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

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?

A letter to my daughter

My darling Munchkin,

As I lay with you in my arms tonight holding you tight as you needed your "huggles", I delighted in the feel of my arms wrapped tightly around you. I looked at your angelic little face and drifted back to a time when I wasn't so blessed to be able to touch you...

When you were born, you were not content in my arms. Where I saw other mothers feeding their babies and watched them bond, I wondered why it was that you were so uncomfortable in my arms. I so desperately craved you to look up in my eyes as you fed and feel that connection that others seemed to find so easily. No matter what way I positioned you, there was never that ease as you strained away from my touch...

As you got older, the only way you were "comfortable" on my knee was to be facing away from me. As soon as you had finished the last drop of your bottle you slid off my knee like I'd electrocuted you. I was envious of the other mothers stories of how their babies would reach out and touch their faces and plant sloppy kisses on their mouths. I can admit now how jealous I was of that which others took for granted. I took comfort that you wanted to sleep in my bed with my arm across your chest even though you wouldn't let me put my hand on you. I know now that you were seeking the pressure the weight of my arm gave you but it was something that I valued greatly.

I remember reading a quote just after the penny dropped when I realised you had autism. I burst out crying as it touched home to me. It was from Helen Keller and it read "Love is like a beautiful flower which I may not touch, but whose fragrance makes the garden a place of delight just the same." I decided though that I needed to be able to touch you, I wanted to be able to touch you...

I spent countless hours with you sitting sideways on my stomach on the sofa, reading you book after book as you loved being read to. Slowly you grew to accept this as long as I wasn't trying to hold you there. I tried everything to desensitize you to the feel of my hands. As you watched your beloved Peppa Pig, I used the opportunity to stroke your feet briefly or to massage your arms. It took time but you got used to this routine and grew to like it. Every morning for half an hour before we got up, we would play the "name the animal game" and every time you did the sound I would tickle you for a brief second or two.

Holding your hand wasn't accepted by you at all. This made going out in public very difficult as you would pull away and then run to get away from me. We ended up only going out in the buggy as it was the only safe way to have you out. With the help of your tutors and the occupational therapist we worked tirelessly on getting you to put pressure on your tiny hands, rolling you over back and forth on your gym ball, making you "walk" forward on your hands to get your jigsaw pieces. We played so many games that involved touching that you didn't realise what we were doing, you just enjoyed the "game".

That almost seems like a lifetime ago now. Every time you put your hand in mine, or give me a hug and a kiss my heart feels like it will burst with happiness. You have no idea of the joy you bring to me my baby. These days you love for me to tickle your back, you give me amazing huggles ( your name for hugs/cuddles) and actively seek out contact with me. I love these moments and will never take them for granted I promise. To see you hold your friends hands makes my heart swell...

I do wish that you would let others hug you or give you a kiss though. It would make your grandparents very happy to get a big squeezy hug but the little ones you do give when asked are the small steps towards this goal. I'll be selfish and say that if you never have the ease of contact with another the way you do with me, I'll still be happy.

Thank you

Mom xxx

The Importance of Understanding

I got a full nights sleep!!!  Its amazing how much better and brighter the day is when you get a straight eight hours sleep with no interruptions, no little feet dancing in the bed, no elbows or extra limbs (you know our kiddies grow an extra set of legs and arms when the lights go out... well it feels that way when you are getting the autie or aspie version of Riverdance on your back or head during the wee hours!)

I had become increasingly frustrated lately as every time Munchkin slept in her dads house, he would report that she had no problems sleeping and made me question even more my own parenting skills.  I wondered it if was the double bed she gets to sleep in that helped her settle well there. Or the fact that he marches her up mountains and they are constantly on the go when she's there so was tired out.  I racked my brains and though that if I did the same, she may sleep here.  I dragged her to the beach, the forest, marathon trampoline sessions or if it rained, the bed in the spare room had its strength seriously tested.  But no, like every other night, she resisted sleep til gone midnight.  Things marginally improved after I was given a prescription for Melatonin from the paediatrician during her review and I could get her to bed 9.30ish each night but she never stayed asleep.

It was only after her recent OT assessment that it was explained to me that Munchkin wasn't actually kicking me or hitting me but sensory seeking by pressing her feet and limbs up against me.  Its very common with kids with proprioceptive problems.  She constantly seeks input to gauge her position by pressing up against me over and over during the night. Once I knew why she did this, it actually didn't bother me as much anymore.  Its amazing what a dash of understanding can add to the mix!  She used to only sleep as a baby if my arm was across her chest (not my hand, just my forearm) and the OT recommended that I use a weighted blanket in the report I received the other day.  It was only then that things fell into place regarding her sleeping pattern at her dads.  While explaining the report to him, he informed me that he uses two duvets and a blanket at his house as he didn't want her to be cold and he couldn't afford to use the heating.  She was getting the equivalent of a weighted blanket while there!  With this new information, I set to work that night.  I got a heavier duvet and stuffed it into her single cover. I put a bed rail up, as the OT explained that even though she doesn't fall out of bed, she would be subconsciously checking her proximity to the edge.  I put her to bed and waited for the magic to happen....

3am and there is screeching at the stairgate in her room... I go to the room to see that she has stripped off earlier in the night as dirtied her nappy and got back into bed.  She's then wet the bed so that was the end of that attempt!  I had thought we'd got past the stripping off in bed stage but will have to break out the Houdini suits again.

Last night we tried again.  On of the facebook mums suggested a duvet under her also so I set up the bed.  One duvet under her, a feather and down pillow and a doubled up duvet on top of her. She's in her Houdini suit so we're good to go.  4 mg Melatonin and some milk and lets see what happened.  I sneaked back up ten minutes later to check on her and.......

She may be holding onto the wall and rail but she looks so snug in her cocoon!  And yes, amazingly, she stayed there all night :D   I have fingers, toes and eyes crossed that it continues to work as I feel like a different person today.  If not, I may have to reconsider the duct tape and staples solution... (relax, I'm only joking so take your finger off the speed dial to the social workers hehe)

Look, I DO fit in :)

A few days ago, myself and the tutor lauged so much as Munchkin squeezed herself into a canvas shopping bag.  It never ceases to amaze me where she'll manage to make herself fit.  From a very early age, she would climb into strange places.  You would find her sitting in a toybox or drawer looking at her toys rather than take them out to play.

When we visited a friends house, she would open the dresser and pull out all the contents from the bottom shelf and then slide into the press and happily lie there for a while while I had a coffee.  My friend kindly removed all breakables from this dresser as it became a weekly event!  In my mothers house, there is a press in the kitchen which she likes to sit in with the doors closed over at times.

I never paid much heed to this little quirk of hers until talking to the Occupational Therapist.  It seems that she gets some needs met on a sensory level by doing this.  A lot of children on the autism spectrum have proprioceptive difficulties.  Hammie described this in a post on the IAA blog here as "The sense of knowing where you are in relation to the Earth" and gives a very simple example of if we close our eyes, we can still touch our nose with our finger.  I still remember seeing Munchkin tryin to eat chips with her eyes shut one day and more that a few nearly went up a nostril!

As part of her OT program, I do deep pressure and massage with her.  One of her favourite things is to be rolled up in the duvet and squashed.  She loves lying on a beanbag and being squashed with the other beanbag.  She loves the pressure that is exerted on her little body and recently squeezed herself into a pillowcase so that her big sister could swing her gently while in her "cocoon".  As she gets bigger we'll have to either get a body sock or a single duvet cover at the very least!

I find that she has difficulty realising what size she is in relation to items also and will get quite frustrated at times that she can't fit into the toy car/bed/box she's playing with.  As small as she is, there are certain limitations as to what she can actually fit into!  It doesn't stop her trying however hehe...

I'll leave you with one of my favoure photos I took when I found that she had emptied the toys out of her shelving unit to use as a ladder to climb into and have some chill out time....

*edited to add video under strict instructions of the Queen of  Blog, Hammie!