Saturday, September 11, 2010

Brushing Teeth

Princess hates, and I repeat, HATES having her teeth brushed.  Autism is an affliction that can cause oral sensitivity, and I can only imagine how intrusive it must feel to have a toothbrush in your mouth when you can't handle the slightest touch that is invasive.  As a result, Princess's teeth are not in the best condition.  The only solution is to wait until she needs a lot of work done and then go for a general anaesthetic and get it all done then.  This is pretty drastic and the last time we had it done was when Princess was 8 years old. 

How do I brush Princess's teeth?  I do it in very short bursts.  It is easier when she is sitting down, I think because of the angle of the toothbrush being easier for her to tolerate.  I sing "This is the way we brush our teeth" and say "Open" so she will open her mouth.  Then I run the toothbrush over Princess's front teeth, then she closes her mouth, I say "Open" and run the brush over her side teeth, then "Open" again as I repeat the task over her bottom teeth.  It truly is a task that is quick but definitely NOT easy.  Princess loves the rinse part, she can't get to it quick enough.  In this way I comfort myself that it isn't too traumatic for my girl - because she is SO happy to get to the rinse part. 

I have taken Princess to the dentist regularly and she is used to the chair and the dentist.  What she isn't used to - and perhaps won't ever be used to - is the opening her mouth and keeping it open until they have finished checking her teeth.  To try to minimise the risk of her teeth just rotting away I try to make sure Princess doesn't eat too many sugary foods or drink too many sugary drinks.  In this way I figure I'm balancing out the fact that I can't brush her teeth properly with the fact that if she doesn't eat or drink too much rubbish, it won't matter!!!

Brushing teeth - who would have thought it would take such a major effort?  It is just one more obstacle to clear away to bring Princess into my world.  I am hoping that one day her oral sensitivity will diminish or even disappear, but until then, I just have to keep on doing the best I can - and not give myself a hard time that I am not doing enough. 

More next time.

Saturday, August 28, 2010

Saturday August 28 2010

Today wasn't one of our better days, mainly due to the fact that I have been so much on edge today and very snappy.  Saturday is our shopping day and after a big week where John's back operation was cancelled and we are all exhausted I just didn't feel like facing any crowds, least of all lining up at the checkout.  First obstacle for the day was I forgot my bag and had to ring John to bring my wallet into town (a 20 minute drive).  Princess was in a clutching mood all the way in and kept on bashing me on the shoulder to get my attention so I could repeat "Going shopping" over and over.  Finally on about number 28 I snapped - some days it takes me at least till number 50 - so I'm yelling and Honeybee is yelling and I realise I should definitely not be yelling it does no-one any good least of all me....
Got my wallet from John and it was into the supermarket for us - Princess kept fairly close to me and only tried to hug two people today....the supermarket was fairly quiet so that was a blessing.  I have started getting Princess to hand over the money to the checkout operator.  Even though she doesn't understand how much things cost it is some form of independence and that has to be a plus.  Imagine being 15 years old and not knowing how much things cost!  Probably most parents would be ecstatic if their teenager didn't ever hassle them for money or new clothes.....but I would so love Princess to be hassling me about these things!!!!  I would love it if Princesss wanted to earn her own money like Honeybee will when she is 15, it's a part of going into adulthood, getting your first part-time job.  And as for is so hard to find Princess clothes she will wear as there are so many clothes she hates the feel of against her skin.  It's shorts and tops or pants and tops or skirts and tops and that's about it.  I take Princess shopping and she indicates she likes this or that but when we get home I can't get the clothes on her, she refuses to wear them.  My Honeybee is delighted with this because it means she gets lots of extra clothes but it breaks my heart that Princess won't wear fashionable clothes and hates wearing shoes and so wears the same old thing over and over again. 

Back home and I realise that I don't have my key to get in as it's in my bag and John isn't home.  So back on the mobile - how did we ever cope without mobile phones? - and I drive another 20 minutes to meet John and get the key.  Finally back home we unload the groceries and Princess can watch her new DVD - Toy Story.  Yes, she loves Toy do I!  It's one of the best stories ever.

And another day now is ending.  The rain is pouring down outside and I reflect on how I have coped with being Princess's Mum today.  I wish I didn't ever yell at her.  I wish I had more time to slow down and relate to her better, try to be in her world instead of wishing she was in mine, try to understand how it must be for her.  I say to Honeybee that I feel like I am a bad mother and she reassures me that I'm a good mother because a bad mother would not be questioning her mothering skills....    But seriously, every day with Princess I need to reflect on my behaviour so I can be the mother she needs. 

More later.

Monday, August 16, 2010

Monday August 16 2010

Things are settling down a bit this week with things back to normal after our week of sickness last week.  Being non-verbal, Princess can't tell me in words when she is feeling sick.  I can usually tell though - for one thing, she gets very lethargic and sleepy and actually wants to lay on me or cuddle me.  So the sickness is a double edged sword - I get the cuddles I long for but I also get to clean up whatever mess my beautiful girl makes as a result of her sickness.  It's like having a toddler in a 15 year old's body - you get the picture!

On Mondays at school Princess goes shopping at one of our local supermarkets.  Princess and her classmates have the catalogue and the parents circle whatever good they want their son/daughter to purchase.  I provide the money in Princess's purse.  This is a great exercise as Princess has to locate the good, find the correct money, hand it over and wait for her purchase.  The program at school is focused on life skills as this is what these young adults need to learn most of all.  It would be a dream come true for Princess to one day be independent.  If not, then the next best thing is semi-independence and things like handling money and doing her own shopping can be accomplished with support.  The life skills Princess needs help with are very simple ones really - dressing herself, brushing her hair and teeth, bathing herself.  To imagine one day she will be able to do these things by herself would be fantastic.  To hear her say "Mum" one day?  I think I would cry for a week!!! I settle at the moment for "Mmmm" - does this mean I am a "yummy mummy?" 

Keep on achieving beautiful girl, one step at a time....

Thursday, August 5, 2010

Thursday August 5 2010

Princess is one tired young lady tonight.  She went horseriding today and yesterday went to the gym.  The horseriding is amazing - it is with an association called Riding for the Disabled and Princess's horse is called Forest.  The gym is a modified gym session just for people with disabilities.  Like anyone, Princess functions so much better when she is eating well and exercising.  When she isn't being looked after in this essential way, her equilibrium is really out of whack and her frustrations can cause her to self-harm.  This can take the form of poking herself in her eye, hitting herself in the head, or biting the back of her hand.  This is accompanied by guttural screaming.  How absolutely powerless I feel when Princess is hurting herself!! It is the worst thing ever to witness your child wanting to do damage to themselves.  It is always frustration that causes Princess to do this, but the frustration can come from a shadow on the wall disturbing Princess, the wrong sounds, the wrong temperature in a room, the wrong feel of her clothes against her skin or a hundred other unknown "things that are wrong".  And as powerless as Princess feels in her world to understand our "normal" world, we feel just as powerless in trying to work out what it is in her world that so upsets her and then how to soothe and settle her.

Water is a great soother - a bath is ideal.  If a DVD is on, take it off and put some music on.  Physically remove Princess from the environment she is in and get her out into the fresh air.  This is easier said than done, as she is as strong as an ox and stubborn, as well as being way taller than me, her 156cm Mum.  But we can usually soothe her and bring some order back into her world - and in so doing, back into our world too.

More later.

Sunday, August 1, 2010

Sunday August 1 2010

The sun was out today and we planned to go for a bike ride - Princess has her own adult trike which she absolutely loves to be on.  Just as we were about to head out poor Princess was sick....that put an end to that idea!  Apart from that, I had been struggling with a sore throat all day and trying to clean the house, so was not too upset when we were housebound instead.  House cleaning is not one of my strong points and by the time the weekend comes the place is usually a mess - washing piled up, floors dirty, dust everywhere.  I always feel as though I am going around in circles trying to get on top of things.

Princess watched DVDs most of the day while I tried to clean up.  This is a point of guilt for me - how many should I let my girl watch???  She either watches DVDs or listens to music but both of them are passive activities.  Lately she has been getting me up to dance with her, which is a big step forward as human interaction is always something that people with autism usually find challenging. 

So our weekend draws to a close and it's back to school for the girls and work for me tomorrow.  Princess will be staying home if she is sick again.  Her Dad is due to go to hospital tomorrow evening so don't really know if he will be caring for her or I will have to take a day off.  I am so tired of the whole full-time work thing but right now I don't really have a choice as my husband can't work due to a back injury.  His op is in September so possibly things will pick up after that for us as a family.  Right now we are all basically hanging by a thread as our family has been split apart by my husband's injury.  He cannot do much at all.  Therefore, family togetherness is pretty much a thing of the past.  However, as an optimist I always say to myself "Everything is temporary" and I thank God because I know this misery will pass and we will come out of  it all the stronger.

More later.

Saturday, July 31, 2010

First post July 31

Well today is the day I begin my blog.  I have been thinking about this for quite awhile, thinking how much I need to just put my thoughts down on paper to try to clear out some of the fog in my mind.  Life with a teenage autistic daughter!!! Where do I begin?

OK, here goes....I'm a 49 year old Mum of two daughters.  My husband John is 51.  Princess is our oldest daughter, she is autistic with an intellectual disability as well.  I often think of it as the double whammy.  It means that she is non-verbal but that has never stopped her from getting what she needs and getting her point across!  Not too many people who meet this being of light would forget her in a hurry.  She is tall, graceful like a swan, beautiful big blue eyes, absolutely gorgeous.  She is a body inhabited by a spirit that is full of richness and full of challenges.  I often think she is not completely of this world but lives in two places at once...the autistic world and the so-called "normal" world.  Our other daughter Honeybee is 12.  Her life is full of the challenge living with an autistic sibling brings.  She is feisty, kindhearted, creative, loves to read.  She also is very embarrassed at times by having Princess as her sister, especially in public.

Today being Saturday was our supermarket shopping day.  Princess pushes the trolley (usually very fast) and I have to try to get everything that I need into it very fast too!!! Often there is a quick detour so Princess can give an unsuspecting soul a hug.  People are incredibly receptive to this, even though we are trying to teach Princess that you don't hug strangers.  We live in a small township and most people know Princess but those that don't know her are often the huggees!!! Honeybee usually spends her time in the supermarket avoiding both myself and Princess in an aisle as far away as possible from us....

We got to the checkout in record time and with all the shopping we needed.  Bad case of wind from Princess at the checkout, enough to bring tears to my eyes....the checkout girl must have noticed but said nothing, bless her.  Thank God Princess wanted to be quick to get the items out of the trolley onto the checkout.  My stress levels had peaked by about now as my next challenge was to make sure Princess stayed with Honeybee and me until we can get all the shopping bags back in the trolley and out to the car - usually she is dying to get back into the supermarket. 

Mission accomplished!!!  Now for the drive home....Princess loves to touch my shoulder and I have to work out what my response will be..usually it's "Go to K-Mart in a couple of weeks" or just "Going home now" is enough to stop the touch.  Today it was "Get your hand off my shoulder Princess!" I was just wanting to get home and unpack the shopping.  And then have a nap.

More next time.