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

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