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<blockquote data-quote="slsh" data-source="post: 181858" data-attributes="member: 8"><p>Hi Threelittles - so glad you found us!!</p><p> </p><p>Before I respond, I just want to warn you that we all bring our personal biases, based on our own experiences, to the board. <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite2" alt=";)" title="Wink ;)" loading="lazy" data-shortname=";)" /> None of us have "the" universal right answer but we do have an amazing range of opinions, experiences, and suggestions for things that have worked. Please take what you can use and skip the rest. We're also a great place for a good old fashion vent, and a shoulder when you need it.</p><p> </p><p>So - my bias, based on having had a kiddo who had a rocky NICU course and severe developmental disabilities, would be to stick with a developmental pediatrician right now and also see if you can find a therapist (therapist) who can help you work on behavior management. I think it's perfectly reasonable to take this approach for now, especially given his history and his young age.</p><p> </p><p>I understand wanting to keep his care centralized. I'm not sure it can always be done. Aside from the different specialists involved and trying to get them all on the same page, I also found as my oldest grew that my tolerance for "those" docs decreased rapidly (you know, the ones who pat your head and say "don't worry", or the ones who are completely unconcerned about an issue that we *know* is important). I ended up with a geographically and institutionally diverse team. But it was a *team*, and to me that is what mattered most.</p><p> </p><p>I also really understand how it feels like everything is focused on treatment, appointments, etc., and how it doesn't feel like a normal family life. I think there were about 10 years there where we did Occupational Therapist (OT)/PT/ST several times a week for Boo, therapy 2 times a week for middle son, then you throw in Boo's frequent major seizures (i.e. ER trip) and thank you's frequent major rages (i.e. ER trip and usually hospitalization) - life felt like one very long waiting room. I especially felt horrible for the younger 2, because I expected them at very young ages to be able to sit for hours in an ER/doctor office with me and behave. To their credit, they did. It was a grossly abnormal young childhood but - we had no choice. As the younger 2 kids got older, husband and I finally clued in on how not normal our lives were and we started making a really concerted effort to have some "normal" days in there as well, for all the kids. We found a balance, as much as the needs of our 2 oldest would allow. I can tell you that my younger 2 kids don't seem to be too horribly traumatized by it all, though they do have some "interesting" stories about their childhood so far, LOL. They *are* definitely much more empathetic and compassionate than your average 10- and 13-year-old. I also have tried to emphasize to them that they are far better equipped to handle anything life throws at them because they have been growing up in such a different kind of family. Trying to keep a positive spin on things for them. <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite2" alt=";)" title="Wink ;)" loading="lazy" data-shortname=";)" /> </p><p> </p><p>Consistency... LOL, sorry, but I have to chuckle because that was my undoing for years. I never realized how *hard* it is - but it sounds like you are on the right track. At least you recognize how important it is and that you need to work on it. <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite2" alt=";)" title="Wink ;)" loading="lazy" data-shortname=";)" /> Practice, practice, practice. I can tell you that I'm a whole lot more consistent now than I was 10 years ago.</p><p> </p><p>How do you feel about him being in a mainstream class? I personally am a very staunch believer in full inclusion regardless of ability (for many reasons but I'll stay off my soapbox this morning, LOL) - something I've been completely unsuccessful in obtaining for my oldest. I do believe in self-contained classrooms for kids with significant behavior problems but only after everything possible has been done to maintain and support them in the mainstream setting. Just my opinion, but I would not be concerned about adding "labels" at this point - I think your priority is insuring he has a positive adjustment to a mainstream class and that the supports are there for him to succeed. </p><p> </p><p>Whew - guess the coffee kicked in a little *too* well this morning, LOL! <img src="/community/styles/default/xenforo/smilies/coffee.png" class="smilie" loading="lazy" alt=":coffee:" title="coffee :coffee:" data-shortname=":coffee:" /> Anyway - welcome and so glad you found us!!</p></blockquote><p></p>
[QUOTE="slsh, post: 181858, member: 8"] Hi Threelittles - so glad you found us!! Before I respond, I just want to warn you that we all bring our personal biases, based on our own experiences, to the board. ;) None of us have "the" universal right answer but we do have an amazing range of opinions, experiences, and suggestions for things that have worked. Please take what you can use and skip the rest. We're also a great place for a good old fashion vent, and a shoulder when you need it. So - my bias, based on having had a kiddo who had a rocky NICU course and severe developmental disabilities, would be to stick with a developmental pediatrician right now and also see if you can find a therapist (therapist) who can help you work on behavior management. I think it's perfectly reasonable to take this approach for now, especially given his history and his young age. I understand wanting to keep his care centralized. I'm not sure it can always be done. Aside from the different specialists involved and trying to get them all on the same page, I also found as my oldest grew that my tolerance for "those" docs decreased rapidly (you know, the ones who pat your head and say "don't worry", or the ones who are completely unconcerned about an issue that we *know* is important). I ended up with a geographically and institutionally diverse team. But it was a *team*, and to me that is what mattered most. I also really understand how it feels like everything is focused on treatment, appointments, etc., and how it doesn't feel like a normal family life. I think there were about 10 years there where we did Occupational Therapist (OT)/PT/ST several times a week for Boo, therapy 2 times a week for middle son, then you throw in Boo's frequent major seizures (i.e. ER trip) and thank you's frequent major rages (i.e. ER trip and usually hospitalization) - life felt like one very long waiting room. I especially felt horrible for the younger 2, because I expected them at very young ages to be able to sit for hours in an ER/doctor office with me and behave. To their credit, they did. It was a grossly abnormal young childhood but - we had no choice. As the younger 2 kids got older, husband and I finally clued in on how not normal our lives were and we started making a really concerted effort to have some "normal" days in there as well, for all the kids. We found a balance, as much as the needs of our 2 oldest would allow. I can tell you that my younger 2 kids don't seem to be too horribly traumatized by it all, though they do have some "interesting" stories about their childhood so far, LOL. They *are* definitely much more empathetic and compassionate than your average 10- and 13-year-old. I also have tried to emphasize to them that they are far better equipped to handle anything life throws at them because they have been growing up in such a different kind of family. Trying to keep a positive spin on things for them. ;) Consistency... LOL, sorry, but I have to chuckle because that was my undoing for years. I never realized how *hard* it is - but it sounds like you are on the right track. At least you recognize how important it is and that you need to work on it. ;) Practice, practice, practice. I can tell you that I'm a whole lot more consistent now than I was 10 years ago. How do you feel about him being in a mainstream class? I personally am a very staunch believer in full inclusion regardless of ability (for many reasons but I'll stay off my soapbox this morning, LOL) - something I've been completely unsuccessful in obtaining for my oldest. I do believe in self-contained classrooms for kids with significant behavior problems but only after everything possible has been done to maintain and support them in the mainstream setting. Just my opinion, but I would not be concerned about adding "labels" at this point - I think your priority is insuring he has a positive adjustment to a mainstream class and that the supports are there for him to succeed. Whew - guess the coffee kicked in a little *too* well this morning, LOL! :coffee: Anyway - welcome and so glad you found us!! [/QUOTE]
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