There are some things in life that should be simple. Honestly, they should be simple, because once you are desperate enough to want to do them, you need them done, like, yesterday. There shouldn't be hoops to jump, long waits, strings of phone calls, more wrangling and begging and trying to get it to happen. You've already done all you can stand of that. If you thought you could stand more you wouldn't be...
Asking for help.
I get very angry about comments like, "you should just ask for help!" Or similar comments: "Just call 911!" "Call a therapist/doctor/lawyer!" "Just get an advocate!" "Why don't you hire a lawyer/doctor/specialist?" "Why don't you have Medicare to pay for that?" Then there are the clear judgements. "That person should have [insert one of the previous comments here]."
It really should be that simple. I so wish it was just that simple. A phone call, connect with the professional, get that help in here and get your loved one, your family, yourself much needed help. Desperately needed help.
First, there is the stigma of asking for help. Ever listen to people talking about folks on "welfare"? Or how people refer to people with mental health issues? How about "helicopter parents"? The idea that people who ask for help are somehow weak, lazy, trying to steal or mooch, bitchy, even aggressive- this is the message society hands those who find themselves in a tight spot. It's your fault you are there. Suck it up.
If you are feeling that stigma, don't believe it. Not one word of it. Not one little tiny piece or hint of guilt, or threat, or anxiety. Don't be fooled. Asking for help is a huge, monumental step in the right direction. And overcoming those feelings is just the first hurdle. The small, warm-up hurdle. The one you can do something about with the power of positive thinking and the realization that you need help, deserve help, and have the right to ask for help.
Next hurdle: finding the help.
Ever try to track down a special needs attorney? Or a mental health specialist for a special needs child (or even adult)? Which specialist do you need? Who does what you need in your area? Does anyone do what you need? Are they any good at it, even if they are close at hand? Who do you call?
Connecting with "clearinghouses" and resource information before you actually need it is a really great idea. Just found out your kid needs an IEP? Go to the parent center, the local disability resource center, get on Google, find those possible resources before you find yourself in the morass. Have the numbers at hand. If you have trouble finding them, start asking. Needling. Researching. By the time you are in a place where you need the help, you don't need the stress of not knowing where to turn. Trust me on this one.
Third Hurdle: The Actual Call.
So you call the attorney's office. You get the receptionist. She's a gatekeeper. You may not even get through her, as she asks you several questions that are really none of her business, you want to discuss your answers with the damn attorney, not the receptionist, that's why you are calling. Three receptionists later, you finally get told someone will call you back.
They never do. You call again. You start leaving a string of messages, like a crazed stalker, begging for the help you desperately need. Your messages become increasingly emotional, desperate, pleading. The meeting is a month away. Two weeks away. Next week. The damn meeting is tomorrow, why won't you call me back and help me???
Don't even get me started on our local Project Lifesaver fiasco. Remember, Joey has escaped his school building six times this year. Not the classroom. The building.
Then you call the doctor/therapist/specialist. You manage to get through the gatekeeper again, and have the callback game again. Finally, you get on the wait list... for six months from now. Then you have to call again, and re-sign-up onto the wait list. Some places, you go back to the bottom of the list. Some places forget you were ever on the list. Some places tell you they have no idea what list you are talking about. Sometimes you make an actual appointment six months out, to have it cancelled two weeks before. A week before. The day before. Oopsie, doctor/therapist/specialist is going to a conference that day. Their schedule changed and they no longer have appointments at that time. You go back to the bottom of the list, praying some other poor soul cancelled their precious appointment and you win the lottery for being called to take it.
There are some key words that might get you scooted up the list. I assure you that "my child is suicidal and jumping out of moving vehicles" is not among them. I think "seizure" might be one for the neurologist, because instead of being put on the six-month wait list, we got an appointment within two months, an actual, scheduled event that actually happened. It was amazing. However, since it appears to have not been a seizure, I still think he thinks I'm nuts.
Yep, hurdle four: you finally get to see your specialist, and you end up back at hurdle one: being judged a pushy, bitchy, crazy parent who just needs to pull up their big girl panties and deal. The lawyer tells you to "stand your ground." The doctor gets all "concerned", but when you get the report, it says nothing about being referred to intensive intervention or that anything observed was in any way problematic, despite their apparent "concern" when you were standing in front of them. The therapist gives you some stuff to "try at home" or a list of "recommendations" that say nothing about them being actually necessary. You aren't even sure they are specifically relevant to your child.
It's like they have no idea why you called. Or what you went through to get to the point where you felt the need.
Let's say you get over hurdle four. They agree to help, and actually start to do something. Now you have to pay for that.
Welcome to hurdle 5. See, your medical insurance doesn't cover that therapy or service or doctor, because it is related to your kid's special needs. Or they consider it educational. Or you live in a state where they can basically exempt themselves from anything they want, despite having a doctor proclaim treatment is needed, effective, and available. The school won't pay for it, because it isn't through their people, or they consider it medical. I have no clue how anyone pays for a lawyer. I suppose if your case is super-blatant, they take you on contingency? Or you have wealthy relatives? Or a major bake sale? Take out a second mortgage, hoping you both win and get some cash to cover your costs in the settlement? What if, despite everything, you lose? How can you leave a child in what you know is an inappropriate, even dangerous, setting, even though the courts tell you it's just fine and all legal?
I haven't even tried the social services debacle yet. I just have the stories of friends to consider. Calling in social services seems to be asking for trouble. I have friends who just decided to end SSI. They still qualify, but it was such a pain they couldn't deal with the stress of the paperwork anymore. They would get things their kids needed, be told it was ok, turn in the receipts, and be told that it actually wasn't OK and they had to pay back the money- which they used for this item that their kid really needed. All those stories of people living off their special needs kid's "check"? I have no clue how you would do that, since you have to justify every expense you use the money for. Besides, my friends were tired of being vilified for getting income to cover their kid's medical expenses. Remember, people on "welfare" are all "welfare queens." People who need that money are reminded of that everywhere they turn. Welcome back to Hurdle One.
This is all the epitome of idiocy. A family needs help. They call for help. They should get that help. Immediately. Easily. Readily. Respectfully. Asking for help should not cost you your health or your dignity. You should not feel you might be paranoid, wondering if you are doing the right thing. Wondering if there was more you should have done before reaching out. You shouldn't have to beg, plead, and sell your first-born child to get it.
By the time you ask, you are already saying you are overwhelmed, stressed, and need help. Adding to the stress isn't helping. Judging those who are trying not to drown in deep water by asking why they don't just swim isn't helping. Tossing a rope that is too short for the drowning person to reach isn't helping.
It should be so simple. It needs to be simple. Why can't we just make it simple?
Thursday, May 15, 2014
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