And no, this isn't directed at any readers of my journal. At least not that I know of. I'm just venting.
mnh om
What words of wisdom!
Mnh is an organization for enlightement.
And of course om is a yoga chant.
When I get upset about something, Special K asks with concern "What's wrong?" If it turns out to be something she understands is upsetting, she says, "It's okay, Mommy. Would you like a hug?". If she doesn't think it's upsetting, she says, "Chill out."
I was speculating with Castor last week about Little T's hospital stay. "Will he come home today?" Special K said soothingly "Well actually, sometimes he comes home. And sometimes he doesn't."
My life is filled with lots of things to do and unfortunately many of them are unpleasant and draining. I can't say I'm always sanguine, but I am coping better than I feared.
Here's what helps me:
- Delegate, delegate, delegate. As my friend Jenny says, "these are your rainiest days, so spend money if you need to." I ask myself "Would I enjoy my life more if someone else did this job at least part of the time? I ask this one first, because it's harder for me to admit that other people can do the job as well as I can.
Cleaning and child care are tops of my list here. With both I struggled, because as a stay-at-home mother, I felt like I should be doing both these things all the time. However both can take infinite amounts of time, because they never end. I still have to train someone. And I still do the bulk of both. Someone just helps me.Some folks ask "How can you have servants?" Well the fact of life is if you live in the first world, you have servants, but most of them are invisible to you. There are people paid far less than most people on the Internet w/jobs who make our electronics, clothes and toys, pick crops, wash dishes, etc. Almost all are paid far less than I pay my nanny/cleaner and have worse working conditions. I almost never have the opportunity to say thank you or try to help them in any tangible way. I'm sure my nanny would rather have a nice office job, but due to reasons I won't get into here, this is actually one of the best jobs she has open to her. Not that I pat myself on the back for being better than any other mother. I think most mothers are at least sometimes grateful; Nanny Diaries, not withstanding. What I mean is most working class jobs suck. At least I pay her what I say I will. If she's sick, I try to give her extra hours to make up for it. I'm courteous most of the time and at least never outright rude. And my kids are cute.
Some folks say "I don't have the money for that luxury." Some of you genuinely don't. But some of you have Internet access for recreational purposes, eat out, buy clothes, electronics, computers, new cars, and/or other luxuries. These things involve money and servants just as much as hiring a nanny or cleaner does. Personally I'd rather have a cleaner every other week than eat out with the family. But my point is that most of you do have discretionary income and make your own choices on how to spend it.
- Time relaxing is not wasted time. Your body and mind need time to rest. If you don't rest, you actually end up doing less, because your battery winds down. You need to recharge your mind and spirit. What recharges you is different for everyone. I used to think it was sitting around meditating or being still. Maybe I'm not evolved enough to do this, but I find it makes me more restless. Letting my mind wander too much right now is a bad thing. I start worrying a lot. But reading a book, talking to C, watching tv and reading and writing certain kinds of email, and taking leisurely walks with Special K and Little T all recharge me.
And now I have to go back to the hospital, but I'm glad I got a chance to recharge a little.
I wish I'd known about CCS when I was a child. But then I might not gotten services anyway. It was a royal pain to get approved. His hospital sent the original request in October. And we've only been approved, several more steps away from actual therapy. Even though Little T clearly qualifies, his diagnosis didn't fit their standard list. I kept calling and Little T's OT did as well. Finally CCS reopened the case and then approved him.
I took a negotiations class at Haas. The skills I've learned are invaluable in dealing with government agencies like Early Start or CCS, or even sclerotic customer service organizations. I used the methods described below to get a full cash refund from Fry's on a laptop that I had opened and returned after the deadline.
- 1. I keep a record of names, numbers and times. Otherwise they all get confused in my mind.
- When I talk to someone, I address them by name. I'm always polite but persistent. I need help and I tell them why. My voice has a tone of urgency and concern. That person has the power of information or is a gatekeeper. I want to give them the satisfaction of helping me. Most people get pleasure from helping someone who's appreciative. And I've found that polite requests for help are rarely refused.
- If the person can't help me, I ask for the name and number of someone who can. I don't end the conversation until a)I've either gotten the answer I need, or b)a date to call back to get the answer I need, or c)the name of a person who is supposed to give me the answer.
For Early Start and CCS in particular, here's what I did.
- I made a request by calling their main number.
- In week or two, the government agency is supposed to send me a letter with a case manager who's evaluating his eligibility.
- I hadn't received the letter in two weeks, so I called and asked if he had an application open.
- I carefully read all the documents I've given. Often government agencies are required by law to do certain things which is outlined in one of the documents. The document is often faded with tiny type.
- I called the case manager and introduced myself.
- I used the method I described above to go through all the steps needed to get treatment for Little T.
- Evaluation interview or review of medical records
- Approval
- Referral to an agency who will provide the services
- Agency assigns a person who will actually treat Little T
- Person makes first apt to see Little T
After 4 months and numerous calls to Early Start, they sent a wonderful therapist to our house. The scheduler initially gave us an initial evaluation interview that would have pushed things out too far past the 45 day deadline. I said "I read in the Patients Rights and Responsibilities that the IFSP must be completed with 45 days of the referral. If I have the interview two days before the deadline, that doesn't give enough time to complete the IFSP, does it?" She said no, but this was the date she had. I asked who managed the schedule and she gave me the name of her supervisor. I called and got an earlier time.
And now you know one of the many reasons I don't work outside the home. It's a job in itself to get services for Little T and manage his appointments.
Do you have any tips for dealing with government agencies? Please comment here.
In the beginning some of Little T's doctors and nurses commented on it, and it seemed to impress them. It helped us seem better prepared and more involved parents. I think this may have contributed to better treatment, since so far we're pretty happy with the level of care we've received.
Also we now have a pretty good record of his history. Sometimes we go back and look at how bad things were to see how far we've come.
I also use an electronic calendar with all his apts, reminders about following up on lab results, ordering medical supplies, taking regular photos etc.
If your child has a physical condition, I also recommend taking photos or video at regular intervals. Many doctors don't do this as normal part of their practice, but we've found it really adds a lot of useful info. If understanding size is important in your photo or video, it also helps to take it with a reference object. In our case, we take a photo with our child next to a DVD case.
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