I know this is a long shot don t know how many of you have congenital...
I don't know about congenital hydrocephalus but my first grader (6.5 years old) has some of the same behavior problems. We set up a 504 plan for her through the school, that outlines ways to prevent or interventions for the behaviors. She started in counseling and was screened for ASD by a neurologist. Her counselor, her teacher, and I all shared what we've found works to prevent the outbursts. Namely giving warning prior to transitions, offering extra time to finish the step she's on if possible, and talking in a calm manner (she flips out if anybody talks in raised voices, etc). From what I've been told and read, behavior problems aren't unusual in kids with chronic pain at a young age. Good luck!
Thank you! Good luck to you as well! ;)
From what I've read children with hydro usually have some behavioral problems, although seemingly 'normal' ones. I was just looking for any experience.
Yes transitions are horrible. His winter coat is a trigger, but man it was $35. I've been making him ride it out (he's been wearing it a year and he feels it's still too big) but maybe I need to buy him a different one :/. We are working on noise cancelling, dimming lights when possible like I have it at home, he is allowed a lil beanie baby for comfort. He's so stinking smart, has so much to offer, these episodes of him running from me are breaking my heart!
My daughter also has it written into her plan that she can sit with the teacher or near the teachers desk if she feels overwhelmed. That one seems to help a lot!!
I'm also worried about his safety. I had a hip replacement 12 yrs ago and although I could walk again I've never been able to run with it. He knows I can't run after him and he just doesn't realise what could happen here.
I don't blame you for being worried! Thankfully my daughter has only run from me a handful of times, and though it's painful for me I can run and catch her. Most of her running has been done at school.