1 week ago, we went to a little girl’s birthday party. Previously, Maya had the most intense fear of birthday candles. Birthday parties were always a nightmare, she would cry and scream at the crowds. Whether it’s her own birthday or going to other children’s birthday parties. Previously, Maya had never blown out the candles on her own birthday cake, ever. Last week, for the very first time in her life, she blew out the candles on the cake on behalf of the birthday girl.
Last year, Maya couldn’t even make a simple 1 word request. She would instead cry or tantrum and we would have to figure out what it was she wanted. The progress in 2008 was very slow. She eventually managed to make 2 word requests. “More milk”, “Chocolate cookies” and “Daddy fix” by the end of last year. However, this year, her language and communication skills have made a huge leap. She can now talk in 9 word sentences. She can talk in 3 back to back sentences. And she has proper chats with us with back and forth conversation. Her pronounciation and articulation is at the level of a 7 year old. She can articulate her needs and feelings at age appropriate level. She made 1 1/2 years progress in speech within 7 months, her therapists, doctors and us are all amazed.
She has lost many of the stims and behaviors typically seen when she was initially diagnosed with Autism. She no longer walks on tip toes, the echolalia has stopped and she has very few tantrums. She is now able to tolerate loud noises and strange places. There is less fear of strangers and she is able to play with other children. We can take her to other people’s houses or to social events without her having a complete meltdown. She is able to concentrate and finish a task. She is no longer hyperactive. When going out, she doesn’t run away but stays close to me. Some of the behaviors relating to sensory processing issues have reduced, she no longer mouths and lick objects. She can also tolerate loud noises such as a busy airport or the sound of construction work.
Maya’s sweet nature is now showing through. She is very polite and has beautiful manners. She says please and thank you and is very affectionate. Maya is gentle and caring. She can now have short conversations on the telephone. She can grip a pencil properly now and able to make age appropriate drawings. She is currently learning how to write the alphabet and learning to read. She can spell and write her name. She can count to 100. She learnt how to drink from a straw 4 months ago and is now able to feed herself with a spoon. She can now hold a cup and drink by herself without spilling it. We finally managed to toilet train her when she turned 4 years old. And she requests nicely to go to the bathroom and so far has only had 2 accidents. After a life-long phobia, she can now tolerate taking medicine from a syringe.
She has learnt how to play simple games on the computer and able to use the keyboard and mouse properly. She has learnt many card games such as Uno, Snap and Happy Families. Uno is her favourite game and she’s pretty good at it too. She can play simple board games too. Maya now enjoys playing with her sister Yasmin. These days, the 2 girls are happy to play together and make up little games to play. She has learnt to appreciate and understand so much more now; previously when we went to the zoo, she would be concentrating hard on the toy she’s holding and not aware of the animals in front of her. Now, she loves going to the zoo, night safari, butterfly park and bird parks. Her eye contact previously was fleeting, it was very hard to get her attention. She had a very short attention span and seemed to be lost in her own world. Her awareness and cognition has improved immensely. Previously we’d be calling her name and she would not respond. Now, whenever we call her, she says “Yes, Mummy” and looks us in the eye.
She has some very girly interests now; princesses, ponies, fairies, mermaids, ice skating, baking cookies, castles, flower gardens, tea parties, wedding gowns and other pink sparkly things are her absolute favorites.
We struggled with daily chores like getting her dressed, wearing shoes, going to school and learning to toilet-train. It was a struggle every day getting her dressed. She would tantrum whenever she had to wear clothes. She also had an obsession with ballet tutus and would insist wearing it every day. She then developed a fancy to wearing princessy dresses and would wear it even to bed. She preferred wearing sleeveless string tops and skirts. She hated wearing pyjamas. Now she wears only the softest prettiest nightgowns I can buy.
Certain key supplements and biomedical treatment made a big impact in certain behaviors and skills. Once we started her on TMG in October, she started tolerating wearing tshirts and pants without any fuss at all. TMG also helped her with toilet training. Her language and cognition made the biggest progress the moment we started her on MB12 shots in July 2009. She started making 1 word requests the first week of starting the GFCF diet. Her hyperactivity and constant climbing and jumping stopped once we started her on anti-fungal treatment. She used to scratch her bottom and bite her toenails, that stopped once we addressed the skin and toe fungal infections.
She used to cry every time we dropped her off at school for the first 3 months. Now, she absolutely loves school. Music class is her favourite subject and she loves doing Arts and Crafts. Previously, going out with her was an ordeal. Now, she is a joy to be with and behaves well. We can now take her shopping, to friends house and to many other places with very little stress.
Recently I asked her what she did in school. She replied “I played Uno!” What else did you do I asked. “I did Arts and Crafts. And music class with Ms Phoebe!” What did you sing in music class? “Hannah Montana! Hannah Montana has an acoustic guitar! Miley Cyrus is a girl. ” Then I asked what she had for lunch. “I eat chicken…… not sausages.” When I checked with her teacher the next day, the teacher confirmed that all of the above were correct. The teacher also said that Maya had chicken f
or lunch yesterday, but she had sausages the previous day.
We baked christmas cookies and cakes recently. Maya said “Mummy, what are you cooking? You’re a good chef Mummy. I am a waiter!” She loves helping me in the kitchen. She helps to stir the batter, brush margerine on the cake tins, places the muffin paper cups into the tin, spoons the batter into the cups. Then she gets to decorate them anyway she likes. There’s lots of rainbow sprinkles, silver balls, sugar flowers and chocolate buttons.
A couple of weeks ago, Paul and I were in our room. Maya came in dressed in her current favorite white dress and wearing a little wedding veil on her head. She said “Look mummy, I’m a wedding girl!” I asked her who she wanted to marry, is it Prince Charming? And Maya said “No, I’m going to marry Daddy!”. I had a sudden flash forward then; I could picture in my mind Maya walking down the aisle and getting married. Someday, my little girl will grow up and fall in love, get married, have children of her own and lead a happy life. We are very proud of her indeed.
When we first received Maya’s diagnosis, we despaired that we may not be able to help our child. Our main concern was the mistaken belief that Malaysia may not have the resources and services compared to other developed countries. We felt pressured to move to Australia, the UK or USA. It took a little bit more effort, but we managed to overcome any challenges that came our way. Being a Malaysian and living in Malaysia did not stop me from helping my child. It wasn’t easy, but nothing in Autism is easy. Malaysia Boleh!
A combination of intensive biomedical as well as intensive ABA has shown us tremendous results. When we first started ABA, we were warned that ABA will turn our child into a robot. That her speech and behavior modification will be stilted and robotic. We were told that ABA methods were unnatural, that it was like training a dog. When we first started biomedical interventions, mainstream medical doctors would try to discourage us from it. Claiming that it’s unproven, it’s nonsense, that we’re wasting our money, that it will not help at all. How wrong they are…… We experienced utmost kindness, patience and dedication with our ABA team. ABA has shaped her skills and abilities. Maya’s speech is very natural, she is full of joy and life. She is certainly not a robot. Biomedical treatment has made amazing improvements in Maya’s health and behavior. We would not have achieved such rapid progress with ABA without the help of biomedical treatments. These two interventions complimented each other.
We couldn’t have done this without the help of our hardworking ABA therapists, our DAN doctors and the support of family and friends. Although 2009 has been an incredibly challenging and stressful year, it has also brought us much satisfaction and happiness. We feel that we have our daughter back, that she is no longer lost in Autism. Maya is not yet Recovered from Autism, however we truly believe that soon she will lose the ASD diagnosis. It’s so close I can smell it. We are on the way to Recovery and we hope that next year be filled with more love and joy. Happy New Year!
Spectrum Mum in Malaysia 