Moving forward

Today was the day of our ABA team meeting. We have a team meeting every month, where all Jaden's team of therapists and supervisor will meet up together with me, discuss about his developments in his sessions and everything that happened during class / after class hours.

The past two team meetings and today's, which means in these three team meetings, I have been hearing praises from his therapists that he is picking up really fast in things they teach him to do and of course, the first few sessions of trying out new things would be tagged along with screams of tortures. Yes, that is how dramatic my little one can get. He would scream as if he is being tortured inside class, whereas its only one of the most normal stuff like pulling or rolling things or touching wet paint. 

Some of you might not understand why we would need Jaden to touch all these things. That is because most of these autistic children has sensory issue and to desensitize him from all these, he has to get use to them, and soon, once he familiarized with them, it might be even a way to make him feel at ease, comfort. It is somewhat similar to how a child would need his pacifier to sleep or bring his bolster wherever he goes. So to desensitize Jaden's sensory issue is very very important.

Jaden has mastered matching things almost perfectly and currently, we are doing a scanning program. The therapist will be holding lets say a balloon in her hands, and then she will ask Jaden to hand her the balloon which is lying on the tables with 5-10 other things. He needs to see what she is holding in order to match the right one on the table and hand it over to her. From there, once he master that, they will just try to say balloon without showing what they are holding and hopefully, by then he will understand which items on the table is the right one that the therapist is asking for.

We will also be including non-identical matching, just to challenge his mind. 

Non-identical + Matching = ? (doesn't make sense right? :p)

Well, its like ex: socks - He has to pick out from 15-20 items on the floor and hand it to his therapists, daddy's, his socks, and baby sock.. just to see if he can match them although they are of different sizes or shapes. As long as he understands the word and maybe, if I am lucky (although I think I am asking too much of him at this very stage) that he understands what are the functions of the things the therapists requested for.

I told my ABA supervisor that the next goal for my son, which I want to set is to let him feed himself independently using spoon. So that he can feed himself his meals. (Self-help program)

So guess this month is the month we are going to do that and we shall see how the reports come back next month when we have our team meeting again. 

Jaden has learn how to zip and unzip, wear and take off pants, wear and take off socks, wipe hands dry and most probably next month, I am going to ask them to teach him how to wear his shirt. 

Potty training is still going on, but we move on up to another level. This time, we bring him to the toiletbowl to pee instead, unless someone is using the toilet, then only he will be allowed to pee inside his potty. So far, he has been doing well. *touch wood I don't jinx it by saying it*

I am supposed to call up this dental clinic and make an appointment to have Jaden's teeth checked out as he has one tartar-ed covered teeth on his upper gum. *sigh* I didn't remember me having to go to the dentist that young.. and the best thing, he ain't eating anything sweet too. So maybe its just tartar and not some decaying tooth . That would be really scary, wouldn't it. Just wondering how he will behave at the clinic but luckily, the dentist is a family friend who totally understands his situation, so I guess I won't have a new person eyeing me badly for a kid who does not sit still. 

Thats about it, his updates for now. :)

MB12 shot

MB12.

Whats that? 

It is actually known as Methyl-B12. You can read all about MB12 and its breakthrough (its not a cure but part of the recovery journey) with autism here. 

That was the first question that ran through my mind when I first heard of it and parents have been raving about how they see positivity from the MB12 shot and boy, was I ever ready to want to give that to Jaden only to be told that he is not ready for it until just recently, in February. 

We had the first MB12 shot administered by Dr E, as I need to know how to inject into that little butt of his and how much to give each time.

The first shot was 0.05ml, and that, unfortunately was done without the numbing cream, so it had Jaden screaming in pain for a little while and shooting us dirty looks as if we had wronged him. 

That, I saw a little side-effect that would have been better off, was hyperactiveness from my already a lil active boy. He was jumping up and down the couch by the time we reached our hotel room.

Getting back to Malaysia, and trying to get my hands on the needles, those really fine insulin kind of needles was pretty confusing when it comes to me trying to convey what I wanted from the pharmacist and she ended up giving me empty syringes instead. *slaps head*

Then a kind mother helped me get a pack of 10s when she was getting hers and finally today, Mr and I administered the shot on Jaden's butt cheek. 

Since I saw hyperactiveness on 0.05ml dosage, I reduced it to 0.02ml this time round. Shall see if it works on Jaden this time, otherwise, we just have to up the dosage. 

To not traumatise the boy, I applied the numbing cream on Jaden 20 minutes before we injected MB12 into his butt cheek. 

The only struggle and cries that came from Jaden was due to not liking me pining him down the bed while the father quickly injected him with MB12. He was alright soon after we let him go so I guess it was not a painful affair although the father was feeling all jittery and scared when he was holding the needle near the struggling little butt cheek. 

So for now, guess its just time for me to monitor him and see if there are any side effects and the second shot should be on Tuesday and then Thursday and then Sunday. 3x a week for now.. if all goes well with 0.02 for today, I shall try to up it to 0.05ml the next round.

Finally ! 

Prothera Ester-C Bio

That is the latest supplement that is added on to Jaden's intake.

Since today is the first day, its hard to tell my his stool performance. Yes, now, almost everything gets determined by how his stool is for the day and well, today reeks of his multivit smell and also mushy a bit diarrhea like, just not watery, thank goodness but still, ain't really something I like out of his ass.

The effects of his B6 is rather very noticeable from his sleep pattern. It seemed like his sleep is not as deep as how it used to be, when I had the hiatus. It sort of affects his father's sleep as well because the boy tends to wake up screaming. As if he had a nightmare or so, but just because he is unable to tell us, we just have to guess and well, some nights comfort him back to sleep, some nights ignoring him, hoping he will tone down his cries and sleep it off or well, the worst case scenario is when he decides that he has to kick someone off the bed, that is when he will receive the stroke of the almighty cane that will instantly put a stop to all the nonsense that was going on. 

What that irks me is the obsessive behavior that seems to hit him back. Knocking on chairs, opening and closing of the door and collecting things and putting them all on the bed. Its getting to the extend that is disturbing the norm of life such as having to have to fight for my own space on bed. What am I saying here? OF course, I always win the fight although I would prefer it not to be this way.

They suspect that his wrist strength has grown stronger, and that is why he now knows how to twist and turn the door knob to open and close the door. 

I always thought Ester-C was just like any other vitamin C and that Jaden needs to have them in him as sometimes he tends to miss out on his fruits and veges and there is so much vits in those food that might not be what his body actually needs. We need more! So Ester-C is the answer to our dilemma of making sure he is fully Vit-C certified! =)

Jaden is taking the Prothera brand -Prothera Ester-C Bio. The bio should stand for bioflavonoids. Whats that?? yea, same question as I had. 

Turns out that Bioflavonoids are:-

"Bioflavonoids are reported to have numerous health benefits. They are the natural pigments in fruits and vegetables.Researchers have reported over eight hundred different bioflavonoids. Most of these are the yellow pigments found in citrus fruit as well as other fruits and vegetables, these are referred to as flavonoids.

Some researchers believe that bioflavonoids help maintain capillaries. Capillaries are microscopic blood vessels that allow the oxygen, hormones, nutrients, and antibodies to pass from the body's bloodstream to individual cells. If a capillary's walls are too fragile they will allow blood to drain out of the vessels and into the cells. The result of this is easy bruising, brain and retinal hemorrhages, bleeding gums and other abnormalities.

Bioflavonoids also in recent studies have been shown to help the blood clot, this alone can be helpful in treating phlebitis and other clotting disorders."

So we shall see how this goes for Jaden and on Saturday, I shall start the antifungal meds on him and see if it helps with curbing his obsessive behaviors. Need to do it pronto before Chinese New Year comes. =)

Multivitamin Forte

I once, had tried giving Jaden the Klaire Labs Multivitamin Forte and he rejected it with so much struggles and tears that I gave up trying.

This time, I am adamant to keep to my 2012 resolution and be a warrior mom and boy, he actually took it in without throwing a great fuss like before. *touch wood, hoping I am not jinxing it by saying it out loud*

To know what it tastes like and why Jaden rejects it with such great struggle, I need to try it myself to know the reason why and yes, it does taste bitter but most good stuff are bitter aren't they?

Well, this time I stuffed the capsule powder into his beloved sweet mangoes, oranges and even tried it with his soy yoghurt mixed with maple syrup to even out the bitterness. 

Although there are a few rejections every single time I bring the thing to his face, he will eventually open his mouth and eats it.

This multivitamin forte is the third item that I had introduce to him and I have been seeing some loose mushy stools. Almost similar to diarrhea but this is not the watery type. Just mushy mustard colour and he also have some well formed ones, just that it is now more to mustard coloured ones compared to his previous black, sticky hard stools that were hard to come out when he pushes. Now, its satisfactory but I am keeping my eyes open as I don't like it when his stool is in a mushy diarrhea form.

Tomorrow, I shall start on his antifungal again. Gonna be on a two weeks course again and hope that his concentration comes back again, or be a lot lot more aware than what he is now.

What I noticed that after taking his B6, he has turned a little more hyper and his stimming behaviors are back. He is starting to spin his cars, so I try to keep them out from sight, a few times I caught him walking on toes. OH NO! but that was only a few times so I am trying to observe longer just to hope those are one time cases. He also, is getting a little obsessive about things so that is a no good sign too. He sometimes do get lost in a daze, the faraway look yet he is still aware of other things and showing me other positive behaviors.

Just today, there was a display of fireworks outside my balcony, and he was actually appreciating the fireworks. We have brought him out to see fireworks before and that just went unnoticed. Today, he asked for more when it ended. He was excited and happy to see the display going off!

Then, now when his diaper is full, and he comes to me and put my hands on his diaper. As if he is trying to tell me that it is time to change his diaper and that he is feeling uncomfortable and he wants a bath YET when after he poos, he still don't show me signs of being uncomfortable. Only once, he ran to me after he pooed because he was feeling very uncomfortable and itchy due to a rash that happened. I did not notice any more of these uncomfortable signs anymore.

Is this the doing of the B6? Cant be, could it? Shall shoot his DAN doctor an email after his 14 days on difuclan. 

Updates

It has been 10 months since Jaden started his ABA program and boy, I become a prouder parent each time, every week, every month.

Jaden has been showing good progress so far, sometimes still lost in a daze but overall, he is doing well and it puts a smile on my face everytime he puts what he learn into practice.

He had never really shown an interest in wanting to play with toys and voila! now, he can even initiate and choose the toys he wants to play and plays it with a lot of patience.

Jaden is so much more aware of his surrounding and things that are going on. He is actually quite observant as he picks up whatever he sees, imitation. He tends to imitate after a while observing.

Although we (Jaden and us) did not get to achieve a breakthrough in the verbal sector, he is much more vocal now, letting us know what he likes and what he does not by of course, if he likes a thing, he would give you a million dollar smile and if he does not agree or ain't liking what he sees in front of him, he will whine and whine and closes his eyes. As if if he can't see the things, its not there to him.

Jaden's level of understanding is also much more better. He is showing higher compliance, obeying instructions although there are times when his mood is cranky then we shall just see a screaming monster. 

I tend not to allow him to get on with his ill-mannerism. Afterall I want him to learn that he would not get the things he want by showing negative behavior. I am one parent that really can't stand naughty boys, be it a special needs child or neurotypical child. Children learn fast when it comes to bad behavior and its our duty as parents to ensure that they don't go down that road. Some people do tell me that I should not use the cane on him but well, being Asian, being me, on how I was brought up, I believe that the method works. At least it shows better results than the West where children answer back at their parents,giving smartypant answers. You might say, it allows creative thinking but sorry, I ain't liking creative thinking that way. 

Since he has been showing positive results, his ABA supervisor gave the green light to move on into other programs.

We are now going to try to teach him how to blow because one may not know it but blowing, sucking, chewing helps with his oral muscle and that might just be our little needle (key) in the haystack to help open the door to Jaden being verbal. 

Other than ABA, his DAN doctors are also pushing up more supplements like vitamin B6, MB12 shots and chelation to see if that would help with the coming of speech too. I am so afraid to hear that he might be diagnosed with Oral Apraxia, which I hope its not.. I pray hes just a late talker.. 

So how does he communicate with us, you would ask. How do we know what he wants / wants to do and all. Well, its easy to tell since we are his parents. Now I understand why my parents say even before I move, they would know what I am up to next. Jaden will physically let us know where he wants to go and what he wants to do. 

Its a long tedious journey and be it how long, as long as he is my son, I shall walk on with him down this road. 

Back to Step One

Most of the supplements that I acquired beginning of Jaden's biomed journey is nearing their expiry or have either been finished.

Therefore, I truthfully told Dr Erwin Kay that in truth, Jaden has not been taking his supplements the way he should and that the only thing that I am doing for Jaden is keeping him to his GFCF diet although I do slack here and there too, even in that area. :(

So, this trip down to Dr Erwin Kay, I was given another round of basic supplements and maybe more for Jaden and now I am back to step one.

Its been two days since Jaden took this first supplement from the lot, the Digestive Enzymes and I have been seeing some good poop. Yea, I can tell what good and bad poop my son is pushing out from his ass and for the past few months, his poo has been irregular. Maybe every two days once to three days once but that too, only one or two in hard form, blackish or well, you can even tell what he ate the last two three days so that is actually a NO GOOD SIGN from Jaden's medical situation.

What we like to see is well formed big ones, those you would deem satisfying. UUrrgghh right? Well, a mom got to go through all these.. can't be all squirmish eh? but if you ask me about the smell, I would tell you the answer straightaway. They all smell like shit! Smelly or not, they are still shit! Funny how his DAN doctors keep asking if they were smelly.. but I do understand what they mean. 

So after two days on Digestive Enzymes and seeing positive results, I started on the B6 capsule, once a day -to be given in the morning only as it might caused him either hyperactiveness or vivid dreams (disturbed sleep) but so far, the thing that I observed after giving him that is that he became rather down-looking, not interested in fooling around like usual, the usual laughter and all that and what his therapist said is that he was just not laughing as what he usually will do when they piggyback him or play his favourite things. He was just looking all calm and sometimes, showing signs of being sleepy.

I never knew that we need so much vitamins in us in order to function healthy. Vitamin B6 is very much needed by Jaden to progress on to the next stage and what does the vitamin B6 do to him? Well, you can read it here. Of course, we do not only rely on the supplements he take to make his body's need suffice but also with fruits, veges and meat that provides the same benefits. 

Shall see how it goes tonight, if the B6 will affect his sleep and one more time tomorrow to see if he reacts the same to the supplement. If its all good by tomorrow then I shall be introducing the next supplement on Thursday. Don't know which one yet though. LOL Maybe the probiotics Factor 6, the one with the 100+ billion strains of the good tummy bacteria. 

We are going to head on to MB12 shots and chelation to help see if it would help in the speech sector as Jaden is showing signs of progress in other matters but speech so we are all hoping that that will come even if it means slowly but before that, well, I have got lots to do for him and also another round of antifungal and then the chelation journey.

Selfish

I have not been updating this blog for quite some time as I sort of, kind of gave up after a few tries and cried of rejection from Jaden when it comes to taking his supplements. 

The endless fights, tears from both ends and the non-supportive rattlings made me stop what I started a year ago.

This is, a very very selfish part on my side.

Jaden, who has no idea what he is going through right now, has only me and Mr to help him get on the road to recovery and me, just because I did not want to make my hands dirty, stopped feeding him supplements for quite some time and that, I really really hate myself deep down inside.

I am his mother, the one that is supposed to be helping him yet I am not.. but well, I have made my 2012 resolution and that is the one and only resolution I am making for the year 2012 until 2013 comes along and that is, to be the warrior mom I never was and to help Jaden fight this together even if it means bucket of tears from both end.