Tuesday, December 29, 2009

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....

Wednesday, December 16, 2009

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...

Monday, December 7, 2009

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.....

Tuesday, December 1, 2009

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

Monday, November 23, 2009

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!"

Sunday, November 15, 2009

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

Sunday, November 8, 2009

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!

Sunday, November 1, 2009

L is for Lemons...

A few nights ago, a fellow Facebooker came online looking for support and advice as a realisation hit her full force and with no warning when putting her little boy to bed. She did the usual nighttime routine but this time, when she said I love you, he answered A is for Annie Apple... The sudden awareness that all her sons responses were rote hit her in the heart like a sledgehammer and left her wondering if her little boy could truly feel love at all... Within minutes of her posting, the troops rallied and everyone was there to help her through this time. Its something that has passed through all our minds when we wonder about our little ones and their problems with empathy and understanding emotions and feelings. The one consistent response that was posted was that our little ones may have trouble articulating their feelings but they certainly do FEEL them. When Munchkin is hurt, or hungry, or scared it's me she looks for... when she's tired and wants snuggles, no one else will do the job quite as good as Mummy. When she has a bad dream and wakes terrified in the night, the scream is for me to come get her and then she curls up so tightly in my arms for the rest of the night. Its times like these I KNOW she loves me. She doesn't have to say the words, she shows me. She will repeat "I love you" if I ask her but she's just as likely to reply to the question of who she loves with "I love Mummys phone!"

I do often wonder about her interpretation of feelings when I'm trying to teach her emotions and the correct response to have when another child has hurt themselves, or is happy, or angry... Her lack of empathy is a problem at times as if one of her peers was to fall and hurt themselves badly, her reaction is to laugh. The comical aspect of someone tripping makes us laugh and is quite typical, and lets face it, we all have a chuckle when someone falls over. The realisation however that the person had injured themselves would immediately trigger empathy in us and we would stop laughing and show and feel concern. Munchkin just continues laughing. This is something that will have to be addressed and taught in her home program as it's just one typical example of where our little ones will have problems if mainstreaming.

My mother asked me recently if Munchkin will ever FEEL empathy, or will it always be a rote response to a situation. I can only answer I don't know to this question, but I like to believe that she will learn empathy and relate those feeling to her own but it's going to take time. It will only be through feeling emotions herself and being reminded when teaching her to generalise that it may register with her. This isn't something that's going to happen overnight like an epiphany, but a long haul process...

The Gruesome Twosome (Elder Lemon and Yani) returned on Friday after spending a week in London with their father and his wife and kids. They have a little brother who is five and a little sister who will be 3 next February. It was an eyeopener for both of them spending time with NT kiddies and they were a little subdued when they came home... They opened up about their feelings to me and told me of the sadness they were feeling as they had their own penny dropping moments as they watched their youngest sister over the week chatting away to everyone and having conversations. They had a dose of "normal" and it hit home strongly that Munchkins problems, even though she has come so far, are quite startling in comparison. They struggle to come to terms with the fact she won't cuddle them or let them kiss or hug her most of the time, and can feel quite rejected by her. They felt scared suddenly for her. After talking through our feelings and worries, they have accepted that to compare Munchkin to other children is unfair and a pointless exercise. Acceptance is the key to moving forward and I'm very proud of how my teenagers have talked things through and made their decisions to accept and support instead of feeling angry on their little sisters behalf. Life is chucking us lemons so we are just going to make some fabulous lemonade :) With love and understanding who knows what Munchkins capabilities and possibilities are...

For Ruthie xxx

Monday, October 26, 2009

Acknowledging your Inner Aspie

Today I once again pondered then genetic links with ASD. Every once in a while, I peruse the genetic links and question where Munchkins particular brand of autism reared its head from. It would be very easy to lay the blame squarely on the shoulders of her blatantly aspie father, but I have to acknowledge my inner aspie too...

I have had numerous conversations with other parents of children on the spectrum and have come to the conclusion that we are all on the spectrum somewhere, with varying degrees of quirks and symptoms. Our children just have more quirks and difficulties that perhaps we as parents have.

As I sat driving up to see a friend this afternoon, I reached back several times with my hand to scratch the back of my neck and it was only when I went to rip the label off my new top, that I realised I have several tops at home with the signature two holes at the neck where I have yanked the label from the top when the sensation became intolerable and couldn't wait til I could delicately remove the offending fabric by unpicking the stitching... Ummm... interesting... I started to think deeper about what other quirks I might have.

One common trait that keeps emerging when talking to other parents is a resistance to change. We like to think that we are fine with it, but only over the weekend, Facebook changed its format once again and there was uproar about it! We don't like when we have to find our way again, we like consistency. Many of us found school years uncomfortable, felt out of place. We seem to have a routine of certain rituals we perform, from activities we do to the predictability of perhaps a Chinese on a Friday night. I personally cannot sit in the sitting room with the curtains all crooked or caught up behind the chair that sits at the window (my teenagers seem incapable of pulling them straight, preferring the yank and leave as it falls option), pictures not straight or a lack of symmetry can ruin my concentration until I am compelled to straighten the offending article... All of this though can been seen as typical behaviour. The one thing that makes me question my own aspieness though is my love of technology...

Is it normal for your pulse to quicken at the sight of a new brochure with electronic gadgetry advertised? I seriously feel my heart start to race as I step into a shop which stocks the latest gadgets and computers. I feel content stroking the keys of a computer keyboard and practically purr when taking a new object of my affection home... I HAVE to have the latest contraption that has been released, even if it means saving like crazy to get it. My favourite toy has to be the iphone, which fits perfectly in my hand, the sleek black casing smooth to the touch and the screen so sensitive you could almost blow on it to change page... What doesn't surprise me is that Munchkin seems to have inherited my obsession with all things electronic also, and would do any task set for 5 minutes on my iphone. What does surprise me is the ease in which she finds her way around the menus at her tender age. Her father also has an obsession with electronic gadgets so it makes sense that she has the love of them too... Apples and trees come to mind!

There was a great post recently on the Irish Autism Action Blog which included a link to online tests by Simon Baron-Cohen which would give you an indication of how strong your inner aspie actually is... Have a go and see how you score ;)

Wednesday, October 21, 2009

Was Mozart afraid of The Dryer Monster??

Today I took Munchkin out for lunch with a friend and was very pleasantly surprised how our trip into town went. We even managed to squeeze a quick browse around a clothes shop without any major incidents. Munchkin happily stood peeling stickers off all the new lingerie that had been displayed while I tried on some coats beside her. I had to let go of her hand to take on and off the selected coats that I had dragged over to the bra and knickers and she was very content to stay put while I did my impromptu fittings. I decided on a lovely new grey jacket and that was placed into the basket alongside several candles, some underwear, a schoolbag and some Christmas cards that Munchkin had discretely swiped and placed there as we went through the aisles. We only had two incidents in the shop where she bolted so it was a good day to try for lunch out.

My friend and I decided on a lovely restaurant we know were there is seating under the stair area next to the bathrooms where Munchkin could be contained in a high chair with a harness and we settled ourselves down and waited patiently for the lasagne to be dropped down to us. All the time, Munchkin entertained herself nicely with the sugar sachets and other condiments... All going fabulously... She even ate some chunky chips (usually rejected as MaccyDees skinny fries are the acceptable ones...)

I decided then that I would take her to the bathroom as it had been a while since she had been and I didn't wish to be frantically trying to dry out a car seat! My guard must have been extremely relaxed as I went straight past the wheelchair accessible toilet I would normally have gone into with her and went to the ladies toilets instead. Whilst she sat on the toilet, another lady had finished her business and washed her hands.... oh no.... how could I have been so stupid?? As the hand dryer went off just outside the cubicle, Munchkin threw herself, terrified and semi naked into the safety of my arms, screeching, panic stricken with the widest eyes you could ever imagine... I should have known better as have had her climb onto my shoulders in a cubicle as she waited for me to finish on the toilet before when a dryer has gone off outside the door. Needless to say, I think a visit to that particular restaurant in the future will be doubtful as she will associate it not with the pleasant and relaxed lunch we had, but the "Dryer Monster" which is what I imagine she thinks it is.

The "Dryer Monster" is not uncommon I believe and have heard it attacks many children on the spectrum. It has been known to frequent all corners of the globe! It particularly likes those with sensitive hearing and is related to the ferocious "Hairdryer Monster"...

Sensory issues affect a huge number of children with autism. All the senses can be amplified beyond what we ourselves could tolerate. This was explained so eloquently by Hammie in her blog Hammiesblog

"Autism is a sensory disability in which everything your child sees, hears, feels, tastes and smells is distorted. They may see every strand of hair on your head individually with more detail than a Dandruff commercial, hence the need to push your hair off your face. They may taste food in individual components that make the slightest change to the recipe seem like an entirely different food. Touch can be too light to feel or too intense to bear, or both! And sound most unfortunately can be very distorted, either because they hear everything and cannot tune in to what’s important, ie. your voice, or because they only hear the higher sounds or the lower sounds that are in their environment."

I have been lucky that even without any official Occupational Therapy, my own home program that I implemented has been very successful in desensitising Munchkin to a lot of her sensitivities, touch especially was difficult for her, but now will actively seek contact with me. I have noticed however, that her sensitivity to noise seems to be increasing, not hugely, but is increasing. She will several times a day (well several is a bit of an understatement... several hundred times a day!) "Whats that noise...." It could be a clock ticking, or a washing machine in another room or the neighbours dog barking, or the wind blowing etc.... I've also noticed that she is getting more interested in musical notes, particularly mid range tones. While at my mothers house, she has a piano and unlike most children her age, she does not bang and clatter the keys, rather will press them gently, finding the notes that please her best. She does the usual press every key in sequence but then will place both hands palm down on the ivory keys and press several keys with each hand until she finds some that sound pleasing to her ear and holds them down as the notes resonate through her hands... Perhaps I have a budding pianist on my hands...

Tuesday, October 13, 2009

Just answer your name... please!

People often comment these days how fast Munchkin responds to her name... this wasn't always the case. As with the majority of children on the autism spectrum, this was one of the first red flags that was raised with her. You could call and call her name to no response. I tried changing the tone and the pitch of my voice to grab her attention... zilch. I may as well have been talking to the kitchen wall (which I must admit, has had a fair bit of one way conversation over the years!)

I spent countless hours, days and weeks trying to teach my little girl her name, and to respond to it. All the usual tricks and lessons were tried... mirrors, photographs, videos etc and slowly she started to respond on occasion. Every night, our routine after dressing for bed, washing teeth and saying goodnight to her brother and sister we would stand in front of the bathroom mirror and I would say "Who's that?... Its Mummy"... and "Who's that?... Its Charlie." This was repeated every time we passed a mirror, or even just a shiny reflection in a window and I'm sure that I attracted strange looks from passersbys at times. Like so many other things I was trying to teach her, an opportunity to teach missed was an opportunity lost. Life was a series of prompts and knowing when to fade them out!

The day that sticks in my memory as a pivotal turning point, and making me realise that answering to her name was top of my priority list was the day she made my heart pound with terrorising fear. As with many children, my daughter is a descendant of Houdini... There is little that can contain her if she decides to escape. On many occasions, she has managed to give me the slip at home and I will find her testing windows and doors. From a very early age, she would scope a room as soon as we entered it, mentally clocking up the escape routes! Our home is typical of many families I know where it is under lockdown constantly. Doors and windows must be locked at all times, and I have constructed a "safe zone" at the rear of the house where there is a combination lock on the back gate so that I can at least boil a kettle without keeping her within my sights. I still don't trust her for a second as when she's a little older, she'll be up and over that fence before you can blink!

The day in question however, we were visiting a friend and her son. She also has a "safe area" at the back of her house as it's just been built, the acre of land its on has not been landscaped and backs out onto a main road. Her fences are slightly lower than mine so I was mindful of being on higher alert than usual. We locked the doors to all the rooms, only leaving the sitting room, a bedroom, the kitchen and play area accessible... The two kids were happily pottering around and keeping themselves occupied. Every few minutes we would check to make sure that they were ok and that Munchkin wasn't eating anything odd, like the charcoal from their fireplace...

I sat drinking a coffee and realised it was very quiet in the sitting room so went to check the kids. My friends son was sitting quietly watching television, but there was no sign of Munchkin. I checked the bedroom but she wasn't there. Out to the play area and once again it was empty. I started to get that panicky feeling in my chest. I ran back inside and started calling her name again.. over and over... My friend was searching in the bedroom, under the bed, in the wardrobe calling out constantly. I started shouting her name and checked the sitting room once again.. She was GONE!! Outside we ran, abandoning my friends newborn son on the kitchen floor tearing through the overgrown garden shouting, the fear evident in both our voices now. She ran down the lane towards the main road, while I headed to the back of the brush and the little gap in the hedgerow where cars were whizzing past. There was no sign of her at all. Tears were flowing now and it was all out panic stations. My mind went where no mothers mind should ever go and I ran back into the house, ready to call the Gardai (police). We did one more check of the house shouting frantically her name and there was no sound at all. Then, out of the corner of my eye, I saw something move in the corner of the sitting room.... I ran over and pulled the lid off this little plastic crate, barely big enough for a cat and there she was, all squashed in with the lid pulled over. I cried and shook with relief that she was safe and unharmed but I'll be honest, the shock of that day will stay with me for many years to come. THAT was the day that answering to her name became my primary focus.

Nowadays, as soon as I say her name, she replies quickly and firmly "yes!"

I have thought of this day a lot over the last week, especially in light of the story of Aisling Symes, the little angel whos parents have to deal with the overwhelming loss of their daughter. My thoughts are with them xxx

Sunday, October 4, 2009

For Luke and Lucy :)

Something amazing happened this week which has left my "Autie Family" on Facebook grinning like proverbial Cheshire cats... Since our very good and totally wonderful friend posted her news up on a status, we have all been walking around looking as if we have coathangers wedged in our mouths as we cannot stop smiling. There have been tears of joy, whoops of happiness and emotions running high in general. What could possibly have triggered this tidal wave of emotion....

Ok-wasn't sure whether to post this news.....
Yesterday, Thursday October 1st 09, Luke spoke 1st words, hes almost 10 and lost his speech at 15 months!!!! Never believed in miracles, but do now, its all down to such dedication of Lukes tutors...we had gi...ven up on speech, it used to be top of our wish list, but major toileting issues & understanding took over. Things just seem to have clicked with him now, we are so happy for Luke & very very proud.....and today more new words!!!!! His 1st word yesterday was an unprompted "BYE", in a very deep voice, amazing!!!!!

These words and the updates we have been receiving on his progress have given others renewed hope. He is the inspiration now for countless parents who despaired of ever hearing their loved one speak. Luke is responsible for many parents finding the strength and energy to carry on. I have never met him in person, but know his mother Lucy both online and in person. I met her through a special needs forum and she was my first facebook autie contact. Its not surprising to me that she has such an amazing son as she herself is an amazing woman with such strength and commitment to not only Luke, but to all her family. She has fundraised tirelessly for the Assistance Dog program, thrown herself off buildings (well absailed down them but to me its the same thing hehe), is always volunteering to sell pins, or lego blocks, or pack bags or whatever is needed to raise funds for services for our wonderful children. She has always been there to offer me words of support when I'm feeling low, or to celebrate with me when Munchkin achieves something. Thank you Lucy.... This astonishing and wonderful achievement of Lukes could not have happened to a more deserving person and I know that you will savour every word...

Even if we have given up hope at times, our children haven't :)

Monday, September 28, 2009

Where we are now....

As I sat and perused Munchkins files tonight with a friend whose son has recently got a diagnosis of autism, I looked back with amazement at how far she has progressed. When I realised that a mere 11 months ago, she had a handful of rote phrases that she said such as "ready steady go" and "splish splash splosh" (from the Rubberdubbers), I had to re-read the questionnaire that I had for the psychology department as it seemed impossible to me that it had only been filled out last November... but indeed it had. The forms had been filled out and I had copied them as part of our Assessment of Need process which was supposed to have been completed within a six month time frame and a Statement of Need issued. In reality, it took sixteen months to complete, and we would probably still have been waiting if we hadn't been such a squeaky wheel! Looking at the forms reminded me that Munchkin had only just started to call me Mummy at that stage, at 2 years and 2 months of age (and what a feeling that was!).

We finally had our last link in the AoN process carried out ten days ago so apart from waiting for the Statement to be issued, its over! I was so nervous attending the psychology evaluation as was terrified of being made feel crazy as she has progressed so well now! The assessment took 2 hours to complete, and Munchkin was a complete angel during this time (no, I didn't give her Smarties washed down by Red Bull to show her at her worst hehe... it's just they are not on her list of accepted foods lol)...

I had heard a lot of negative comments regarding the psychologist that we were seeing so I had already formed an opinion of him before we even stepped into his office... I won't be so narrow minded and blinkered in future as I couldn't have been more wrong about him. Its indeed a lesson to reserve judgement until you have all the facts and not let yourself be swayed by others opinions. I found him to be friendly, open and approachable. He went through the complete cognitive set of puzzles, boards, books etc with Munchkin scoring her appropriately. She did try to control the sets but without much luck. At the end of the session, we talked for approximately half an hour and he concurred with the diagnosis the Professor had given her of Aspergers. Then he gave me the IQ scoring... 80-110 is considered in the normal range and she had scored 88, which meant she doesn't have what they class as a learning difficulty. It did surprise me somewhat that she hadn't scored in the higher end of the average range. I don't wish my child to have a "gift" either so I don't know why exactly my gut was squeezed a little... She doesn't care what her IQ is so it must be my own ego that was disappointed and I remind myself that it shouldn't matter anyway! (silly vain egotism go annoy someone else...) T'is only a number!

She has settled remarkably well into her new preschool and I am delighted with how much she loves going in every morning. There is a lead teacher and 3 snas in the class with 7 children so she's getting lots of attention and learning well. It is a mixed group of special needs children with intellectual or physical disability and she's mixing well with them all. A few transitioning problems and her staying on task needs a lot of work as she can't be Cyclone Munchkin whilst there and must participate with group circle time etc. They have yet to get her to even try yogurt as its "sticky" but its early days yet so we'll keep at it. She's staying on longer on a Friday from now on as they do an eating plan with some of them so that will be good. Potty training has been a bit hit and miss over the last few days but we're getting there slowly...

On the Home Tuition front, we have finally ended the saga of the "missing SENO" (the one who decided in their infinite wisdom to release the forms for signing and go on holidays for 3 weeks a couple of days later, leaving lots of families in limbo!). After squeaking a lot and become a regular pest, the Senior Seno finally organised someone to sign Munchkins forms so I could get them to the DOES. With a couple of dozen more calls to them... the hours were sanctioned :) Then then next paragraph... tutor only sanctioned til Oct 31st as not meeting the full qualifications of the department..... OMG she has a psychology degree, years of teaching experience etc... But no, they want me to find a primary school teacher who may or may not have experience with children on the spectrum! Muppets!! I once again start the next round of "satisfy the dept" by looking for a suitable tutor. Then I found one! I think I must be a cat as fell on my feet this time. She's the teacher in an ABA unit and highly experienced. We arranged to meet for a chat and I found her to be extremely capable, friendly and thought she's exactly what Munchkin needs. She started today and immediately Munchkin accepted her, played with her and liked her. I feel that she liked Munchkin too so hopefully, and fingers
crossed, its going to work well :)

I can allow myself a little breather for a few days now before the bedlam starts all over again :)

Tuesday, September 22, 2009

A Night to Remember...

The end of September is closing in fast and I haven't given the blog as much attention this month as I should have as have been preoccupied with arrangements for school, games such as "Hunt the SENO" and "Pin the reports on the DOES"... There was also the run up last minute arrangements for the first "Facebook Autie Parent Night Away" that was held last Saturday night in a Temple Bar hotel where almost 50 parents managed the difficult feat of arranging childcare and spending the night in the very good company of other parents who understand our kiddies needs. I blogged here about the importance of having friend who "get it" and was delighted to meet so many of the friends I have made online last Saturday.

It was an incredible experience to talk to so many who share a common bond. Our stories and experiences may differ but over dinner, and late into the evening, there was laughter and smiles while we exchanged stories and gave and received advice from all there. As one mother posted up on Facebook the next day, it was liberating to laugh about and talk about things as diverse as "poos in the swimming pool" and other such quirky things our kids get up to :) There is already talk of another get together before Christmas and I for one can't wait!

The other effect a night away had on my life is that my family have a greater understanding of Munchkins needs now. My mother and father had her overnight, and where they may not have really seen the communication deficit very clearly before, they now can be added to my list of people who "get it". You don't realise how much you fill in for your child and translate their body language etc until you are not there and the communication breaks down. I am so grateful for having family that are supportive both physically and emotionally, but even more so now that they have a greater appreciation of what my little girls difficulties are. It saddens me greatly that there are so many girls I talk to online that lack this type of support as may be living a distance from their families. We have all found each other to watch our backs and give support to one another but how many others are out there with no lifeline to cling to when times get tough? If you know someone in your community that may need help, reach out and let them know they are not alone. You may not be able to offer physical support but emotional support is equally (if not more) important.

Saturday, September 12, 2009

Tiaras Tears and Tantrums...

Today I took Munchkin to have some passport pictures taken... What should have been a simple task turned into a monumental task of epic proportions to cajole a completely reluctant Munchkin to even look towards the camera never mind get one that would meet the strict passport criteria! Thankfully it didn't need to be perfect as was just for school purposes but I really didn't want to send in a picture of a wailing, red cheeked tear stained child to have on permanent record!

I have used the chemist before to have a passport picture taken of the little boy I worked with previously. That was also a challenge as was for an actual passport and he didn't want to play ball either. I knew this was the place to go to as the staff working there have the patience of Job when it comes to getting an acceptable picture. Today, they would need it. After 10 minutes of Munchkin not complying, whinging, me bribing her etc etc... I decided she needed to have a break to calm down and I took her away to have some juice and a biscuit in a nearby quiet cafe. When her face had returned to a normal colour and not some shade of crimson or scarlet, I returned to the chemist and told them "be ready"... He took out the camera, I placed Munchkin in front of the white screen and then I proceeded to leap around like an idiot, singing in an operatic Miss Piggy voice and then the impossible happened... she smiled! SNAP picture taken and job done. I didn't care at that time that I had attracted an audience who thought I had escaped from the local asylum.

I should have called it a day after getting that first task marked off my to-do-list but I foolhardily plowed on with my next mission... getting some new shoes for her. I won't go into details but it involved me walking out with her new shoes in a bag, her barefoot and having a mini meltdown...

You would think then I'd go home? No, not me. Being a total glutton for punishment I headed to the local supermarket as needed to collect her birthday cake for her party tomorrow. I think it was total sensory overload for her at that stage as the manager ended up coming over to see if he could assist us at the checkout as she was in total meltdown at that stage. Her big sister was mortified with her behaviour at this time so we just rushed through, shoving the purchases higgeldy piggeldy into bags. All the time, the manager was trying to talk to Munchkin about Santa not coming to naughty girls and for once, I didn't bother trying to explain her aspergers, I just adopted her attitude and decided to blank him too...

My little princess is fast asleep now and I just looked in on her and smiled at how beautiful and lovely she is. Days like today are not too often and the lesson I have learned is to not leave everything on the long finger til I have to do it all on the one day. I didn't prepare her for what we were doing today either so I only have myself to blame when it all goes wrong!

Tuesday, September 1, 2009

"What... you want me to eat that??"

Every day, I sit and wonder what I'm going to cook up for Munchkin for her breakfast, lunch and dinner. I think about what stains least when it's spat back at me. I ponder the thoughts of just giving her biscuits and her milk for an easier life... but the responsible parent deep within me knows I must at least attempt to get her to eat something slightly more nutritious than a box of Maccy Dees fries and burger meat (no buns, no sauce and definitely no pickle!!)

I'm not alone in this curious battle to get my little girl to eat. A huge percentage of children on the spectrum have issues when it come to foods and what they will accept on their plates. When Yani was little, she was an atrocious eater and I looked for help from my GP who said to me at the time "no child will willingly let themselves starve to death." I do believe though, that I have met some girls who's children would rather starve than eat what is presented to them.

Munchkins food issues started very early on, even when feeding her myself, she wouldn't let me hold her close, preferring me to lie her on the bed beside me and would only take a small amount at each feed. When I returned to work and my friend was minding her, she point blank refused to feed from the bottle and my friend frantically was dripping milk into her mouth as was worried she'd dehydrate before I returned! When she was introduced to solid food, she would only eat pureed foods and would choke on lumps of any type. Forget about chewing...

Before diagnosis, I read up a lot about food issues as slowly but surely, more and more foods started dropping off her list of accepted foods. There was a definite problem that needed addressing fast. I had a feeding assessment done which I blogged about here, and that showed up that it was definitely a sensory problem she had rather than a behavioural one so the battle to introduce new foods began...

I read a fabulous book called "Can't Eat, Won't Eat.. Dietary Difficulties and Autism Spectrum Disorders" by Brenda Legge which explained very well to me the different issues our kids have when it comes to foods. I laughed out loud at one woman's description of variety in her child's dinner was if she was allowed to put the ketchup to the right of the nuggets and not the left! It is well worth a read and if you look at this link you can read the first few chapters and get a feel for the book.

For months and months, Munchkin would eat the same dinner every single night. Pasta with Bunalun Organic Tomato and Vegetable sauce... On the advice of the feeding therapist, I allowed her to have the same breakfast and dinner each day and only had to battle with her at lunchtime to at least try a new food. Using reinforcement and promise procedures it took a long time, but eventually I managed to get her to accept a few new foods. We now had pancakes, pasta, sauce, yogurt, fruitapura, crackers and salmon in her daily diet. I was delighted to have a variety of foods I could offer her (I know that a lot of readers would think there was a very limited range of foods there but considering some kids will only eat one or two types that was a lot!) Then disaster struck... she stopped accepting pasta and sauce at dinner and would nearly throw herself out of the highchair to get away from it!) I needed to find new foods....

Nowadays, she will eat a bit more for me and even last week ate her very first piece of birthday cake! I nearly danced with joy when she picked up a fork at a friends birthday party and without me even suggesting she try it put some in her mouth!! A huge milestone for Munchkin.

Dinner these days is usually spaghetti bolognaise with spiral pasta shapes (if you change to a different shape it's not accepted) I have her eating bananas and a variety of potato shapes and waffles for lunch, and she now tries dairy free chocolate (no daughter of mine could go through life without chocolate hehe) She still wants to be fed as doesn't want her hands to get sticky, and will not eat anymore if any is spilled until it's cleaned up but its not as much of a struggle these days as it was...

Tuesday, August 25, 2009

Friends who just "get it"...

I'm currently blogsitting for the lovely Hammie on her work blog and it got me thinking to friendships that have evolved since Munchkin got diagnosed... Like so many mothers of children with special or extra needs, it's not until the chips are down that you find out how strong your friendships are as you become almost consumed by all the therapies, appointments and all the extra needs that your child has on a day to day basis. Autism has an almost instantaneous grip of your life, spreading and seeping into every aspect of what you do. It controls where you go, when you shop, what your child wears and so on and on... Needless to say, you become almost obsessed with finding out everything you can about ASD, and its a huge spectrum so this takes up a large amount of any time you may have. Whilst your friends you have may have even grown up with, can show some empathy and sympathise that you cant "take Johnny to the playground because its next to a main road and there are two exits", very soon they may tire of hearing about the extra needs your child has. This is why it is so important to have a support group or network of friends to talk to when things are getting you down, or if you're having a hard day as they "get it" without even having to explain. All you have to say is "shes nudie again" and they'll understand that you may have had to put your little ones clothes on ten times already that day! You don't have to explain why you need to put clothes on back to front or sew the zip up on all-in-one pyjamas... they just get it!

One of the first places that people look for information on their childs diagnosis is the internet. While you can get very useful information via the web, you also have to be so careful what you read as not everything that is printed or put up on the net is scientifically tested or tried. Whilst trawling through web pages myself, I joined a parenting website Rollercoaster and found a huge amount of support from the girls on the Special Needs forums. After posting there for a number of months I started to get to "know" some of the girls. One mother posted me on some Hanen books and we got chatting. We both signed up to Facebook so that we could see pictures of each others families and found more of the Rollercoaster girls on there too. Hammie had set up a Facebook page for Irish Autism Action and we found her and when she added us she introduced us to huge amount of autie moms and that's where I found my real support network! I'm not saying that family and friends can not be supportive but there is something amazing about having the support of friends who may not walk in exactly the same shoes as you, but wear a similar size and type!

I've been using Facebook for over a year now and the majority of my "friends" are parents of kids on the spectrum and we fondly refer to each other as our "Autie family." Any new parent who joins us might not understand immediately where the "support" is in our group, as it looks like a bunch of people doing quizzes, or playing Farmtown or sending each other gifts or hearts... But look a little closer and you will see someone post a status saying they're having a tough day... very soon there is a handful of parents online, asking how they are, sending them support and generally just letting them know they aren't alone (which is so important in my books). You don't HAVE to do these applications and no one thinks any less of you if you don't. Status updates are often questions looking for advice or just statements of how you are feeling. Lots of parents use them to celebrate the big and the little achievements our children make :) There is also the private mail facility where you can ask selected friends advice if you have a sensitive subject you wish to discuss, and don't necessarily wish to post to your profile. It really is a wonderful resource at your fingertips, especially if like myself you cannot get out to support group meetings very often. Regardless of what time I have ever come online, if I can't sleep or for any other reason, there has always been someone else online at the same time as we have members of our Facebook group in all continents :)

"From little acorns great oaks gr

Wednesday, August 19, 2009

Social Stories with Peppa Pig...

Jazzygal did a great post on her blog recently on obsessions and using them to harness your childs skills such as hand eye coordination, fine motor skills, communication and problem solving, and as I read it I couldn't help but think about Munchkins obsession with Peppa Pig and other television programs. I don't know what exactly it is about that precocious little piggy that seems to catch her attention more than any other character has but I am grateful to the makers of the series as they have provided me with one of the most valuable tools I can use with Munchkin... Social Stories.

You may laugh at the thought of Peppa Pig as a tool for autism but I firmly believe that she has smoothed the path of visits to the doctor, dentist etc admirably. For every situation we have encountered, there seems to be an episode that relates to it. I remember having to bring Munchkin to an eye test and prepared her for weeks beforehand watching the episode where Peppa goes to the optician... We had to wait as they were running late so she started acting up... By the time we got in she was a bit wound up so I reminded her that this was like when Peppa went to the optician.... The Orthopist corrected me haughtily so that was enough for me to crack... I growled at him "Until they make a Peppa Pig episode with an orthopist... you're a damn optician.. RIGHT!" I was a bit stressed....

You don't have to buy expensive tools or kits to make social stories work for you. I have seen excellent social stories with hand drawn matchstick men which can be very effective. The web has lots of free drawings you can download and print off to do your own. One of my best purchases was a Tesco Value Basics laminator and I print off pictures and with my glue stick and laminator have made practically indestructible story books.

I took a series of photos for my niece over the summer when she left her beloved "Ducky" at my house after a visit and posted them onto my facebook page everyday so that she could follow "Duckys Holidays" until we were able to reunite them (posting wasn't an option in case he went awol...) I was surprised how many professionals got into the spirit of things and let me photograph them with the stuffed duck when I explained what I was doing. He visited the dentist, the doctor, the pharmacy and the hospital (xray dept for the Elder Lemons pneumonia which this bad mother was just giving paracetamol and sending him off to school!) These pictures can now be used for future social stories I have to write for Munchkin too...

Thursday, August 13, 2009

"Perspective Parenting"

As a reader of several great blogs, I have noticed a lot of discussion on a certain blog where a mother vents her anger and bitterness regarding her childs ASD diagnosis. The New York Times also published an article called "The Unvarnished Reality of Autism" which was a reaction to a stress study on parent of children of autism. I truly feel for the mother whose reaction to this study was published and am glad that names were withheld for her childs sake. To go through life feeling this bitter and twisted must eat away at her soul everyday! I can't help but worry how her son will feel if he reads his mothers words when he grows up too and realises how much his mother resented her life with him... It made me sit back and question why I am a positive parent and haven't been consumed by the sardonic cloud that seems to envelop others. I think the answer lies in "Perspective Parenting", and the definition of normal.

I have been blessed to work with a lot of fabulous families over the years in my job and meet some of the most amazingly positive people. The children I work with all have varying degrees of disabilities, both physical and intellectual but all severely effected. They are all great kids, with different personalities, likes and dislikes with the one thing in common... their smiles light up the room. When I first started working with them I would have to "look past" the disability where four years down the line, I see the child and not the restrictions their disabilities place on them. I have the utmost respect and admiration for the mother of some of the kids I work with. Where it could be expected of her to feel bitter or depressed, she is without doubt the most positive inspirational person I have ever met. Instead of wallowing in pity, she started a support group for parents of special needs children, councils and helps others, has unending energy and time for her kids, and is always celebrating any small gain they make. My life is a walk in the park in comparison so when I start to complain about Munchkin bolting or running off, I thank my lucky stars that she can without the aid of calipers and frames. When I moan about Munchkin not eating many food types or not wanting to try new foods, I remind myself to be grateful that she can eat, that she doesn't have to be peg fed, that she doesn't aspirate fluid from her foods down into her lungs.... When I get frustrated that Munchkin is still not toilet trained, I think of the health board nappies that she won't have to get as she can be trained, even if it takes a little longer. Perspective... its a great tool to use when it comes to giving us a self administered kick-up-the-bum! I'm not saying as a parent of a child with special needs that you can't attend a "pity party" occasionally, but don't overstay your welcome and become a permanent resident!

Instead of dwelling on what Munchkin can't or won't do, I prefer to celebrate what she can do. She is an amazing, happy fun little girl and her possibilities are endless so long as the people who love her stay positive and never clip her wings with negativity and disappointment. Another mom I talk to asked me recently when I was telling her about certain events in my life "how do you stay normal?" Am I normal? What is normal? I don't know anymore. To me, my life with my three children is "my normal". Hammie from Hammiesblog coined a great phrase recently which I love "Neural otherness is awesome" Says it all really!
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Sunday, August 9, 2009

Full House of Alphabet Kids...

Alphabet 05Image by Leo Reynolds via Flickr

Following a lot of discussions with fellow mothers of children with various disabilities, I noted that a lot of parents who already have one child with a diagnosis are often accused of "looking for problems" in their siblings... It is astonishing how many are told that they "want" something to be wrong, or that they are "disappointed" if everything turns out to be alright after worrying about their development. With autism, what most people don't realise is that after one of your kiddies has been diagnosed, your Autie-radar is switched on permanently. We read up on everything we can find to equip ourselves to deal with the diagnosis, and keep informed of current therapies. The life of an autie or aspie mom is a busy one of constant appointments, research and reading in order to help our child as much as possible. If your child had broken its leg, you would do exercises and physical therapy to help heal once the cast is off so that the muscle doesn't waste and your child can be up and running around again. Is what we do any different? No, only we are exercising our childs brain and training ourselves to be the most important therapist your child will ever have. With all this information going in, it's natural we will start to look at any behaviours in another sibling differently... What we may have written off as the terrible twos/tumultuous threes/fearsome fours etc. in our first baby, when we see behaviours in another child, we look at them in more detail to see if there is anything underlying there so we can intervene and help that child too. Does this mean we "want" something wrong with our child?? Hell no!

I had the opposite happen after Munchkin got diagnosed. As I said in a previous post here when my son got diagnosed with ADD it was a bolt out of the blue and something I could never have imagined. Had I been more aware of disability when he was younger, I would have noticed the signs as they were there but I just didn't see them! The tapping, the wandering off, his constant loss of attention, getting distracted in shopping centres by something that has caught his attention and just going to have a look without informing anyone... these are just a few of the things I never noticed at the time. It never occurred to me that there could be a reason for it.

When my teenage daughter came to me and asked to see the doctor, I put it off as long as I could as didn't want people thinking I was "looking" for problems... As her mood swings got worse and her intolerance for certain sounds drove her to eat in different rooms as she couldn't bear the sound of people chewing (even with mouth firmly closed) I knew the time was coming that I'd have to deal with her problems too. She was making lists of characters in TV reality shows she was watching, and HAD to control the television. No one was allowed to use the remote but her and if anyone tried to.... well the outburst was not pleasant. More than one remote got shattered against the sitting room walls... I started to wonder if this was more than attention seeking (my original denial to myself as didn't want to believe that all three of my beautiful children had problems) and looked in more detail. She was depressed beyond belief and when she came to me and said she'd thought of ways to kill herself that sprang me out of my denial and I made the appointment to see the GP the next day. Once again, it was another €55 to be made felt that I was looking for problems (see original post here) My poor Yani walked out of the surgery after being told to "snap out of it" and to "look for something positive when someone annoys you"... BUT, I did get my letter for the Child and Adolescent Psychiatry Services to have her assessed which is what I went there for. I hadn't expected anything remotely like empathy or understanding from the doctor so wasn't disappointed when it wasn't forthcoming (she did up my dosage of antidepressants though as obviously thought I needed that!)

I organised counselling for my little girl and rang the CAPS myself. Once again, they were wonderful and we weren't waiting too long to be seen. Yani was subsequently diagnosed with ADD, clinical depression and traits of OCD and she was put on Prozac... I now had a full house of Alphabet Kids...

People often when they find out about all three having a diagnosis will tell me they're sorry.... I don't feel sorry for myself or my kids, we are who we are and are working towards making life a little less stressful for ourselves through intervention, communication and understanding. Our house is never dull, and we certainly could never be compared to the Brady Bunch. We are close and even though there may be a lot of fighting at times, the teenagers are good kids. A day doesn't pass without hugs and kisses from them :) I love you kids xx
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