There are days when Raiyan feels subdued and tired after coming back from school which I can understand since he’s been working non-stop (with school AND ABA) all morning.
But there are days like these when he just can’t keep still that I wonder if he was fed anything earlier on that makes him sooo hyperactive! If only I can enroll him in gymnastics or something like that!
This is Raiyan achieving another progress milestone, blowing the biggest balloon he's ever blown! With his slight dyspraxia affecting the strength of his jaw muscles, Raiyan found this very difficult to do before but with the tips given by the speech therapist we saw back in March, which included making him drink with a thick straw, his oral movements are getting better.
The one thing I found difficult to explain whilst he was trying to learn to blow the balloon, was to NOT suck back the air that he has already blown. I mean I'm not completely sure if sucking back the air is a bad thing to do but something involving directly breathing in carbon dioxide was something I just couldn't let go off.
I think it was to do with a number of things that Raiyan just couldn't get the concept of what I was telling him
- difficulty with following a negative instruction
- not knowing what "air" is as it wasn't a visual thing he could see
- not understanding what "sucking" is
-not fully understanding "before" and "after" (cause I kept saying, you take the balloon out of your mouth before you let go of the balloon and you can only blow into the balloon after you take a breath etc etc).
In the end I just had to teach him to blow the balloon on a step by step basis (though I think he was a bit upset with him not being able to freely blow as how he wants it!).
First you blow, then shut the balloon, then blow, then shut etc etc..
I'm still not sure whether it's ok to suck back the air? If it is, then I don't have to be so overly concerned! Help! Any comments are welcomed!
Raiyan’s progress has been coming along really well. What we have been working on the past 2 weeks:
1. Auditory Memory: Here we are training Raiyan to really listen to what we are saying that then later on ask questions to see if he can recall what he heard. A few months ago, we checked his auditory memory by making him remember a sequence of things so this is definitely a vast improvement from then because he actually understands a story we tell him and getting him to remember. An example of a short story would be “Meg goes to the grocery store. She buys apples and bananas and pays for them at the cashier.” Then we ask Raiyan “Who went to the grocery store” or “Where did Meg go?” and “what did Meg buy?” and “who does she pay to?”, all of which Raiyan can answer!
2. Opposites: This one we are merely revising because he has been sporadically doing opposites all of these months so it’s a matter of consolidating all the previous ones he has learnt and to make his knowledge of them solid, which they are! He even knows “distinct” and “blurred”!
3. Following directions conditionally: On top of making Raiyan listen carefully to instructions, we are also making it one step harder by making him do a follow up action if what we are saying is correct. For example, we tell him “Raiyan, if you are wearing a blue shirt, rub your nose”. Of course, if he is wearing blue, it would be correct for him to touch his nose. But he didn’t quite get this so easily because even when he was wearing red, he still touched his nose! Well you can’t really blame him because all this time all we’ve done is tell him to do something! Hehe.. but he’s gotten the hang of this already and in fact, he’s started to tell US conditional instructions too!!
4. Imitates peers: Jo would bring a fellow classmate to accompany Raiyan during some therapy sessions and make him do or say certain things that Raiyan has to follow. So far, Raiyan can easily follow gross motor movements and actions but is still working on following verbal responses.
5. Comprehension: This is a follow on from item 1 above, because we would make Raiyan hear a story with a corresponding cartoon illustration and then follow instructions we tell him with regards to the picture. Eg. We use a picture of 3 factory workers in a car factory assembly line so after making him recall things from the short story we tell him, we go on to tell him to do things like “draw a line next to the chains holding the door” and “draw a circle around the man holding the paint can”. Notice they are very specific instructions that REALLY need tests his listening skills and auditory memory skills.
6. Visual Discrimination :We use this brilliant book called “1001 Wizard Things to Spot” which is kinda like Wally because they contain very detailed and crowded pictures and you have to spot and count a number of things within the pictures. It’s really good for proposition languages too because when Raiyan can’t immediately spot something, I can say, it’s on top of the shelf, under the bottle, next to the book”.
7. Listening to others’ conversations: Of course we are constantly working hard with the social aspects too so Jeff and I have been making Raiyan sit in and listen to our conversations and then we ask him “what are we talking about?” and ask more detailed questions about our conversations. Raiyan tends to then go off and talks about himself so we have to try to prevent that and make sure he listens to US and talks about US first before he starts talking about himself!
Behaviourally, he’s been really good for quite a while now where most of the time, he complies with what we say but not without some negotiations first. Lately, he has been stimming by putting his fingers in his mouth. I notice he does this as soon as he gets nervous or excited. We don’t really have a big problem with stims so long as they are controlled but with this one, we can’t help worrying about the fact that his hands are usually not clean when he’s sucking away on them. We told Jo and she said that next week, she’ll try and get a book on “germs” and hopefully we can teach him something from that book.
He has also improved with trying new foods and this morning, he finished a egg mayo and tomato ketchup sandwich with no drama at all!
It's amazing how much Raiyan just adores Adik and vice versa. We even joke amongst ourselves and with Jo that when they are together, they are not autistic! Seriously!
They are always soooo excited to see each other that they must always greet each other with a hug..
They are always soooo upset to leave each other and after hugging each other good bye they both mutter to themselves "but I miss you..."
They even have fights and not speak to each other for a while and then make up and say sorry to each other..
One of them actually gets hurt if the other lashes out at the other... like really "hurt".. not the typical "tantrum" cry/scream, but a really sad pitiful "you hurt my feelings" kinda cry..
Since they are in different classes at school, they are constantly in search of one another during break time and will get distressed when the other is not around..
They are forever talking about each other to their parents or caregivers at home..
And the best part is they talk and talk and play and play non-stop when they are with each other..
I am always soo thankful for Raiyan to have found his "soulmate" at this early age because it is just amazing how similar they are in so many ways! They even had the same stims when they were younger!!! They just seem to understand each other sooo well. Sometimes whenever I start getting sad about the fact that Raiyan may not be able to have many friends or form a deep relationship, I'm always comforted with the fact that whatever happens, he will insyaAllah always have Adik..
You can read about Adik's birthday party that we went to just now at the pweshes diaries blog! Happy Birthday darling Adik! We love you soooo much!!
LL society had its committee meeting at our humble abode yesterday as we have quite a number of things on our agenda and plans for the next few months. Of course, it's always lovely to meet and catch up ( I had actually missed the last official society meeting when I was away in Washington) and it was also a fun excuse for the kids to meet up and play! Unfortunately Raiyyan I and Hakeemi had therapy sessions so they weren't able to come.. but Adik and Sarah of course had a complete blast with Raiyan and Alisha!
As some of you may know, we were given a substantial amount of money out of the proceeds of the recent Toyota Classics Event so we decided to give NBT/Toyota as a token of our appreciation, this car that was made completely by our amazing "Lego Builder and Puzzle Solver" Raiyyan Iman Shamsuddin:
If you zoom into the picture, you can read some wonderful facts about this special boy! And of course you can marvel closer at his incredible work! It's simply unbelievable for a mere FIVE year old!
Oh and I can't resist making these if any of our visitors subtly mentions if they will make an appearance! Ugh, Jeff had to insist to put it right in the middle of the dinner table where we were having our meeting and it was soo hard to concentrate! Where at first they were meant for the kids, in the end we realised they were really meant for the big kids cos we almost finished them on our own!
These wonderful kids never fail to put a smile on our faces.. here they are pretending they are on a boat and that's Adik rowing..
And last but not least, here are the committee members working really hard! (Though the ladies do tend to digress here and there.. hehe.. thank god for Jeff to help stray things back into the right direction!!)
Just to share, we are planning for some activities in the next month, including something in conjunction with International Day for Persons with Disabilities and more general awareness events. We are also planning a BIG event in February in collaboration with the Special Education Unit and lastly, we are also planning for the opening of our Learning Ladders Center which will also insyaAllah happen verry soon! Wish us luck! We need all the support we can get!!
After all these months of ABA therapy, we see Raiyan’s personality shine through more and more every day. His temper tantrums are long gone and he now expresses his disappointment by just crying in a tolerable volume and he would always stop after some efforts at negotiations to make him feel better. He is definitely not as fussy as he used to be and really doesn’t mind when things don’t go exactly as planned and he is also more welcoming to trying out new things. He is also very imaginative with his playing now. Just this morning, he was scooping out “vanilla, banana, chocolate and strawberry ice-cream” for everyone using his play-doh set. I point these characteristics out because how Raiyan was before the therapy in these areas are well known to be traits of autism so I guess we proved science right that through the therapy he has been getting, he has come out a more open minded person after overcoming the need for routine and the rigid resistance to change.
In his earlier years and especially since we were oblivious to any suspected disorders, we had always just accepted that it was his personality that made his behavior seem to border OCD! He would insist to change his clothes even if there is a tiny spill on it. When being called over, he would always first put back his toys on the shelf and arrange them neatly before his mind could rest and come to us. He would only eat his meals using the same set of bowls and cutlery. He would insist to have all buttons buttoned up, whether they’re his or others. He would freak out if you change the lyrics to a song he knows. But now, I can honestly say that none of these things bother him anymore. Apart from the constantly messy playroom, of course we are happy to see this happen! It’s such a relief to not have to constantly worry about his strict rules and we are definitely altogether more relaxed generally when compared to before.
There are still some things that others can easily construe as the autism, such as the ego-centricity in that everything has to revolve around him and he doesn’t really get the concept of others around him needing to do the same things as he. There’s still the nonchalant stubbornness that if he decides to not want to do something, he just simply WON’T and there’s hardly any other way around it. Loyal readers of this blog would know that there is still the obsession with the animals and how not a day goes by without animals playing a big role in his life. And much to our astonishment, he has retained much of his amazing memory skills! Just last week, he told Jeff how he wants to go to Jungle Gym and play in the ball pool and on that note, he also told Jeff that the ball pool has 7 different colours altogether in it. Though I don’t remember exactly what the colours were, I can tell you that they were completely random colours (in case you think he just copied off colours from the rainbow) and Jeff checked and Raiyan was basically right about them! Isn’t that bizarre? I’m sure one would still think THAT as an autism trait.
I guess with everyone knowing Raiyan to be autistic, that stereotype will always stick on him, despite everyone close to him being more inclined to think of it as just being HIM and not necessarily the autism. At the same time, with more therapy do I risk him losing more of these so-called “traits” as how he has lost the earlier ones I mentioned? It really is a fine line between trying to help Raiyan flourish in this world independently but at the same time to not take away the very essence of him. Of course I see how terrible it is for anyone to be told to change the very essence of him or her. As how the neurodiversity group has time and time again advocated, it is like others telling you that you’re not good enough for this world as you are and that you have to change for it by possibly sacrificing your own personality.
I still think that no one can ever know where that line lies and no one can ever really be sure as to when it is a trait that you want to try and remove and when is it really a personality that cannot and should not be touched.
All I know is even within myself there are some flaws of me that I’ve always tried to battle and improve and yet have found it to still be stubbornly there. And I do find myself getting slightly mentally disturbed when I am pressured to get rid of it. But that’s not to say that I’m just going to carry on having my flaws and seeing other people get hurt by it. I’m still trying to overcome it as much as I can but at the same time remind myself that God has made me like this and I shouldn’t beat myself up too much about it.
And that is where I try and draw some lessons from to guide me with Raiyan too. Of course I can never be too sure what is an autistic trait and what is really his personality. But so far, with whatever aspects of him that the therapy has worked on, all that matters for me to see is that I have never, in all his life, seen him happier than he is now. At least that much I’m sure of.
When Barack Obama won the election last week, Oprah Winfrey said “Hope Won.” For parents with an autistic child especially, hope plays such a primary role in our lives that I’m sure for some, Obama’s journey and victory resonates a somewhat familiar feeling because we ourselves are firsthand witness of what hope can achieve despite the uphill struggle we have to endure in raising our children.
Both Obama’s campaign and victory could impart so many things that we can learn from and take away positively for us to start looking forward to a brighter future:
He proved that if you are smart and have an in-depth knowledge of what you are doing, you will succeed.
He showed how you can start from the bottom with nothing, but with continuous tireless work, you will get to where you want to be.
In the face of shallow provocation, he exudes patience and a gentle toughness and avoids regrettable acts by maintaining calm and choosing to think things through before taking action.
Those who voted for him demonstrated how very possible it is for people and society to be open to change and to depart from something that is traditionally and comfortably acceptable in their minds.
Both Obama and those who voted for him encouraged others to not fear difference or diversity despite the repeated personal attacks on him by his rivals in an attempt to instill fear of something different or unfamiliar. And throughout, Obama demonstrated an unruffled demeanor and pure classiness when sticking to the issues and choosing to not retaliate even an inch to all of those appalling attacks.
All of the above principles, Obama elegantly encouraged and upheld consistently with the simple message of hope.
On top of the daily struggles we autism parents go through in raising our child(ren), unfortunately I have also found that the autism community unnecessarily contributes more to these heartaches and headaches with its own politics and war of words. It is quite difficult to find an objective point of view on issues that range from the choices of treatment to the risks of vaccination without also having to read judgmental and harsh comments deriving from opinions ping-ponging from one to another. One page out of Obama’s book that we can certainly learn from is to try and understand everyone’s points of view objectively, to listen with an open heart and an open mind and to steer away from jumping into conclusions or making rash decisions and judgments over the actions of another parent or child. We have to learn to set aside our petty disagreements and learn to find and embrace the common ground we have amongst ourselves and that is the hope for a better future for our children.
I have had my fair share of bumps along this pweshes journey and I don’t expect them to stop any time soon. But in a twisted way, I have been thankful for the episodes that I’ve had because it was through those experiences that I have been taught the power of hope and faith that things will in its own way look up and get better, so long as you work hard and carry on with the best of intentions. And Alhamdulillah, hope has blessed us and rewarded us with Raiyan’s amazing progress every single day and with this progress, we are more than happy to share our story and offer the same hope to other parents.
That’s why I think I have been so passionate over Obama’s victory to the extent that I’d get defensive towards skeptics who write me off as another starry eyed “fan”. I passionately and wholeheartedly believe in hope, not only in myself but more so in others. This year alone, I have seen strangers joining together and freely offering empathy and compassion to one another. I have personally seen selfless generous souls making contributions with no apparent benefit to themselves. I have seen people react sensibly in the face of diversity. I’ve seen the pure dedication and tremendous hard work of Raiyan’s therapists in everything they do. And I’m still overwhelmed with the amount of support I’ve received through this humble blog of mine.THAT’S why my enthusiasm for Obama cannot be completely and superficially construed as nothing more than a naïve and easily led fixation because I have learnt from personal experience to truly believe in the powers of hope along with hard work, determination and a pure heart (hati yang ikhlas).
Every day from now , I urge other parents to not stop working, not stop campaigning, not stop learning, and most importantly, not stop hoping. Hope is what helps us get through the tough times but with every sweat and tears that we put into our efforts we also get our shares of joy and appreciation. And from what we see with our very own eyes on every single day and especially on that momentous night of November 4th, indeed, hope CAN and DOES win.
PURPOSE:Hoping for more understanding and less judgment from all. To show the importances of early intervention and an evidence based treatment to help reach the full potential of the child. Offering other parents hope to have faith in the positive progress of their child. Amin.
Raiyan was diagnosed to be on the autism spectrum at 4 years 7 months and was immediately started on 13 hours/week sessions of 1-1 ABA-based behavioral and language development therapy.
Before that, Raiyan could only communicate his needs using 1-2 words at most (though he can narrate a whole song or book easily but with no comprehension of what his words meant), was extremely resistant to change and new situations/environments, was locked in his obsessive world of animals and threw excruciatingly loud tantrums lasting hours or until his wants are eventually met.
Alhamdulillah, now at 6 years old, Raiyan can now have conversations with others, is open to change and new environments with a little cajoling, is constantly engaged in imaginative play including group play with his siblings and other children and best of all, has long kissed the scary tantrums goodbye.
He has also gone beyond our expectations with him now being independent in class (year 2) in a mainstream school.
We have no doubts that Raiyan is where he is now because of the appropriate therapy he has received in the past year and the conscientious hard work and dedication exerted by his caregivers, his therapists and most of all by Raiyan himself.
We are forever thankful and appreciative of the progress Raiyan has made to date and would love to offer other parents the same hope that we have and to work towards the progress they dream for their own child. Amin.