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Proposal for adding something to standard operating procedure for peds exams...

Posted by @rickyrhea in About Kids & Teens, Jul 11, 2011

I have a son with several diagnoses including bilateral radial aplasia, ADHD, ODD, and Anxiety. For the most part, it's been a bumpy ride, but I've been able to ride with my hands in the air, but this past year, someone turned it up full speed, and it's been white knuckles the whole way. Since my son is 10, and I'm a single parent, I've had lots of practice circling my wagons and gathering support and resources, but again, this past year was definitely the worst so far.

I had the support of family and friends, and of course, Mayo was doing a great job responding to my concerns about my son's behavior, but as my friends were helping me through, they were surprised to learn I got him a social worker through Children's Mental Health or that I got PACER to help me deal with the problems we were having with school. They had no idea. Now, if their kids were "normal," I would have just chalked this up as educating them about the trials and tribulations of raising a special needs child, but these were parents of grown children who had shared many of the same struggles, and they had no idea these resources were out there.

So that brings me to my proposal. I propose that every time a child or teen with a diagnosis that might qualify the child for special ed services or an IEP, etc. is seen, that the physician or care provider as the parent specifically how things are going with the IEP and if they feel they might be helped by Children's Mental Health or PACER. I say this because while I knew about these services, I was so stressed out by everything that was going on with my son, I had forgotten about them. Had I been reminded or asked about them when I had my son in to see his doctor about the behaviors, I might have been able to get help for us sooner.

Tags: mental health


Posted by @shawnaweber, Jul 13, 2011

I agree. I think it's a load of crap that people are unable to get the help they desperately need and the resources are there, BUT, somehow, nobody will tell you that there is help available.


Posted by @rickyrhea, Jul 13, 2011

Had this been in place, we might have avoided a hospitalization. I mean, I have no regrets--I made the best decisions I could at the time, but if I can, I'd like to help other parents not go through the same struggles I did. There are more holes in the system than swiss cheese!


Posted by @shawnaweber, Jul 14, 2011

My 5 year old has central precocious puberty and is on medicaid so they want her to have an injection every month to suppress her hormones rather than a once yearly, implanted medication. My husband is a C5 quadriplegic and I swear to God, I am only able to stumble across information to help either one of them by accident or because I am diligently trying to figure out ways to help each of them to be able to get the things they need and are entitled to and that are available to them. It's making me insane. Why won't anyone help me?

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