Comments on: Back to School, With (or Without) a Diagnosis http://www.blisstree.com/articles/back-to-school-with-or-without-a-diagnosis/ Family, Health, Home and Lifestyles Thu, 24 Dec 2009 00:39:20 -0500 http://wordpress.org/?v=2.8.4 hourly 1 By: Kristina Chew, PhD http://www.blisstree.com/articles/back-to-school-with-or-without-a-diagnosis/comment-page-1/#comment-557375 Kristina Chew, PhD Wed, 10 Sep 2008 21:34:14 +0000 http://www.autismvox.com/back-to-school-with-or-without-a-diagnosis/#comment-557375 @Another Laura, I felt just as you described when the daycare teachers urged us to consider having Charlie evaluated-----felt just a lot of anger and disbelief; I had the denial thing really bad. "Lightbulb" describes how I felt when I realized, yeah, that's it, and started to understand that accepting it was the beginning of helping Charlie. Hope Brad is doing good now---- @Another Laura,

I felt just as you described when the daycare teachers urged us to consider having Charlie evaluated—–felt just a lot of anger and disbelief; I had the denial thing really bad. “Lightbulb” describes how I felt when I realized, yeah, that’s it, and started to understand that accepting it was the beginning of helping Charlie.

Hope Brad is doing good now—-

]]> By: Another Laura http://www.blisstree.com/articles/back-to-school-with-or-without-a-diagnosis/comment-page-1/#comment-562873 Another Laura Wed, 10 Sep 2008 19:13:27 +0000 http://www.autismvox.com/back-to-school-with-or-without-a-diagnosis/#comment-562873 Brad is home with his nanny, so I never had that point of comparison. I was completely oblivious. My next door neighbor, a former teacher, encouraged me to call early intervention for speech. At 18 months, I shrugged it off. "Ehhh, he's just a boy," I thought. I thought the same thing at 24 months, but called Early Intervention just because I figured no big, and why not. When they flagged him for autism, I completely went into denial, complete with anger. A few weeks later, still convinced early intervention was wrong, I started surfing the internet for validation. That's when the lightbulb went on for me. (No my denial wasn't validated.) I'm so glad we sought and received a dx because it allowed Brad to receive wonderful services at only a nominal cost to us (through the state's zero to three program). I can easily imagine Brad being the undiagnosed kid who slips through the cracks. He's the quiet kid who follows directions and plays well by himself. What's there to notice. If it weren't for my neighbor prodding me, I may not have called early intervention and sought a dx. Brad is home with his nanny, so I never had that point of comparison. I was completely oblivious. My next door neighbor, a former teacher, encouraged me to call early intervention for speech. At 18 months, I shrugged it off. “Ehhh, he’s just a boy,” I thought. I thought the same thing at 24 months, but called Early Intervention just because I figured no big, and why not. When they flagged him for autism, I completely went into denial, complete with anger. A few weeks later, still convinced early intervention was wrong, I started surfing the internet for validation. That’s when the lightbulb went on for me. (No my denial wasn’t validated.)

I’m so glad we sought and received a dx because it allowed Brad to receive wonderful services at only a nominal cost to us (through the state’s zero to three program).

I can easily imagine Brad being the undiagnosed kid who slips through the cracks. He’s the quiet kid who follows directions and plays well by himself. What’s there to notice. If it weren’t for my neighbor prodding me, I may not have called early intervention and sought a dx.

]]> By: Kristina Chew, PhD http://www.blisstree.com/articles/back-to-school-with-or-without-a-diagnosis/comment-page-1/#comment-555509 Kristina Chew, PhD Wed, 10 Sep 2008 00:46:32 +0000 http://www.autismvox.com/back-to-school-with-or-without-a-diagnosis/#comment-555509 Needless to say, if we had had another child, we'd have been watching and wondering as you describe, Emily.......it was fortunate that Charlie was in daycare, in a setting with other children. I think the differences between him and the other kids were so stark even at a young age; had Charlie been home, he would have been diagnosed at a much layer age (with me denying it all the way). so true, Alli, it all seemed like such a muddle at the time, but true and obvious, in hindsight! Needless to say, if we had had another child, we’d have been watching and wondering as you describe, Emily…….it was fortunate that Charlie was in daycare, in a setting with other children. I think the differences between him and the other kids were so stark even at a young age; had Charlie been home, he would have been diagnosed at a much layer age (with me denying it all the way).

so true, Alli, it all seemed like such a muddle at the time, but true and obvious, in hindsight!

]]> By: Leanne http://www.blisstree.com/articles/back-to-school-with-or-without-a-diagnosis/comment-page-1/#comment-562529 Leanne Wed, 10 Sep 2008 00:11:45 +0000 http://www.autismvox.com/back-to-school-with-or-without-a-diagnosis/#comment-562529 Both the preschool and our prediatrician mentioned red flags at around the same time (within weeks of each other). Patrick's autism wasn't really identifiable until we tried to send him to preschool, I think because he shows such 'atypical' characteristics. Both the preschool and our prediatrician mentioned red flags at around the same time (within weeks of each other). Patrick’s autism wasn’t really identifiable until we tried to send him to preschool, I think because he shows such ‘atypical’ characteristics.

]]> By: Alli http://www.blisstree.com/articles/back-to-school-with-or-without-a-diagnosis/comment-page-1/#comment-560675 Alli Tue, 09 Sep 2008 23:54:45 +0000 http://www.autismvox.com/back-to-school-with-or-without-a-diagnosis/#comment-560675 the school principal picked up something during Alec's kindy interview and suggested we get some speech therapy, within 6 weeks of starting speech we had started our journey to a diagnosis. So many things were there for us to see but he was our first, looking back you can see it all so clearly. the school principal picked up something during Alec’s kindy interview and suggested we get some speech therapy, within 6 weeks of starting speech we had started our journey to a diagnosis. So many things were there for us to see but he was our first, looking back you can see it all so clearly.

]]> By: Hope Can Be Expensive http://www.blisstree.com/articles/back-to-school-with-or-without-a-diagnosis/comment-page-1/#comment-557174 Hope Can Be Expensive Tue, 09 Sep 2008 23:09:51 +0000 http://www.autismvox.com/back-to-school-with-or-without-a-diagnosis/#comment-557174 [...] to avoid being bankrupt by autism, is the topic of another NPR story on autism. We’ve skirted the bottom of our checking account on more than a few occasions; when we moved [...] [...] to avoid being bankrupt by autism, is the topic of another NPR story on autism. We’ve skirted the bottom of our checking account on more than a few occasions; when we moved [...]

]]> By: Leila http://www.blisstree.com/articles/back-to-school-with-or-without-a-diagnosis/comment-page-1/#comment-560640 Leila Tue, 09 Sep 2008 20:39:28 +0000 http://www.autismvox.com/back-to-school-with-or-without-a-diagnosis/#comment-560640 So true. I think the teachers and daycare staff see so many kids that they can tell when something is not quite right. Also, they spend the whole day with the child while the doctors nowadays only see the patients for a few minutes. In my son's case, it was a friend who first suspected of my son's diagnosis (he's a teacher), and right after him told us that, we got a call from my son's daycare. So true. I think the teachers and daycare staff see so many kids that they can tell when something is not quite right. Also, they spend the whole day with the child while the doctors nowadays only see the patients for a few minutes.

In my son’s case, it was a friend who first suspected of my son’s diagnosis (he’s a teacher), and right after him told us that, we got a call from my son’s daycare.

]]> By: Emily http://www.blisstree.com/articles/back-to-school-with-or-without-a-diagnosis/comment-page-1/#comment-560616 Emily Tue, 09 Sep 2008 19:34:43 +0000 http://www.autismvox.com/back-to-school-with-or-without-a-diagnosis/#comment-560616 I guess in the interest of staying on topic, I should mention diagnosis, too. TH's has never changed since his original one around when he turned 4. I suggested at an early IEP toward the end of kindergarten that maybe it shouldn't be that diagnosis (I was feeling like maybe he'd improved in some aspects enough to not require certain services), and all of the many professionals in the room rejected that out of hand. What's odd is that there are things that have come up that I didn't anticipate, even though I know his diagnosis and know it is accurate. Yes, he has LOTS of social issues, and yes, he's verbally articulate, like Aspies are "supposed" to be--if he's not engaging in a conversation of nonsequiturs. But...man, are his right-brain issues obvious. No sense of time--he still cannot read a clock or parse its meaning, doesn't know month from year or what day of the week it is. No executive processing skills whatsoever. Doesn't know if he's wearing pants or not or if they're zipped or if the shirt is on wrong side out. No voice modulation. No filter, social or otherwise. He cannot really tell me about interactions at school because he's not coming from a place to understand those interactions and describe them. He seems to know spelling but uses invented spelling most of the time...just lots and lots of things that are so right-brain related, and I think if we were to test more closely for some of these, we'd identify some of these children more accurately. The thing about TH is that he's never oppositional, never acting out. He's always cheerful and apparently insouciant. So, he's not someone's typical idea of an autistic child in a constant meltdown, disrupting everyone because he's freaking out. TH freaks out, but he does it quietly, in a corner, back to the world, hands over his ears, sometimes rocking. It's hard to diagnose accurately when these stereotypes of what "autistic" means persist. I guess in the interest of staying on topic, I should mention diagnosis, too. TH’s has never changed since his original one around when he turned 4. I suggested at an early IEP toward the end of kindergarten that maybe it shouldn’t be that diagnosis (I was feeling like maybe he’d improved in some aspects enough to not require certain services), and all of the many professionals in the room rejected that out of hand.

What’s odd is that there are things that have come up that I didn’t anticipate, even though I know his diagnosis and know it is accurate. Yes, he has LOTS of social issues, and yes, he’s verbally articulate, like Aspies are “supposed” to be–if he’s not engaging in a conversation of nonsequiturs. But…man, are his right-brain issues obvious. No sense of time–he still cannot read a clock or parse its meaning, doesn’t know month from year or what day of the week it is. No executive processing skills whatsoever. Doesn’t know if he’s wearing pants or not or if they’re zipped or if the shirt is on wrong side out. No voice modulation. No filter, social or otherwise. He cannot really tell me about interactions at school because he’s not coming from a place to understand those interactions and describe them. He seems to know spelling but uses invented spelling most of the time…just lots and lots of things that are so right-brain related, and I think if we were to test more closely for some of these, we’d identify some of these children more accurately.

The thing about TH is that he’s never oppositional, never acting out. He’s always cheerful and apparently insouciant. So, he’s not someone’s typical idea of an autistic child in a constant meltdown, disrupting everyone because he’s freaking out. TH freaks out, but he does it quietly, in a corner, back to the world, hands over his ears, sometimes rocking.

It’s hard to diagnose accurately when these stereotypes of what “autistic” means persist.

]]> By: Emily http://www.blisstree.com/articles/back-to-school-with-or-without-a-diagnosis/comment-page-1/#comment-557057 Emily Tue, 09 Sep 2008 19:25:50 +0000 http://www.autismvox.com/back-to-school-with-or-without-a-diagnosis/#comment-557057 I had the first suspicions about TH because of his obsessive spinning of objects and echolalia, but the pediatrician literally said, "He makes eye contact. He's fine." But with the baby, it wasn't just my noticing things. TH didn't go into nursery school until he was over 18 months old, so we had no other inputs. But the baby went in earlier, and in addition to my own concerns, I was hearing--as with you, gentle, but there--concerns about his behaviors. Those confirmations of my own feelings of red flags--I was second guessing myself as being hypervigilant because of TH--are probably what led to our seeking therapy for our youngest. Had we not had those other inputs from caregivers--these are very experienced caregivers and there also was a graduate student in social work observing the class--I might have sat for several more months on my concerns, rather than beginning therapy for that child at age 10 months. I had the first suspicions about TH because of his obsessive spinning of objects and echolalia, but the pediatrician literally said, “He makes eye contact. He’s fine.” But with the baby, it wasn’t just my noticing things. TH didn’t go into nursery school until he was over 18 months old, so we had no other inputs. But the baby went in earlier, and in addition to my own concerns, I was hearing–as with you, gentle, but there–concerns about his behaviors. Those confirmations of my own feelings of red flags–I was second guessing myself as being hypervigilant because of TH–are probably what led to our seeking therapy for our youngest. Had we not had those other inputs from caregivers–these are very experienced caregivers and there also was a graduate student in social work observing the class–I might have sat for several more months on my concerns, rather than beginning therapy for that child at age 10 months.

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