Friday, June 22, 2007

To Infinity and Beyond...or at least to NY!!

A mere 2 weeks after returning from half way around the world, Toktogul and I find ourselves back in the belly of another plane, trying not to whack people on the head with our ever-too-overweight carryons! Hahaha! We spent yesterday heading to Nanuet, NY for Toktogul's evaluation with Dr. Boris Gindis. It proved to be a somewhat frustrating day for me, as I tried to navigate around New Jersey's highway system, then was subject to one woman's wrath and display of her 4 letter word vocabulary as she claimed I took the parking place that she was waiting for in the she was 3 aisles away. Hmmm...guess we now can claim rights to parking spaces if we are even IN the parking lot, regardless of whether we have identified a spot as available or not! Needless to say, I was happy to get settled in our hotel room and look forward to a good nights sleep and a better tomorrow. The one highlight in an otherwise sour day came while flipping through radio stations in the rental car as I spent an hour lost yesterday and I stumbled across a Russian language music/talk station which caused Sleeping Tokie in the backseat to suddenly awaken and spring back to life. I thought to myself, only in New York!

This morning things were much better and we found ourselves at Dr. Gindis' office at 9:30 AM, fresh and ready to face the day. Dr. Gindis and his Assistant, Tatyana, were warm and inviting, and Tatyana immediately got down on Toktogul's level and spoke with him for several minutes. How excited Tokie had been to know he was going to be able to communicate with someone in Russian again! I asked Tatyana to explain to Tokotgul that this visit was not like a regular Dr.'s visit, that he would take tests for school and NOTHING would involve any pain. Toktogul had asked me repeatedly if this Dr. would work on his mouth or his ears, and although I tried to reassure him, he was still quite uncertain and insecure about what might be happening. Tatyana explained what would be happening over the next couple of days, and Toktogul finally seemed to relax about everything. While he played with toys in the waiting room, I visited with Dr. Gindis took a social and medical history, such as it was since we have almost no information. Then, with a break for lunch, the testing began and lasted most of the day.

At the end of the day Dr. Gindis spent over an hour going over all the results, discussing proper placement for Toktogul. I learned so much about what to expect educationally and developmentally from Toktogul, what his future might hold, how best to work with him and advocate for him. We got a baseline assessment of where his skills are right now, none of which was a major surprise to me at all, but confirmed much of what I already suspected. There were discussions about reasonable expectations for addressing delays, looking at long term, slow gains rather than overnight success, etc. Tokie is essentially starting at ground zero, with no firm grasp on the cyrillic alphabet, truly completely illiterate. His speech is in the severe category, again something I easily could spot and we have his actual speech evaluation in Russian tomorrow. He tested out at early 1st grade for math, so that seems to be an area where he might excel. His cognitive skills are pretty solid, so the expectation is that one day he will be able to catch up, go to college, and pursue whatever he wants in life. However, this is a child approaching 9 years old, so in many respects he is far behind his chronological age peers. However, he is not really any further behind...other than speech which is due to a physical impairment...than other kids from his unique background. His curiosity and personality will take him far, and Dr. Gindis commented that his willingness to use language was a surprise, that most kids from his background with his kind of speech impediment and lack of ability to be understood are shy, reserved, and unwilling to speak much. That's sure not Tokie!

As Dr. Gindis put it, the important thing is not to put too much importance on school, but on the person he will be, and everything else will happen in time...and that has always been our attitude. But having realistic goals and expectations is so important, or assumptions might be made about Toktogul's progress, or lack of it, and we might have been tempted to put too much pressure on him. Knowing that he wasn't even able to write or read in Russian yet is huge, and knowing what his strengths are so we can capitalize on and encourage him in those areas so he can experience success is incredibly important. He is going to have a lot of work ahead of him, a lot of struggling in many areas over the next several years. If we can help him find talents and pride in other areas, it will help build his confidence and draw the focus away from the areas where the challenges lay.

Tatyana kept remarking on what a happy little guy he is, and with all that lies ahead medically and educationally, I think my main job will be to make sure that happy, contented spirit is not murdered!! I am so thankful we went ahead with our plan to get the evaluation done by Dr. Gindis. It will be invaluable as we head into this new life with Toktogul. We gained insights, were given a firm baseline of skills or lack thereof, a game plan for the future, and the report will be a tremendous asset when working on trying to obtain services from the school or others. We would have had none of this information had we not elected to come out here, and in our case we received no information on Toktogul's school history, other than a speech evaluation, so we really were flying blind. I know feel as if I have 20/20 vision where Tokie is concerned.

I think the most important thing though, for me, is that I have a remarkable, resilient son...a child who has enormous potential, and who I will have the pleasure of seeing grow in ways most parents of "normal" homegrown kids will not. Surely we will have tears of frustration from him in years to come, anguish ourselves over questioning our decisions where education is concerned, and worry over painful medical procedures. But what successes will we be witness to?? What incredible moments of victory over FINALLY finding mastery over skills acquired, long overdue?? What kind of decent, warm, loving father and husband will he eventually become??

Test results are important, skills are necessary, an education is paramount for success. But as I watch my sleeping little boy in the bed next to me, when I think of how far he has already come...and the distance he still has to travel, I realize that I already see in him the most important qualities...the things he is already successful at...loving others, accepting people for who they are, lighting up a room with his smile and warmth, sharing and caring, having an ingrained sense of right and wrong. These are the things that test can't measure, these are the things that are the makings of a phenomenal man. The rest is icing on the cake, as far as I am concerned.

1 comment:

Anonymous said...


This is great news about Tokie and I am so glad that Dr. Gindis is available to do this service. What a wonderful opportunity to know where Tokie is and where he is headed. I like the fact that you are going to focus on making sure he is happy and his spirit isn't diminished. Being a teacher and a parent of my kiddo girls, who have learning deficits, this is hard for me at times. I must say though, I have become much better at this and the upmost importance in our home is to have happy well adjusted family members who can contribute to society. You are right academics will come in time, and taking care of the emotional world is the first priority.

Have a safe and fun trip. I am really enjoying your blog and am grateful to be reminded of what is important for our kiddos.

Best wishes,
Robin Gillis