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First post- desperate for support
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<blockquote data-quote="MLA" data-source="post: 483168" data-attributes="member: 13255"><p>Thank you all so much for your responses. I don't mind the questions at all. A little about me. I'm a former social worker who specialized in children and adolescents with emotional and behavioral disorders. I left that field in the late 90's to run non-profit programs for kids. I had trouble starting my family- four miscarriages before my first daughter was born, and one before my second daughter (an online support group like this one got me through that time in my life). I live in the suburbs of Chicago.</p><p></p><p>Here's a dsm explanation of her <a href="http://www.spdfoundation.net/" target="_blank">diagnosis</a>. She has some overlap with many other diagnosis, like Asperger's, ADD or bipolar, but sensory regulatory disorder is clearly the right one for her. Basically, her central nervous system is wired wrong. She's hypersensitive to sensory input so she physically feels things "bigger" than most people. Then she often has an inability to regulate her emotions- both highs and lows (which might look like bipolar). Not all kids with sensory integration disorders have regulation issues. With my daughter, thats the primary issue.</p><p></p><p>Knowing what I know now, I can tell you that she was exactly like this from birth. I just thought I had a challenging baby/toddler. When she was 2.5 a colleague encouraged me to have her observed by a highly respected Occupational Therapist (OT). She was the first to offer this diagnosis. It was a huge relief to know that there was actually something wrong- I assumed that meant there was something I could do about it. From the time she was 2.5 she's been in therapy- first speech for articulation (often goes hand in hand with motor planning issues), then Occupational Therapist (OT) and social work. She was placed in a therapeutic preschool when she was three and has had an IEP ever since. Now she is in a mainstream kindergarten with support. She sees a private social worker weekly.</p><p></p><p>Shes had an MRI, thyroid testing and been evaluated by a neurodevelopmental pediatrician who all support the sensory regulatory diagnosis. After trying many medications (ssris, and other mood disorder medications) weve found some success with Abilify. Its made a big difference at school but not so much at home. If there is even the slightest change in her body (if she needs to go to the bathroom or if shes hungry, tired or worried) she becomes completely dysregulated- either manic or violent tantrums. We live in a constant state of trying to prevent. Its especially horrible for my younger daughter who is typically developing (just turned four and delicious).</p><p></p><p>When she's regulated she is honestly the most amazing child. Incredibly smart (cognitive skills off the charts),sweet, loving... all good things. Its impossible to imagine feeling anything but total love for her. But when she's dysregulated, it's as if a completely different person has taken over her body. Its like living at war- in constant trauma or threat of trauma. In our worst moments, its hard to even access those loving feelings.</p><p></p><p>If youve made it this far, THANK YOU!! And believe me, this is the abbreviated version. I hope that with this group Ive found people who can understand what Im going through even if our situations are different.</p><p></p><p>Thanks for listening,</p><p>MLA</p></blockquote><p></p>
[QUOTE="MLA, post: 483168, member: 13255"] Thank you all so much for your responses. I don't mind the questions at all. A little about me. I'm a former social worker who specialized in children and adolescents with emotional and behavioral disorders. I left that field in the late 90's to run non-profit programs for kids. I had trouble starting my family- four miscarriages before my first daughter was born, and one before my second daughter (an online support group like this one got me through that time in my life). I live in the suburbs of Chicago. Here's a dsm explanation of her [URL='http://www.spdfoundation.net/']diagnosis[/URL]. She has some overlap with many other diagnosis, like Asperger's, ADD or bipolar, but sensory regulatory disorder is clearly the right one for her. Basically, her central nervous system is wired wrong. She's hypersensitive to sensory input so she physically feels things "bigger" than most people. Then she often has an inability to regulate her emotions- both highs and lows (which might look like bipolar). Not all kids with sensory integration disorders have regulation issues. With my daughter, thats the primary issue. Knowing what I know now, I can tell you that she was exactly like this from birth. I just thought I had a challenging baby/toddler. When she was 2.5 a colleague encouraged me to have her observed by a highly respected Occupational Therapist (OT). She was the first to offer this diagnosis. It was a huge relief to know that there was actually something wrong- I assumed that meant there was something I could do about it. From the time she was 2.5 she's been in therapy- first speech for articulation (often goes hand in hand with motor planning issues), then Occupational Therapist (OT) and social work. She was placed in a therapeutic preschool when she was three and has had an IEP ever since. Now she is in a mainstream kindergarten with support. She sees a private social worker weekly. Shes had an MRI, thyroid testing and been evaluated by a neurodevelopmental pediatrician who all support the sensory regulatory diagnosis. After trying many medications (ssris, and other mood disorder medications) weve found some success with Abilify. Its made a big difference at school but not so much at home. If there is even the slightest change in her body (if she needs to go to the bathroom or if shes hungry, tired or worried) she becomes completely dysregulated- either manic or violent tantrums. We live in a constant state of trying to prevent. Its especially horrible for my younger daughter who is typically developing (just turned four and delicious). When she's regulated she is honestly the most amazing child. Incredibly smart (cognitive skills off the charts),sweet, loving... all good things. Its impossible to imagine feeling anything but total love for her. But when she's dysregulated, it's as if a completely different person has taken over her body. Its like living at war- in constant trauma or threat of trauma. In our worst moments, its hard to even access those loving feelings. If youve made it this far, THANK YOU!! And believe me, this is the abbreviated version. I hope that with this group Ive found people who can understand what Im going through even if our situations are different. Thanks for listening, MLA [/QUOTE]
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