I have finally organized all the new exercises, and reviewed the assessment DVD, getting geared up for the new rounds of ABR. On the first day, Jason was so cooperative that he let us do 2 hours of ABR (ball-rolling plus manual) on him without a wiggle. The flow of the day went so well that I got into this wishful thinking mode that from now on, days will go on like this. It turns out that any expectation of that sort is nothing but realistic.
We were lucky if we could get an hour of ball-rolling done on his abdomen while he is sleeping. But the back? Don't even think about it. I really don't know why Jason was so cooperative when he's in the Montreal training room. Pure pressure?
ABR aside, Jason has been quite responsive lately. He would be reading the Little Reader binder with me (http://www.brillkids.com/teach-reading/index.php) following words I said, laughing and giggling as I made funny sounds. He is getting humorous too...cracking into his characteristic laughs that are contagious. Ever since his potty debut this February, he finds having a BM in the potty funny. He would laugh when he hears his own poop drop, laugh when he hears his own fart, laugh when he says bye bye to his grandiose production. It's kind of gross to write it down, but when we were there, we just found it super-hilarious. Unfortunately, even though he is now willing to pass on the potty, constipation is not history yet. There are frequent times when we still have to use our last resort (suppository) despite all the other nutritional and supplemental support we've tried. Namely fish oil, flax seed, pro-biotics, aloe vera juice, prune juice, prune/apricot pureé, Lax-a-day,etc.....) We even followed a GFCF diet so the last possible culprit was eliminated.
We will be seeing our naturopath for the second time next month. I hope she will have a more effective protocol for us.
Tuesday, April 27, 2010
Thursday, April 22, 2010
Rock-and-rolling with ABR
Came back from the long-anticipated assessment with Leonid, the brain behind ABR. I went there with lots of questions and worries in mind, that Jason's mobility functions seem to getting more limited as an unavoidable side-effect of the ABR process. But I'm so glad to come back with questions answered, and a reassurance that Jason is still on the right track.
Leonid talked about the tent effect, how his back and his legs were moving (or bouncing) in one. Crawling motion in the past were done by what seems like a sling across the shoulder blades and the pelvis, i.e. wrong place wrong movement, so it won't last. Now, as his back and hips are getting released, the legs are left on their own and thus releasing the weakness...sort of. (if I can totally understand and rephrase what he said). He said there are lots of room for release in his back (hour-glass effect). Articulation of his vertebral column will help reducing the tent effect and act as the bridge between the top and the bottom within the shoulder girdle/pelvis/circumferential mass. He also said to expect further elongation of his neck, i.e. his neck will extend further before coming back up.
I don't expect anyone who read this to understand everything I wrote. I am not even sure that I understand this 100% myself. But Leonid was joking that I was one, among others, who asked lots of questions...but how could I not? I really wonder if the other parents understand everything Leonid said? Now that his Russian accent has improved so much, it's clearly not a language issue...but that of technical know-hows.
I really wish I had his brain and his X-ray vision, so I will not be panicky so much during the ABR process. But I'm just a mother...a very eager mother to help my son achieve his potential...whatever that was meant to be.
Anyway, I know Leonid feels good after seeing Jason. If he feels good, I feel good.
Ball Rolling....
We learned the new super soft ball rolling technique. Descent->Roll forward->Rock back...so goes the rhythm. It seems to be an easy, fun way to do 'therapy' on Jason. Jason surprised us by being so cooperative all along the 2-day training. He let us practise on him while lying down on the bench...half asleep...and when he is not, he will look at us with a smiley face or try to grab the ball from us making it a game. When we first started ABR 4 years ago, I never imagined Jason would really lie down and let us work on him...but he did....albeit not without some 'management' on our part. We thank God for Jason and ABR. I just hope God will give me more time and more energy to help him.
Leonid talked about the tent effect, how his back and his legs were moving (or bouncing) in one. Crawling motion in the past were done by what seems like a sling across the shoulder blades and the pelvis, i.e. wrong place wrong movement, so it won't last. Now, as his back and hips are getting released, the legs are left on their own and thus releasing the weakness...sort of. (if I can totally understand and rephrase what he said). He said there are lots of room for release in his back (hour-glass effect). Articulation of his vertebral column will help reducing the tent effect and act as the bridge between the top and the bottom within the shoulder girdle/pelvis/circumferential mass. He also said to expect further elongation of his neck, i.e. his neck will extend further before coming back up.
I don't expect anyone who read this to understand everything I wrote. I am not even sure that I understand this 100% myself. But Leonid was joking that I was one, among others, who asked lots of questions...but how could I not? I really wonder if the other parents understand everything Leonid said? Now that his Russian accent has improved so much, it's clearly not a language issue...but that of technical know-hows.
I really wish I had his brain and his X-ray vision, so I will not be panicky so much during the ABR process. But I'm just a mother...a very eager mother to help my son achieve his potential...whatever that was meant to be.
Anyway, I know Leonid feels good after seeing Jason. If he feels good, I feel good.
Ball Rolling....
We learned the new super soft ball rolling technique. Descent->Roll forward->Rock back...so goes the rhythm. It seems to be an easy, fun way to do 'therapy' on Jason. Jason surprised us by being so cooperative all along the 2-day training. He let us practise on him while lying down on the bench...half asleep...and when he is not, he will look at us with a smiley face or try to grab the ball from us making it a game. When we first started ABR 4 years ago, I never imagined Jason would really lie down and let us work on him...but he did....albeit not without some 'management' on our part. We thank God for Jason and ABR. I just hope God will give me more time and more energy to help him.
Thursday, April 15, 2010
Getting ready for the trip...
Tomorrow, we will be heading for our Spring visit to the ABR centre in Montreal. I am so excited because I heard so many good testimonials with the new ball-rolling technique. Well, that's sooo me. I am usually very excited in every new learning opportunity, new lessons, new books, yet keeping the momentum up till the end is another story. I am hoping this time I will keep the steam going to a point where I can share MY version of success stories.
I found ABR in 2005. It took me another year for me to decide we'll take the ABR path. As a single-income household, you really have to watch every penny and the choice of therapy sometimes does not depend solely on its validity...but on efficiency by cost, by time, and by logistics. After considering all other alternatives, (MEDEK in Toronto, Anat Baniel in San Rafael, Suit Therapy in Michigan, Family Hope Center in Philadelphia, etc...) we decide we'll give ABR a try.
In the first few months of ABRíng, I did it with new energy new commitment and the results were amazing (coupled with the fact that the body responds to all new therapy with an "awakening" response, hence the initial response almost always were better than later down the road). His abdomen which used to be folded and weak changed to a full strong ab. The shoulder blades which used to bulge out when raising his arms were back in place. I was hopeful this would eventually translate to better motor ability, stronger trunk and better balance (his major obstacle), then bingo, he'd be walking in no time. However, this isn't the way miracle happens. It is a long process....sometimes painful. Not that the therapy itself caused any pain at all (not like MEDEK, when my thumb went semi-paralyzed after the almost impossible acrobatic manipulation at Jason's ankles; nor the endless creeping and crawling of the physical program at FHC), but it's the pain for a 'seemingly' lack of progress for a prolonged period of time, and the pain to see the 'seeming' loss of some of the functional skills he had. e.g. his ability to bear weight went from minutes to just seconds, his arm-leg coordination in crawling was all confused, to a point he couldn't crawl safely without a harness wrapped around his trunk. Even though I know that this process of fascial release took many layers of unwinding to complete, it's difficult for me (or any lay-mother) to tell if this really is just part of the 'process', or if this is a true regression because of age. I even wrote Leonid an email saying ABR is like a river of no return...that it's like we have to keep going and going but we can never stop because I'm afraid I would be leaving him in a ragdoll state of (non-)functions. But he replied saying that it's actually CP (cerebral palsy) that is the river of no return. (yea, cerebellar hypoplasia could be placed under the broad umbrella of CP) It was until then that I realized what we've done through ABR was actually helping to reduce the damage CP would have done to our kids. When I saw his calf muscles growing, I couldn't help but think "doesn't this defy the rules? cuz non-walking CP kids usually don't have calf muscles?".
And when I heard all the exciting testimonials about the new ball-rolling technique that I'm going to learn in this trip, I am all the more hopeful than ever. I know this is the breakthrough we all need at ABR. We need not just something that works, but works efficiently. With this newly injected dose of confidence, I hope Jason will benefit from this new technique real soon.
I found ABR in 2005. It took me another year for me to decide we'll take the ABR path. As a single-income household, you really have to watch every penny and the choice of therapy sometimes does not depend solely on its validity...but on efficiency by cost, by time, and by logistics. After considering all other alternatives, (MEDEK in Toronto, Anat Baniel in San Rafael, Suit Therapy in Michigan, Family Hope Center in Philadelphia, etc...) we decide we'll give ABR a try.
In the first few months of ABRíng, I did it with new energy new commitment and the results were amazing (coupled with the fact that the body responds to all new therapy with an "awakening" response, hence the initial response almost always were better than later down the road). His abdomen which used to be folded and weak changed to a full strong ab. The shoulder blades which used to bulge out when raising his arms were back in place. I was hopeful this would eventually translate to better motor ability, stronger trunk and better balance (his major obstacle), then bingo, he'd be walking in no time. However, this isn't the way miracle happens. It is a long process....sometimes painful. Not that the therapy itself caused any pain at all (not like MEDEK, when my thumb went semi-paralyzed after the almost impossible acrobatic manipulation at Jason's ankles; nor the endless creeping and crawling of the physical program at FHC), but it's the pain for a 'seemingly' lack of progress for a prolonged period of time, and the pain to see the 'seeming' loss of some of the functional skills he had. e.g. his ability to bear weight went from minutes to just seconds, his arm-leg coordination in crawling was all confused, to a point he couldn't crawl safely without a harness wrapped around his trunk. Even though I know that this process of fascial release took many layers of unwinding to complete, it's difficult for me (or any lay-mother) to tell if this really is just part of the 'process', or if this is a true regression because of age. I even wrote Leonid an email saying ABR is like a river of no return...that it's like we have to keep going and going but we can never stop because I'm afraid I would be leaving him in a ragdoll state of (non-)functions. But he replied saying that it's actually CP (cerebral palsy) that is the river of no return. (yea, cerebellar hypoplasia could be placed under the broad umbrella of CP) It was until then that I realized what we've done through ABR was actually helping to reduce the damage CP would have done to our kids. When I saw his calf muscles growing, I couldn't help but think "doesn't this defy the rules? cuz non-walking CP kids usually don't have calf muscles?".
And when I heard all the exciting testimonials about the new ball-rolling technique that I'm going to learn in this trip, I am all the more hopeful than ever. I know this is the breakthrough we all need at ABR. We need not just something that works, but works efficiently. With this newly injected dose of confidence, I hope Jason will benefit from this new technique real soon.
Friday, April 9, 2010
OK now...how should I start here? I guess I should start by explaining why I chose this name for my blog - Miracles-in-Progress...hmmm
One day, when I was exhausted, despaired, and frustrated with the lack of progress in my son, I bumped into this bible verse:
"These things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, do not despair, for these things will surely come to pass." Habakkuk 2:3
I could not believe my eyes as it's like God speaking to me live. I felt instant peace in my heart and I decided to make a deliberate choice to believe that we are awaiting a miracle to come about. Note that I said "make a ...choice to believe". I don't care if I truly believe it will happen,or not, but I've chosen to believe. This keeps me going, keeps me positive, keeps me strong, and ready for more challenges ahead. It just takes time. Lots of time. I believe, like any other miraculous recovery, that Jason is a work-in-progress that God has chosen us to help Him work towards completion. We don't know when, but if we believe and do not falter, it will happen. It may not be how we human beings perceive a miracle to be (e.g. suddenly rise from his chair and walk), but whatever my son was meant to be in His plan. Hence the name of this blog.
One day, when I was exhausted, despaired, and frustrated with the lack of progress in my son, I bumped into this bible verse:
"These things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, do not despair, for these things will surely come to pass." Habakkuk 2:3
I could not believe my eyes as it's like God speaking to me live. I felt instant peace in my heart and I decided to make a deliberate choice to believe that we are awaiting a miracle to come about. Note that I said "make a ...choice to believe". I don't care if I truly believe it will happen,or not, but I've chosen to believe. This keeps me going, keeps me positive, keeps me strong, and ready for more challenges ahead. It just takes time. Lots of time. I believe, like any other miraculous recovery, that Jason is a work-in-progress that God has chosen us to help Him work towards completion. We don't know when, but if we believe and do not falter, it will happen. It may not be how we human beings perceive a miracle to be (e.g. suddenly rise from his chair and walk), but whatever my son was meant to be in His plan. Hence the name of this blog.
Thursday, April 8, 2010
Miracles-in-progress
OK. As with many modern technology, be it DVD, HDTV, iPod, GPS, etc...I am quite contended to be a late adopter. It must have been 6 years ago when my then 14-year-old niece, who lived with me at the time, was blogging every night. She made it such a pious nightly ritual that she would regard this with a priority much higher than her schoolwork, among other things. I spent a lot of time nagging, with light-hearted tones of ridicule and despiteful wonders. But here I am, writing my own blog.
Well...with a life like mine, so full of challenges and adventures, it's only natural for me, albeit late, to start my own, isn't it? I think I will use this blog not only to share with my friends and family about my journey as a mother of a boy with special needs and a cancer survivor, but also as an exercise of therapeutic writing, bringing myself closer to those inner thoughts and feelings that are lurking deep in my heart.
Well...with a life like mine, so full of challenges and adventures, it's only natural for me, albeit late, to start my own, isn't it? I think I will use this blog not only to share with my friends and family about my journey as a mother of a boy with special needs and a cancer survivor, but also as an exercise of therapeutic writing, bringing myself closer to those inner thoughts and feelings that are lurking deep in my heart.
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