lose sight of your own needs and let them slide. Unfortunately, getting run down and tired has its own pitfalls. One of these is the "Black Dog" of depression. You want to retreat into your cave and hide for a while until someone who cares for you and supports you drags you back out. Don't be afraid to talk to your GP. Sometimes we all need a bit of help in the shape of a little round pill, its nothing to be ashamed of. While medicinal help is good to deal with your depression short term, its getting a support network established and in place whether a local group or an online group that's vital. Having others who understand and "get it" will help drag you from the cave that which seems attractive but is so debilitating in the long run. Ask for help...

Acceptance

Ok, so life isn't going to be the same as you thought it was going to be. Let go of the old dreams and create new realistic ones. Whats important is not your dreams but your childs dreams. There are plenty of successful, entrepreneurial people out there living life with autism. Many many autists go to college, have successful careers, get married and have children of their own. Don't look too far into the future as it's impossible to tell right now what capabilities and strengths your child will have 20 years into the future! Embrace and enjoy their current strengths and capabilities and stop looking at what they can't do... look at what they can. Acceptance is the greatest gift you can give your child. Different doesn't mean wrong, just not the same. Don't let anyone make you feel that way.

I've found over the past two years that as Munchkin has moved about on the spectrum (and they do, you're not stuck at the same stage always as the day you get your diagnosis!) I have moved about between the different stages of grief. Acceptance is great when you get there, but you will have days when new challenges arise that you'll slip back a few stages or dwell in bargaining or depression a little while. Thing is to keep moving back towards acceptance and getting on with your lives. I know its easy for me to say this as Munchkin has made such amazing progress but that in itself can put you back to the denial stage until autism shows its face again and you need to pull yourself through the different stages. I guess they don't call it a rollercoaster of emotion for nothing eh?