A Rose by Any Other Name...

I'm struggling a lot lately, having to keep explaining the need for labels for my children. Its got to the point where I'm almost starting to believe the people who think I'm looking for things to be wrong, almost "wanting" there to be something there so I can slap a label on my child... It couldn't be further from the truth though. Of course I don't want there to be any reason for my child to be diagnosed with anything else, but in my heart I know that we haven't got to the bottom of my middle child's issues. Therefore, I will don my elephant hide and get her the private help she needs and if that gets her an additional label to wear, so be it.



Trying to explain the need for a label is exhausting. A simple analogy I use is that you have a cupboard full of cans, all with the labels missing. You try to figure out whats in there perhaps by seeing how heavy it is, does it slosh when its shaken, or is it solid. You can really only find out a tiny bit about the contents of that aluminium can without its label... Now stick a label on the can. Whats changed? The can is the same, the contents haven't changed one iota. All that has changed is now we can easily identify what is inside that can without the need to guess or shake it.

So that is the purpose of the label. To identify what is there. Its not a name, or a tattoo that has to be worn on the forehead of your child, but it is essential to get services and the help your child needs and deserves. Don't forget also that labels peel off and can be changed as appropriate if things change.

So where is the real issue that some have with the label? I feel its the stigma of old. Sure don't people label themselves all the time if its something they are proud of? MD, BA, Mrs, Sir, Lord.... So why not come out and say the real reason they don't like certain labels. Yeah, its the stigma, I don't want people knowing there is any mental illness/neurological disorders/disability (delete as appropriate) in our family... Ignoring and shunning the label however, won't change that or make the child neurotypical. It will just deny them services and help.

Munchkin got her label nearly a year and a half ago and in that time has obtained intensive intervention, home tuition and a place in a special needs preschool. Add that to the help she gets from us at home too and you see a totally different child to the one who presented a year ago. As my mum said to me over Christmas, whatever you're doing, keep doing it! She is doing fantastically and I know in my heart, that without the label we wouldn't be doing as well as we are. I just need to sort out my cans in my cupboard and get my middle can relabelled properly so that she too, can move forward....

Tayto Louboutins... Imagine That!

Imagination... its something that has been said is lacking in our children but is something that I have noticed Munchkin does have. Perhaps the countless hours of play therapy I did with her from pre diagnosis days has paid off. It is still something that the SLT said was a problem at her last assessment as she doesn't appropriately play with the toys, ie. she can spend ages setting out a play tea set, but doesn't pretend to feed dolls etc... when she is given toys at SLT she will organise them, tell you what they are, set them out etc., but peers her age will apparently play with them differently. She has an interest in toys and has for a long time, but her attention span can be compared to a goldfish with Alzheimer's at times, preferring to flit from activity to activity, leaving a trail of scattered toys and objects in her path... But she does like toys.




From an early age, Munchkin developed a passion for jigsaws. Strangely though, she never liked to look at the box to see what she was supposed to be making, preferring to work out the picture herself. It was the one thing that could keep her attention for prolonged periods. We started with the usual 2 piece ones and now at 3years and 3months of age, she will happily do 35 piece puzzles. The smaller ones she has now started doing upside down. We have a shelf full of boxes and bags of jigsaws in the kitchen, where if the opportunity arises, she will scale the counter to reach them! Unfortunately, we have a jigsaw munching dog who likes to chew them up so most of our puzzles are missing a piece or if the dog was in a particularly funny humour... the box!



Her love of jigsaws is so strong, that when introduced to them on the computer, mastered the art of dragging and dropping with the mouse to complete them... Only yesterday, when the mouse was missing, she figured out how to use the touch pad on the laptop! She never ceases to amaze me...

When I look at her playing these days, I see a little girls imagination growing and developing. I listen to her "talking" for her toys and realise that she is acting out scenes which she sees at home. I just hope she doesn't act out the fights the Gruesome Twosome have, as social services will be down to check us out ha ha. Can imagination be learned? I'm pretty sure I never taught her to put empty crisp packets on her feet like she did earlier. When I asked what she was doing, she replied "like a shoe." I know that it wasn't what I asked but was blown away by her imagination...

It's beginning to look a lot like Christmas...

Every year, about a week before Christmas, I drag the tree from the attic and reluctantly chuck a few decorations in the general vicinity of the branches, wrap a few lights around the tree (even the ones that half the bulbs don't work) and say job done... You see, I am convinced that I am a direct descendant of the Grinch and quite possibly a distant relative of Ebenezer Scrooge...



I HATE Christmas, the mad frenzy of shoppers making incredible dents into their already screaming overdrafts for the sake of one day. I'm pretty sure the Three Wise Men didn't have an exorbitant Mastercard bill to pay off when Mary and Joseph trundled off on their donkey with the gifts they were given for their newborn baby...

Mr Hammie recently guest blogged on Hammiesblog that Christmas for them this year had been cancelled in favour of a walk in the forest and an avoidance of all the stresses that family gatherings can bring. I found myself wishing I could do the same as it seemed pointless to go through all the rituals and stresses of church, dinner, presents that no one can afford and entertaining Munchkin, hoping that she will smile and be nice to my elderly grand aunt and grand uncle who adore kids, but may not understand Munchkin ignoring them or pushing them away! Then something incredible happened....

I recently set up a sensory room for Munchkin complete with lights, projectors etc and she adores spending time there, so when I drove to a family I work with one night, she saw houses lit up for Xmas (yes it was November!) and that started her off asking for lights... The tutors, myself and her school have been able to use her obsession with lights to talk about Christmas to prepare her for it. I would hear several dozen times a day her say to herself " I want the lights...it's too early for the lights" over and over...



On Saturday, I decided to bin my Black Bah Humbug Santa hat and drag the tree from the attic several weeks before its usual appearance. I actually discovered a few years back that I can drag it up intact through the loft door so don't have to disassemble it (yes I'm that lazy!) and put the boxes of decorations open on the floor. Nothing happened at first then as I started to put a few old pasta angels that the Elder Lemon and Yani had made years ago in primary school, Munchkin picked up a decoration and started to help :) My heart burst with love right there looking at my little girl putting decoration after decoration excitedly onto the tree (all on one branch but hey, who cares hehe) I started to feel a little tingle of something that has been missing from Christmas since the older two hit the teenage years... I felt the magic!! I really thought this year the silly season would once again float over madams head but she has tentatively grasped the concept that Santa is coming and will bring her a present (thanks to www.portablenorthpole.tv) Now I just have to explain every day that its not actually Christmas yet, and that Santa doesn't get stuck in every chimney like he does in the book in school...

I wonder will I start humming the Coke ad.....

Laughter is indeed the best medicine :)

Recession, budget cuts, job losses and illness were pushed back into the far recesses of our brains last Saturday night as once again, the Facebook Family headed out for a night on the tiles. We had had one night out previously last September which was such a success that another Autie Mom Andra, decided to take the reigns and plan a Christmas party to remember. And remember it we will!













A group of us headed out to the Laughter Lounge on the quays in Dublin for one of their party nights. We had come from all ends of the country, from Sligo, Donegal, Wexford, Cork, Kerry, Monaghan and so on... We were promised laughs and they didn't fail to deliver... Two comedians with sharp wit and the gift of the gab entertained us til we laughed our cotton socks off. At one stage, I feared that I couldn't breathe with the guffaws that were bellowing out past my lips! We sipped cocktails, amongst various other liquid delights that helped us to shed our inhibitions and dance the night away after the show had finished. Regardless of age or gender, our fabulous facebook friends boogied away with jaws sore from laughter and a smile on our faces as we put all other worries aside for the night that was in it. Laughter is indeed a wonderful medicine...



With all that we deal with on a day to day basis, the challenges we face when fighting for services for our children, the endless calls and paperwork we must fill out, it is quite easy to become overwhelmed and slip into depression as we forget to take care of our own mental health. That is why having an online community of friends is so important to help lift us up when we feel down, and to offer support when we need it. Meeting up for coffee occasionally and a night out every so often helps to cement those relationships that have developed. Laughing a night away with people that you have grown to respect and consider true friends is the ultimate therapy session! There are times however, where professional councillors can be the best option, if life has become so complicated and dragged you down so far that you feel there are things you can't talk about openly. Sometimes you need the anonymity of a stranger who is qualified and discreet enough to help you sort through your problems. This is where Solas comes in. I have copied and am pasting a section from the IAA blog regarding this...

From The Solas Centre: Parent Counselling Available

Just wanted to make you aware that we now have additional counsellors providing the service at Solas, with availability during weekday evenings. Katie and Paula have joined us this month and I'd like to welcome them aboard.

If you, or someone close to you, would like to avail of counselling/personal therapy service you are welcome to do so.

Just drop a note to counselling@autismireland.ie and we'll put you in touch.
All the best, Yvonne and The Solas Team

Some friends just suck!

Munchkin made a friend this week... She has spent countless hours talking to her friend, sitting in her sensory room with her and will even kiss and hug her goodnight. I should be delighted but... Its a vacuum cleaner! Her new friend is called Hetty and is a close relative to Henry! I can't believe the budding relationship between the two of them and am at a loss when she will kiss and hug her new buddy goodnight but will still reject her own brother and sister and have a mini meltdown if one of them even attempts to get close enough for a kiss or hug when she's heading up to bed.


Its not the first strange obsession she's had over the years. One of her first loves and still a strong contender is stones. All types, pebbles, gravel, big ones and little ones, she loves them all. She would spend countless hours playing with the stones she could take from the plant pot in my landing and would walk around with a select few in her hands. Every time I would bring her to my friends house, she would go to their modern electric fire and take out all the firestones to line them up in order of size and shade. Her husband could always tell when Munchkin had been for a visit as they would be lined up on the hearth and the plant pots would be rummaged through as they had a lovely layer of pebbles on top of the compost... (she would also have eaten some clay and compost but that's another story!)



A relatively new one, along with the hoover, is a preoccupation with clocks, timers and buttons. She seems fascinated but almost anxious with the timer we introduced in her home program, so much so that we replaced it with a visual egg timer. She now notices clocks everywhere she goes and only this weekend while at the swimming pool noticed the clock on the wall. When she is prompted to talk about swimming now, all she will say is "clock at the swimming pool". I'm uncertain how to stop her preoccupation with this though... An easier one to deal with is her wanting to lick the buttons on the television remote... I can take it from her and show her how to use it appropriately! She has only very recently learned to put her tongue past her lips so have caught her licking a variety of things but she seems to favour the remote and the telephone. I understand this is because the tongue is an extremely sensitive organ and it is something babies do to learn about their environment, however I will try to encourage her to only do this in her own home for the time being as some people may not appreciate their possessions being slobbered over!

I will watch the developing relationship between vacuum cleaner and my little girl and decide how best to use this in a positive way (hey, anything that encourages language is good no?) or as one of my facebook buddies said, "switch it on and let her drag it around with her... at least the floors will be clean!"

Even masks have to come off to blow your nose...

The one thing that parents of children with special need are experts at is putting on a brave face. No matter how difficult you are finding things to cope with, its like the glasses you take from the bedside locker each morning, part of your daily ritual. Get up, shower, and put the impenetrable mask on that few are privy to see behind. It is almost as if we admit to others that we are finding it hard to cope, the reality will hit the person we least want to admit it to... ourselves.

I had a meltdown this weekend while visiting my family. I had spent a particularly lovely morning with my Facebook friends, enjoying coffee and chat, and even got to meet the hairier members of the group in the form of Jules and Dusty the assistance dogs. These girls are the ones we allow to see past our shields, the ones who know that struggle to keep our emotions in check and understand why we feel the need to bury them at times.

Stress is something that can build slowly over time too... I like to think of it as my own personal pressure cooker... Lets start with that ingredient ADD, yep can cope with that, throw in a bit of Aspergers, yep still coping, add some more ADD, a pinch of OCD, a smidgen of anxiety, wow.. still managing! Wow, this recipe is shaping to be an interesting mix... Add in a handful of divorce, a dash of depression, a HT program, dealing with the authorities and the powers that be, fill in some paperwork, chase and make phonecalls... yep the pressure is building now but if I only take a little bite at a time I'm managing to keep the meal I'm making down. Stick the lid on, turn up the heat and like a pressure cooker, let a little steam out through a safety valve (my own safety valve is my facebook friends, who get the steam blown their direction and who help me diffuse it before it fogs up my glasses!) Then something unexpected happens and it might seem the most insignificant thing in comparison to the other ingredients in the pot and the valve bursts off spraying the ceiling with the contents of the previously controlled chamber...



This is what happened this weekend... Being slightly oversensitive and a tad over reactive, I perceived advice as a lecture instead of remembering that the person who had offered it only has my best interests at heart. This person loves me unconditionally, has always been there to catch me when I fall (which I have plenty over the years) and has only ever wanted me to be happy. Its my fault that I keep my mask in place and don't want them to see when I'm not coping and stressed. I dropped my mask and dissolved in floods of tears. Ok that last bit sounds like tears rolled gently down my cheeks where in reality, I'm not the prettiest cryer. My face was one only a mother could love, crumpled, red, bloated and there were plenty of tears and snot involved (thanks Dad for the kleenex). I opened up my fears to them and they all spilled out mixed together and jumbled up. I'm sure that it must have been difficult to decipher half of what I was crying about through the wails and tears.

What I have to try to remember to do is not to keep the mask in place with the people who love me most. To allow others in, to help before the pressure pot builds to that point again. I'm sorry now that I hid my stress levels from the person who loves my kids as much as I do. I think a lot of us do that to protect our families and loved ones from having to worry about us. For now, I can put my mask back in place and carry on with the daily grind of appointments and paperwork etc, but I will be asking for help when I need it.


For Mum xxx

A Book with a Bright Pink Cover?

Just over a week ago, I did something I had wanted to do for a long time... I dyed my hair pink! Not all of it, but huge big chunks of it. I'm not talking subtle pastel coloured pink either... Bright, bold magenta. I then waited for the comments to roll in. You see, I'm not totally bonkers, there was an ulterior motive to doing this to my crowning glory. It was a great social experiment to see how others perceptions of me changed, just by changing the colour of my hair. With human nature, people will evaluate others within seconds of meeting them, by the style of their clothes, the way they talk, look, and smell even, and will form an almost instant opinion of what that person is like. It is a self preservation and protection mechanism inbuilt into us to gauge what threat may lie with this individual and if a threat is perceived to protect our children and those close to us.

I was amazed how quickly attitudes changed to me. Not by those who know me well, in fact some of them were very quick off the mark to realise that I had another reason for doing this, but by virtual strangers who may have felt they knew a little about me, but not too much. People all of a sudden felt as if they had a right to pass comment, and to judge my choice. Marks were overstepped on several occasions where very personal comments were passed on my physical attractiveness... Assumptions were made by strangers and I was watched closer by security guards in shops. On the other hand, a lot more people felt free to start conversations with me, using my hair as an opener for discussion. I had teenage girls stop to tell me how much they liked my hair and strangers smile at me for no other reason than to just smile and nod.

We are led by all our senses, not just the visual sense. We judge others by how they talk, what accent they have, where they come from.. We assume for example, that old men with rough hands and skin were manual workers... We believe that when someone is slurring their voices that they are drunk... Not all of these things are necessarily true, but it doesn't stop our instant evaluation of that individual. Munchkin talks with an English accent at times as can a lot of children with aspergers. I joked with a friend on a night out that they must have been drunk as they were a little unsteady on their feet only to be told of the brain tumour they once had. How small I felt suddenly... I have another friend who has epilepsy, and when she's tired her voice slurs... she has never taken a drink in her life. This is where I have my own lesson to learn, not to judge the book by the cover until I have read the contents.

What has this got to do with my experiences with autism I hear you ask. Almost as many assumptions are made of our children. How many times have you heard "well he/she LOOKS normal..." People assume that because our kiddies may not have a visible disability, that their behaviour is down to bad parenting, or that the child needs more discipline. How many looks have you had when at the supermarket? I have had many moment of people tutting when Munchkin has a meltdown in the middle of the shopping aisles. We have had people look and not try to hide their disgust at the "naughty" child! People have actually passed comment to me before that "children were better behaved when you could slap them" implying that Munchkin just needed a good clip around the ear to stop the tantrum. Sometimes I explain, but there are times I'm glad I've have a Nelly like hide which is virtually impenetrable!

The other comment I get a lot is "but she can talk" as if that is all that autism means. I have had to explain the difference on many occasion between speech and communication. Munchkin has great speech now thanks to a lot of hard work by her very good tutors, teachers and school and her siblings. She is not conversational but her comprehension is improving at a great rate. With a good home program in place and a lot of patience, her communication deficits are decreasing. Her aspergers and my hair have that in common, permanent but with a lot of treatment will fade, however my hair will "grow out" but her aspergers is what makes her who she is and I don't think I would like to remove all traces of it. Shes my quirky little madam who doesn't care what colour mummys hair is... In fact she paid no heed to the change whatsoever!