i have begun the great resource and information search so i can not only give you a window into my son's world, but also raise your awareness on issues that affect the differently-abled.




but first, a bit on my son and how far he has come. i am very proud of my little boy, who is now connecting with the world around him and speaking and doing so many other things that he used to be unable to do.




before my son was diagnosed, at the age of 4 he did not talk. what he did when he wanted something was to grunt and point, or just take it. he was not potty trained. he was not social with us at all. normal play with his sisters was NEVER seen. if you hugged him, he let it happen for about 2 seconds, then he would stiffen up and pull away. he raced EVERYWHERE. he was this island unto himself. and it was very difficult. we took him to doctors and they kept saying nothing was neurologically wrong with him. but this child didn't even say "mama". he didn't have a low vocabulary, he had NO vocabulary. he never had spoken, not even as an infant. but the doctors kept insisting there was nothing wrong.




then we found the Inland Regional Center (which has no website). everything changed when they screened him..he was finally diagnosed and given much needed help. today he speaks, he can hold conversations with you. of course, they are somewhat limited, and his tendency to echo (known as echolalia) does become apparent, but he can actually answer questions rather than repeat them and ask questions and have a simple conversation. because of the delay in speaking, his speech CAN be hard to understand, altho not always.




kristav has been toilet trained since about the age of 5 or 6 (it took us a year or so for him to get totally toilet trained) and can dress himself as long as there are no difficult snaps and buttons (we have been hunting down pull on EVERYTHING except jeans which we help him with). he does play and is in touch more with his world, and allows affection.




there are still limits, as with all kids. he is in speech therapy at school on a regular bases. recently his geneticist said he needs more...at least 1/2 hour to 45 minutes a DAY rather than per week. he is very much driven by a need for a routine or regular schedule. throwing anything out of his schedule disrupts him for the rest of the day if not for a week or two. he hums and spins objects to help him tune out the world. his fine motor skills are still delayed..and, yes, he still races EVERYWHERE, if we let him. but now there is connections and help in his life, and we are seeing the beautiful boy he is rather than a silent sullen stranger.




last year a specialist added autism/autistic variant to his diagnoses. he is still undergoing testing to discover more about his specific case. and this diagnoses has yet to make it across the board in his support system (for example, it is not yet a part of his school records). it is the autism that contributes to the humming and spinning activities he engages in. this month (or so), kristav is supposed to have his tri-annual psychological assessment by the schools and hopefully we will be able to add the autistic diagnoses and begin to add services that will help work with that as well as the speech and adhd and mental retardation.




we started in a dark and difficult place with my son. we have travelled a long road in the 4 years since his diagnoses. it can still be difficult, but the road ahead is so much brighter than what we have come thru. :)

welcome to insights & inspirations. i am dedicating this to my son: kristav. if you haven't read his story, please do. why am i writing this particular blog/journal. for a couple of reasons:




1. as a record. sometimes it is so hard to see/realize the changes your differntly-abled child has gone thru. some days are so bad you do wonder if ANYTHING has gotten better. on days like that, my son's family can come here and say "yes, i can see how it has gotten better".




2. to educate. sound odd? it isn't really. so many people see my child and because he is not in a wheelchair or have some other distinctive physical features of being differently abled, assume he is a "normal", if somewhat energetic, boy. they treat us as bad parents who are neglecting our child..."how could you let your son be in the middle of the street like that!?" (said to my ex-husband the day i moved into my current home...kristav got lose and was 2 blocks away before we caught up with him). or they decide they know what's wrong with my child and that the doctors have his diagnoses wrong or are labeling him or that i am not doing enough to help (like a woman did to me at a grocery store recently). perhaps hearing about what some of us parents go through (not all mind you), someone out there will be less quick to jump to conclussions one way or the other.




i love my son...but some days are exhausting (like today). others are incredible as we realize how far he has come. and while you may have missed out on the first 3-4 years of his progress, he has a long way to go still..and now you can share in his journey if you would like. besides...i will more than likely be telling you a bit about how far he has come in the last few years. ;-)

posted by domynoe on 5:13:57 AM | note me

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