Emotions

As a parent of an ASD child, I go through a myriad of emotions. Sometimes I feel confident and strong, ready to face anything that comes my way and sometimes I just get so worried and I break down.

This morning was one of those not-so-good instances... I got so worried, paranoid and I was feeling really, really down. I've read that 4 in 10 autistic children don't ever talk and that statistic just got to me. I was so worried at the fact that Rayyan would be one of the 4. I have accepted the fact that he is ASD, I have accepted his different traits but if 6 out of 10 autistic children can talk, I really, really wish that Rayyan would be one of them. It would make life so much easier for him. He is going through so much as it is so I really hope that God would just lighten his burden.

Btw, my VP approached me this morning and asked if everything is alright at home. Maybe I was looking really down which was why she approached me in the first place. I said, yes, everything is fine but inside I was just screaming, Noooo!! Things are not fine!!

I made my way to my workstation and really felt like crying but told myself to be strong, I have invigilation in 15 mins! I told myself that maybe I will have a good cry later at night, on the comfort of my bed, with a big box of tissue next to me... Yes, I would feel so much better then.. So what I am trying to say is that it is alright to feel sad and worried, we are entitled to feel that way. It is more worrying if we try to be strong all the time!

At the end of the day, I know that after a good cry, I would pick up where I left off and continue the journey with my boy....

Louder Than Words

It's a book about faith. It's the story of a mother who believed anything was possible and never stopped looking for answers. There's still many questions out there that need answering but I want moms out there to have a little bit of comfort knowing I will be searching for these answers so we could someday watch out children lead the lives we dreamed they would have....."

Just finished reading this inspiring book. I love the open, candid way she wrote her experiences and feelings. I admire the things she did for her son, Evan. She's a real go-getter and will never let anything get in the way of improving her son's condition. There're very useful tips in the book too but what I love most about it is that it just inspires me to do more for Rayyan and never to lose hope. Thanks Jenny!

An extract from the book..

I started to feel a shift in me. I was accepting what was and not hating the world for what should have been. I came to my own conclusion - that acceptance does not mean giving up. Nothing was going to stop me from pulling Evan out of this window. I just simply loved him and was proud of who he was no matter what. I found myself loving his flapping, his tiptoe walking, his love of fans, door hinges, and escalators. I thought, "So what, if he grows out of it someday, great; if not, he comes here after the prom with his girlfriend and they ride escalators till the sun comes up. Evan is perfect."

Bibik

She has been such a great help to me. She helps me to fulfill Rayyan's physical and emotional needs and I don't know what I would have done without her!! She is very efficient and is receptive to learning new things. What I like most about her is that she follows instructions very well and can get pretty strict. When sometimes I get soft or lax with Rayyan, she is the one who gives me reminders! lol

But most importantly, she treats Rayyan like her own son and showers him with so much love. Thank you once again Mita Sumanti! We are so lucky to have you! Happy 28th Birthday!! Errr.. don't go back to Indonesia can???? hehe

And ain't she lucky? We usually have only one cake and she had two!! lol

Dr Seuss

Rayyan loves Dr Seuss' books!!! I have a couple of them in my iphone and some of his favourites are 'Dr Seuss's ABC' and 'The Cat In The Hat'. I don't think he understands them but isn't the way everything rhymes just so cool??!!

Today I downloaded 'Oh, the places you'll go' and after I read the book together with Rayyan, I must say that I am totally in love with the book! Not only does it rhyme, there're great advices embedded in it too!! I really hope I can discuss with Rayyan about the book one day :)

Oh! The Places You’ll Go! by the incomparable Dr. Seuss Congratulations! Today is your day. You’re off to Great Places! You’re off and away! You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You’re on your own. And you know what you know. And YOU are the guy who’ll decide where to go. You’ll look up and down streets. Look’em over with care. About some you will say, “I don’t choose to go there.” With your head full of brains and your shoes full of feet, you’re too smart to go down a not-so-good street. And you may not find any you’ll want to go down. In that case, of course, you’ll head straight out of town. It’s opener there in the wide open air. Out there things can happen and frequently do to people as brainy and footsy as you. And when things start to happen, don’t worry. Don’t stew. Just go right along. You’ll start happening too. Oh! The Places You’ll Go! You’ll be on your way up! You’ll be seeing great sights! You’ll join the high fliers who soar to high heights. You won’t lag behind, because you’ll have the speed. You’ll pass the whole gang and you’ll soon take the lead. Wherever you fly, you’ll be best of the best. Wherever you go, you will top all the rest. Except when you don’t. Because, sometimes, you won’t. I’m sorry to say so but, sadly, it’s true that Bang-ups and Hang-ups can happen to you. You can get all hung up in a prickle-ly perch. And your gang will fly on. You’ll be left in a Lurch. You’ll come down from the Lurch with an unpleasant bump. And the chances are, then, that you’ll be in a Slump. And when you’re in a Slump, you’re not in for much fun. Un-slumping yourself is not easily done. You will come to a place where the streets are not marked. Some windows are lighted. But mostly they’re darked. A place you could sprain both your elbow and chin! Do you dare to stay out? Do you dare to go in? How much can you lose? How much can you win? And if you go in, should you turn left or right…or right-and-three-quarters? Or, maybe, not quite? Or go around back and sneak in from behind? Simple it’s not, I’m afraid you will find, for a mind-maker-upper to make up his mind. You can get so confused that you’ll start in to race down long wiggled roads at a break-necking pace and grind on for miles across weirdish wild space, headed, I fear, toward a most useless place. The Waiting Place…for people just waiting. Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting around for a Yes or No or waiting for their hair to grow. Everyone is just waiting. Waiting for the fish to bite or waiting for wind to fly a kite or waiting around for Friday night or waiting, perhaps, for their Uncle Jake or a pot to boil, or a Better Break or a string of pearls, or a pair of pants or a wig with curls, or Another Chance. Everyone is just waiting. No! That’s not for you! Somehow you’ll escape all that waiting and staying. You’ll find the bright places where Boom Bands are playing. With banner flip-flapping, once more you’ll ride high! Ready for anything under the sky. Ready because you’re that kind of a guy! Oh, the places you’ll go! There is fun to be done! There are points to be scored. There are games to be won. And the magical things you can do with that ball will make you the winning-est winner of all. Fame! You’ll be famous as famous can be, with the whole wide world watching you win on TV. Except when they don’t. Because, sometimes, they won’t. I’m afraid that some times you’ll play lonely games too. Games you can’t win ‘cause you’ll play against you. All Alone! Whether you like it or not, Alone will be something you’ll be quite a lot. And when you’re alone, there’s a very good chance you’ll meet things that scare you right out of your pants. There are some, down the road between hither and yon, that can scare you so much you won’t want to go on. But on you will go though the weather be foul. On you will go though your enemies prowl. On you will go though the Hakken-Kraks howl. Onward up many a frightening creek, though your arms may get sore and your sneakers may leak. On and on you will hike. And I know you’ll hike far and face up to your problems whatever they are. You’ll get mixed up, of course, as you already know. You’ll get mixed up with many strange birds as you go. So be sure when you step. Step with care and great tact and remember that Life’s a Great Balancing Act. Just never forget to be dexterous and deft. And never mix up your right foot with your left. And will you succeed? Yes! You will, indeed! (98 and ¾ percent guaranteed.) Kid, you’ll move mountains! So…be your name Buxbaum or Bixby or Bray or Mordecai Ale Van Allen O’Shea, you’re off to Great Places! Today is your day! Your mountain is waiting. So…get on your way!

Teacher Teacher

We decided to move our teaching sessions to a 'classroom setting' so that he will be more familiar with this kind of setting.

My main objective was actually for him to learn to be more focused in a classroom setting. His attention was off now and then. He was looking everywhere except me or the board! I need to constantly grab his attention by calling his name or tapping the board. He needs to improve in this area.

I also wanted him to sit on his own more independently. When he's in school, he always have somebody behind him. For our first session yesterday, my helper still had to be with him or else, he will be running or jumping around. Sometimes in school, he will actually start lying down on the floor! This definitely needs to be improved!

Those things aside, we had FUN yesterday! And I got to do what I do best! lol

All Wrapped Up!

If you remember my last post regarding Rayyan's haircut sessions, you will also remember that our next goal is actually for him to get wrapped with the plastic sheet while having his haircut.

Earlier, we tried doing that and we are happy that Rayyan did not throw any tantrums or wasn't shouting and crying away at all!!!! He was a bit unhappy when we first brought him to the hair salon and whined a bit but was ok after that.

When we started to wrap him with the plastic sheet, he seemed uncomfortable at first but with much coaxing and praises, he started to relax and was fine throughout the whole haircut!

We are so very proud of him! 3 cheers for Rayyan!

Hip hip hurray!!

Hip hip hurray!!

Hip hip hurray!!

Here's our boy sitting on his own and all wrapped up with the plastic sheet :D

Link

Some parents have requested for the link to the blog that I mentioned in my previous post so here it is....

http://our-unique-raiyan.blogspot.com/

Sadly, the writer has stopped writing because her son has made so much progress that he is now just like any other typical kid!! Isn't that wonderful news?!!!!

It is indeed a very in-depth, interesting and motivating blog. Enjoy!

Not Enough

I stumbled across a blog today which is truly inspirational. It is written by a mother of an ASD child from Brunei. Coincidentally, the boy's name is Raiyan (which was actually why I was attracted to the blog in the first place).

Anyway, the boy is brilliant and is making wonderful progress. He was diagnosed at age 4 years 7 months. By the time, he was 3 and a half, he was reading 6B of the Peter and Jane books, he could count up to 50, completely mastered the skills of using a computer, including playing games and searching for his favourite things on Google, he could write out all alphabets and numbers and he can practically name all the animals that exist or used to exist in this world!! After he was diagnosed, he was immediately placed on 13 hours/week sessions of ABA. He made tremendous progress after ABA. His play skills, communication skills and social skills improved by leaps and bounds. I was in awe of what he was able to accomplish in just a short period of time. I applaud the mother's patience and tireless dedication.

Spurred after reading her posts, I want to do so much more for Rayyan. I want to play more with him, I want to have more teaching sessions with him, I want to communicate more with him. I can't afford ABA but I can teach him on my own. Actually, I must admit I was actually feeling so, so guilty after reading the blog. No doubt, each child is different and I can't compare my child with others but I feel that I am just not doing enough. I was too busy with work, it left me exhausted every day. Because of that, I used that as an excuse to leave the teaching to my helper. In the evening, after an exhausting day, I told myself I need to rest and immerse myself in the tv or the internet, busy checking my Facebook account or other unimportant stuffs.

That precious time could have been used to teach Rayyan, for the betterment of Rayyan. Time is precious, time doesn't wait for us and I am just wasting time doing things that are insignificant. Sometimes I feel that I am running away from it all, running away from the fact that my son is ASD and needs me more than anything else. I need to find my focus. I need to get on the right track. I need to help Rayyan.

Intervention Cum Education (ICE) Programme- Progress Report

Rayyan has just finished his second cycle of the ICE Programme at Presbyterian Community Services. Met the teacher about a week ago to discuss his progress at the centre. I am very happy to hear that he has made commendable progress there. Indeed, I can see that he is happier and more comfortable in this centre. When he first started, he would cry or whine whenever he reached the centre but now, he would go in willingly. He is also more responsive and more aware of his surroundings.

Here's a summary of the report.

Cognitive Skills

Rayyan is able to place round, square, and triangular forms in reversed form board. He has been observed to experiment with some materials and objects. Rayyan is beginning to anticipate parts of a rhyme or song by doing the actions before the words. He is beginning to sort at least 3 different kinds of objects by size and he is also beginning to sort 10 or more objects into 2 groups. Rayyan is beginning to play adult roles with toys and beginning to imitate block trains.

Although I think he can do so much more than the 3 shapes mentioned, I am so happy to hear that he is beginning to play adult roles with toys. His teacher mentioned that he loves going to the kitchen corner and stir pots and pans. :D

I have always been very concerned with his play skills so that is wonderful progress!

Expressive Language

Rayyan is able to make at least 3 requests (through gestures) and able to greet 3 different people appropriately (through gestures). He is beginning to identify a variety of sounds by naming and pointing to the objects that produced them.

Receptive Language

Rayyan is able to look when told to look for something. He is able to point to 10 or more pictures of familiar objects and follow 5 different 1-step commands.

So happy to hear that his expressive and receptive language is getting better. And I am so glad to hear that he is friendlier towards people and don't shun away from them :D

Gross Motor Skills

Rayyan is able to walk up and kick a stationary ball. He is able to roll a ball back & forth in a game while in a sitting position. Rayyan is beginning to walk forward on the balancing beam using hands to aid his balance. He is beginning to catch a bounced ball by hugging it to his body.

Fine Motor Skills

Rayyan is able to build a 12-block tower. He is beginning to reach and turn doorknobs. He is also beginning to copy vertical and horizontal lines.

Rayyan hates WRITING! He will whine and cry whenever we present him with the writing task. Good to hear that he is copying lines in school! Yay!!

Self-Help Skills

When there is a need for toileting and when provided with toileting facilities familiar to him, Rayyan is beginning to remove socks. He is beginning to dry hands without assistance.

Even though he is able to request that he wants to go to the toilet when he's at home, he is still wearing pull-ups to school. His next goal will be to improve his toileting skills in school.

Social and Emotional Development

When provided with the appropriate stimuli or social situation, Rayyan is able to show a strong sense of self as an individual as evidenced by saying 'no' to an adult's request. He is able to exhibit signs of developing independence by having the attitude that 'I can do myself'. Rayyan is beginning to imitate another child's actions. He is beginning to engage in auto symbolic play - for example pretend to sleep, eat, or drink from a cup. Rayyan is beginning to use blocks or other objects to build simple enclosures such as pens or yards.

Really wonderful to hear that he is developing as an individual and developing independence as well. Gooo Rayyan!

I would like to thank his ICE teacher, Ms Susi and all the teachers at the centre for trying their best to help our little boy and accommodating to his learning needs. Thank you also to all the kiddos in the centre for being so tolerant and understanding. May they grow up to be empathetic citizens who understand the differences in others.

For a boy who detested being involved in a school setting, I am so elated at the progress he is making. We are so glad that he is embracing and acknowledging the fact that school is a part of his life. We are so proud of him for trying his best to adapt to this. Kudos to you baby! We are so proud of you and may you continue to make progress and conquer your fears. Amin. :D

Action Words

Nowadays, we focus a lot on 'action words' with Rayyan, getting him to do the actions or pointing to the pictures depicting the different actions.

These are some of the 'action words' that he's familiar with :

1) run

2) jump

3) dance

4) kick

5) eat

6) drink

7) bathe

8) nod

9) shake head

10)point

11) arms up

12) read book

13) open

14) close

15) keep

16) wave

17) kiss :)

We are still adding to this repertoire of words and although we know that he is way behind kids his age, we are still very proud of him.

Hopefully his word bank will multiply faster now :)