Thread

Topic: " My Little Emma: A story by her older sister, Sally "

By:Sally

My little sister, Emma, was born on 2nd February, 1988, and although she was smaller than most babies and needed more attention that me, I never realised there was much more to be learned about Emma in the future. It wasn't until Emma got bigger and wasn't reaching her milestones that we knew something was wrong  Emma had a disability. At three, Emma hadn't learnt to walk, and at five, she still couldn't talk, which began to leave my parents very worried. Little Emma was taken to many various doctors and specialists, but all they could tell us was that Emma did have developmental delays, suffered communication problems, was very small for her age, and has an intellectual disability, which we already knew. We only found out a few years ago what was truly behind Emma's condition she was diagnosed with Autism Spectrum Disorder, which explained why Emma had trouble with communication and understanding. As little Emma was very small, and was not growing to the average height for her age, she was prescribed with growth hormone injections for 7 years right up until she was 14 years of age, and she used sign language to help with communication until she was 8 years of age. She does not require growth hormones anymore, and although she is still small, she is much closer to the average height for her age and is much healthier too. Emma can also talk a lot more now, not requiring the aid of sign language half as much as she used to, and as she reaches her 17th year, some people have commented that Emma has a slight likeness to Penelope Cruz! Although 17 now, Emma's condition still challenges her with difficulties other people would not usually need to worry about, like tolerance, patience, and most importantly, understanding. Emma can also get frustrated if we don't understand what she is trying to tell us, which can sometimes lead her to tears.In our world, it is easy to understand that actors on TV shows are not really crying, they are just acting, but in poor Emma's world, she really thinks they are crying and in pain, which upsets Emma a lot, causing her to scream and cry too, sometimes throwing things. We are restricted in the places Emma can visit. She cannot tolerate crowds, where little children screaming and crying, often causing a scene. Strangers stare at my family, thinking my parents cannot control their own child. I am very protective of my sister, and I really hate it when people comment about Emma or stare at her.

Emma also likes to stick to routine, and if anything changes that routine, (for instance, Dad coming home from work at 5:00 instead of the usual time of 6:00) Emma will scream and run out of the room and sometimes cry, because she is confused and doesn't understand why Dad didn't come home at normal time. I sometimes feel guilty when I come home from TAFE, as my class times are all over the place (unlike school). Once, when I came home late in the evening to see Emma, she just looked at me, got very overwhelmed, ran out of the room and started crying. I know it's not technically my fault, but I just felt so guilt that I made her cry as soon as I opened the front door.

 

Mum looks after Emma approximately 90percent of the time, which can be very exhausting for her. When Emma had her triple 6-week back operation in 2001 (she had Scoliosis), mum was there for Emma day and night, only coming home about once to change clothes and get some rest. Emma does need constant supervision, and Mum was as determined to be Emma's side, as Emma was determined to get better. I don't know how, but Emma did get through it, and now her back is much better than it used to be. As it is often very stressful for mum, I try to help out as much as I can by supervising for about half an hour or so. It isn't much, but mum is always grateful for it.

 

However, Emma has had the opportunity of going on great, fun-filled excursions with her school, Glenallen (which she enrolled at in 1994), and her youth group. These include places such as the Melbourne Zoo, Healesville Sanctuary, Melbourne Aquarium, Imax theatre and the Giant Earthworm, which was in Gippsland. Emma also likes going shopping early morning with mum and dad to do groceries, and enjoys visiting the tranquil, serene environments of the Botanic Gardens and watching the ducks. Through Emma's school, the Police Rock band has visited a number of times, and even Don Spencer once came down to perform at the school, which Emma loved. Just a few years ago, mum and dad took Emma to a Wiggles Concert, and then after the show, Emma actually got to meet them backstage and get a photo taken with them. Emma was so happy and shocked she didn't know what to say!

 

Although Emma talks more now, not everything she does can be explained through speech. However, there are little things that Emma does that shows what her mood is and how she is feeling. Grinding her teeth and rubbing her hands together means she's concentrating, humming softly means she's relaxed, and flapping her arms about means she's excited or too overwhelmed. When Emma is sad, she gets anxious, confused and overwhelmed, often saying a number of words that are all jumbled up. Repetition is another important factor for Emma, as she likes me to read her a list of things over and over again, or she will rewind a certain scene on a video tape a number of times. Unfortunately, when she's distressed, her need for repetition gets even worse.

 

Emma is also a girl who likes to do two or more things at once, for example, listening to three different radios at once, or watching a video while using the computer in the same room, as well as holding on to a radio! She amazes us with the different things she does.

 

She is also very good on the computer, and can remember how to do things independently after only showing her once. Emma also has a brilliant memory, (such as remembering all the tracks on a compilation CD, and reciting the exact script and dialogue of a whole Disney movie)! She shows me on the calendar what she is going to do every day. She's also looking forward to 2006!

 

She also has the most gorgeous and infectious laugh, often copying things mum and I say around the dinner table and then laughing to herself. My friends have been really good around Emma, as she's so friendly that she just runs up to them, shakes their hand and says "hello" as if she's known them for years! Most of my friends say "She's so cute". Emma also loves music, especially jazz! When she first gets home from school, she'll often say "Encarta" with a smile on her face, looking forward to using MS Encarta on her computer.

 

My mum remembers the day that Emma said her first word which changed our lives forever, especially Emma's! She was in the bath one day, and mum asked her if she'd like some more bubbles or not. Waiting for Emma to sign, Emma shocked us all by replying "more". I've never heard my sister say anything until that day, and my mum couldn't have been more delighted and proud of our little Emma. That day will be forever a memory. She was 7 years old that year, and from that year on Emma's vocabulary got better and better, surprising us every year with new words and phrases, even now saying sentences! Often when Emma wants to tell us what she is going to do today, she will say it in a list form (et tea first, and then ice-cream and then videos and then bath and then computer, ok)? We think it's cute. Emma's often more organised that I am half the time!

 

The one thing that Emma doesn't worry about that most teenagers do is self-esteem. Emma doesn't care what other people think and isn't afraid to outstare people if someone is staring at her. My sister is one of the most accepting people I know, and through Emma I have learnt to be more accepting myself. She is very confident and laid back, just like her dad, and is growing up to be a caring, well-mannered young lady, just like her mother.

 

I never expected Emma to excel this far. She is a fighter, and a true inspiration to us all, and if it wasn't for such a fantastic school (Thank-you so much, Glenallen), and for determined, hard working loving parents (Thank-you Mum and Dad, your tireless work towards raising Emma and helping her through each and every day is more than I can imagine), and to the carers, respite houses, and youth groups out there who have enabled my mum and dad to have a break (Thank-you, thank you all so much), I don't know where we would all be today. But the person who I really want to thank the most is Emma. Emma, you have done the most work out of us all, and have tried so hard and been through so much. I know we have had our tough times, but I just want to let you know that we all love you very much, and there is no one else like you out there, little Emma. You are unique. I am just so proud to have you for a sister, Emma.

My brother goes to GlenAllen too and I think it is the most wonderful place in the world! My family owes so much to that school.

What a great story, I was really touched. Thanks for sharing so much.

That was a great story - so inspiring  thanx! U and Emma are inspirations to us all, keep going strong.