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

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?