It’s been long overdue. Kyle is finally making definitive strides toward a mobile future. It is a relief and a pleasure. He’s not quite walking on his own, but it is only a matter of time now.
Filed under: Down Syndrome, Hawaii, Kids, Random | Tags: medicaid, ohana, sucks
Since we are not independently wealthy, and the health care plan offered by my company is a little shall-we-say rich for our blood, we signed up Kyle for Medicaid, since his DS status allows him to qualify. Once signed up, we received some poorly crafted communications from the program informing us we had to select a provider – yes, even Medicaid is outsourced (maybe that’s the problem?). Once we figured out what we were supposed to do, we signed him up for Ohana, which seemed the less dodgy of the two options.
After a couple routine visits to our primary pediatrician, we were summarily informed that we would need to find another provider, as it seems Ohana has not been paying their bills. Of course, the wonderful helpful folk at Ohana – very friendly and composed they are – could neither confirm nor deny such reports. I guess you get what you pay for. And, if you are a tax-paying American sap, that means precious little. What a country!
This week we met with our therapist and coordinator to talk about Kyle’s progress. It was not all rosy news. Although he hit most of the objectives we had set, it is hard for us to feel satisfied with the level of progress we are seeing. He’s already a year behind in walking, and there are so many cognitive delays it’s hard to know where to begin. While we definitely celebrate and take joy in any and every accomplishment he makes, it is often offset by frustration at the slow pace and setbacks in progress. It is hard to know how much is a result of his innate character, and how much is dependent on our ability to teach and encourage. Am I doing enough for him?
A couple months back I posted about Kyle’s amazing developments over the course of a single month in Hawaii. I am happy to report that his progress continues along the same trajectory.
Some of the credit goes to the workers from Easter Seals who are helping Kyle with his mental and physical development. A physical therapist visits us once a week, and an educator once every two weeks. Kyle has always had an aversion to physical therapy, possibly due to the subpar experiences he had in Tokyo, and it took him awhile to warm to the therapist. Whenever she would arrive, he would immediately freeze up and refuse to demonstrate any of what he is capable of. Fortunately he has realized she is friend, not foe, and in recent sessions has been much more active. The education sessions, on the other hand, he has enjoyed consistently.
Unaided sitting, climbing from an assisted standing position, communicating through hand gestures, motoring from room to room, stacking blocks – all of these seemed far out of his reach just a few months ago but are now a part of his arsenal of skills. He still has a long way to go, but, suffice to say, he is thriving here.
This is our second son Kyle. He has Down Syndrome, which provided one of the motives behind our move to Hawaii.
Everything about our experience of dealing with his condition in Japan – starting with the way we found out – was less than satisfactory. As a culture the Japanese are not well-equipped to deal with difference, and this was reflected in the medical and therapeutic care we received for Kyle. Without dwelling too much on the negative, let’s just say that we never encountered a professional caregiver who was prepared to do more than the bare minimum, and often it was hard to even find that level of provision. In fairness, the doctors at the National Research Institute for Child Health and Development located near our place in Setagaya-ku were competent.
But nobody was ever what I would call supportive. Hence the move.
On arrival we contacted H-KISS, who put us in touch with a case handler for early intervention services provided by Easter Seals. He came to our home and spent nearly two hours explaining to us the overwhelming array of services and information tools available to us through Easter Seals and the Hawaiian government. He arranged for someone to come in a couple weeks to look at Kyle and recommend therapies to aid his growth. And he actually seemed genuinely interested in and concerned about Kyle’s condition and our situation.
But the most amazing development has been Kyle’s progress in the four weeks since coming to Hawaii. Something about the combination of clean, salty air, abundant sunlight and space to move has triggered noticeable improvements in his motor skills, communication and overall demeanor. He loves it here!
