Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.
Over the almost four years since we started asking for help for James, I've learned a lot about asking for help, getting it, and managing all the bits that get blown at me during the process. Despite all the services and support we've already received, there's so much more help we as parents and James will need. Some we won't get. Some will crop up unexpectedly. But I've learned that much of it won't come easy and will need a lot of management.
It starts with hearing something or reading an article. What? A program or service that sounds like it would help James? I'm on it! Or overwhelmed, before I even pick up the phone or call up the browser window. You see, what happens next is something like this:
- Leave a message (assuming contact info is right, which is not always the case), & pray it's coherent to whomever's picking it up. If I am lucky, there is no Phone Tree of Doom involved
- Wait for the call back
- Call them back when you miss the call / Contact them again after a few days without a response
- Complete intake of information, as needed
- Call them back when you miss the call / contact them again after a few days without a response
- Take notes. Lots & lots of notes
- Make mental notes to make time to organize notes (which soon grow into message haystacks around the house); ditto the three calendars that you swear you are going to consolidate
- Speaking of calendars, make notations in pencil or erasable marker, because they will often have to be changed; the events that trigger the changes will be many and fascinating
- Be surprised by things like more paperwork, possible credibility crashes, and extra costs revealed
- Hold on to my temper and be calm and polite when frustrated. Keep asking questions
- Follow up after, with thank yous and/or feedback
There will be paperwork. Further calls and emails to make. Folders, brochures, and pages of web content to sort through. Some of this will have to be worked on while trying to be a mom and keep the house together.
Sometimes my hopes outstrip what is actually available and I have to manage my own disappointments. One positive outcome of my having to leave my job is that I can finally take a few steps back and my desperation that every request *must* come through has lessened. Respite care, for example. That was a year of hitting dead ends and my head hitting the wall as I struggled with the ache of needing respite, not having any money, and having the provider send me mixed messages instead of people. Man, I cried over that one.
Then I asked again (different person this time) and I made contact with a different Vendor. Voila, respite! It didn't happen the way I'd pictured overnight. I came to the realization that part of the respite hours were going to be everyone getting briefed, introduced, and assessed. Even when we'd settled on the people who worked well with our family, sometimes life still throws curve balls. Just like us, the respite folks have family obligations and experience illness & car troubles.
Makes me wonder: How do other people ask for help and what are their helpful managing strategies?