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Navigating this tough journey
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<blockquote data-quote="Lily's mom" data-source="post: 728999" data-attributes="member: 22853"><p>Hi everyone,</p><p>My name is Laura, I live in Ontario, Canada, and I am the mom to 6 year old Lily. My partner and I have spent a lot of time feeling very alone in our journey. We live in a rural area where there isn't a great deal of understanding about kids like Lily. She has an undiagnosed genetic disorder (whole exome sequencing showed nothing but her doctors remain convinced it is genetic) and a complicated list of conditions; it is her aggression and hair trigger that brings me here though. Her pediatrician suspects an explosive disorder and ADHD. I am in the education system and have a good range of strategies to cope with her but she pushes me beyond my level of comfort with her complex behaviour. We have just started clonidine this week but we are both feeling so tired of feeling alone. She is never invited anywhere, we have no respite presently (although we have something in the works) and we are exhausted. I am hoping I have found a place where I can ask questions and share without judgement. Being a school administrator with a Special Education background, I hope I can be some help to all of you too!</p></blockquote><p></p>
[QUOTE="Lily's mom, post: 728999, member: 22853"] Hi everyone, My name is Laura, I live in Ontario, Canada, and I am the mom to 6 year old Lily. My partner and I have spent a lot of time feeling very alone in our journey. We live in a rural area where there isn't a great deal of understanding about kids like Lily. She has an undiagnosed genetic disorder (whole exome sequencing showed nothing but her doctors remain convinced it is genetic) and a complicated list of conditions; it is her aggression and hair trigger that brings me here though. Her pediatrician suspects an explosive disorder and ADHD. I am in the education system and have a good range of strategies to cope with her but she pushes me beyond my level of comfort with her complex behaviour. We have just started clonidine this week but we are both feeling so tired of feeling alone. She is never invited anywhere, we have no respite presently (although we have something in the works) and we are exhausted. I am hoping I have found a place where I can ask questions and share without judgement. Being a school administrator with a Special Education background, I hope I can be some help to all of you too! [/QUOTE]
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