Saturday, December 21, 2013

Laura Pogliano, my dear friend and mom advocate in Maryland, writes about her experience of having a child with serious mental illness vs. a child with any another type of illness:

“Your child is not homeless. Your child is not incarcerated for years. Your child is not maligned in general by society. Your child's illness is not romanticized or mythologized with ideas like "Madness is Genius." Your child’s illness is not part of the Gun Control debate. Your child is not automatically part of the legal system. Your child does not have a Preventable Tragedies national database. Your child is not a throwaway. Mine is all of these things.” – Laura Pogliano, mother of mentally ill child, Baltimore, MD

More from Laura:

Your child's illness gets 500, 000 likes on Facebook when you post a picture or ask for prayers --
My child's illness gets about 5, from people who already know us and know of our struggle

Your child's illness gets copious amounts of tax dollars to fund more research for cures; your child's illness has a congressionally approved budget --
My child's illness gets funds cut by 25-40% due to the sequester, or whenever social services are on the chopping block, which is nearly every single time a budget is passed

Your child's illness gets the sympathy of complete strangers, world wide --
My child's illness gets labeled by people in the press every day: pscyho, headcase, lunatic, maniac, nutjob, monster, freeloader.

Your child's illness gets insurance coverage so he can actually get well --
My child's illness gets 30 days coverage per year, with an average inpatient stay of 11 days, with no social workers, therapists, or psychiatric coverage.

Your child gets after care support, medically, socially, economically --
My child's illness is left to the charity of dot.orgs, with programs we don't qualify for due to income or non-compliance with medication

Your child's illness gets treated in the ER, and quickly --
My child's illness gets ignored in the ER for an average of 24 to 30 hours before he's seen.

Your child's illness has specialists trained in care, both inpatient, and afterward --
My child's illness has policemen to handle it, who know nothing thing about appropriate care

Your child gets a diagnosis through medical means and exhaustive testing --
My child's illness is diagnosed through symptomology, depending what he does that day in front of a doctor, and gets readiagnosed multiple times

Your child's illness has a typically standardized treatment plan and medical path forward to health, even with rare conditions --
My child's illness is a quagmire of trial and error with medicine until you hit a combo that works: average is 10 different medications over 3 to 5 years

Your child's illness, unless terminal, is aggressively treated due to a high expectation of recovery and health --
My child's illness has an overall low expectation for recovery and he's relegated to a back ward and warehoused, if there's even a spot available

Your child's illness gets everything that can possibly be done medically to alleviate symptoms or put the disease into remission --
My child's stabilization period is 10 years. TEN.

Your child's illness gets fundraisers that people gladly attend and give to, generously --
My child's illness bankrupts almost every family, with self-pay services, and no fund raisers

Your child's illness has medical records that are robust and shared with cooperating and follow-on hospitals and doctors --
My child's illness has medical records caregivers are banned from seeing, which never follow the child to the next medical facility or ER

Your child's illness is a medical tragedy --
My child's illness is a "social problem"

Your child's illness is treated in hospitals, with the full attention of caring staff --
My child's illness is treated in JAIL, in solitary confinement, often without medicine

Your child's illness is a family heartbreak story --
My child's illness requires a standard of dangerousness be met before anyone is allowed to intervene, and when he does meet the standard, it's often too late

Your child's illness is never a legal dispute or legal issue: it's scientifically and medically verified --
My child's illness requires laws be passed, that are then not funded or implemented, just to get him to life-saving measures

Your child's illness is acknowledged as a medical condition --
My child's illness is a labeled bad behavior and parents get the blame

Your child's illness is considered a medical disability on its face --
My child's illness requires lawyers to apply for disability, with an average number of applications: 9

Your child's illness, when very active or critical, is immediately treated as an emergency and forwarded to a specialist for follow on care --
My child's illness, when very active or critical, gets him, at best, a 72 hour hold, then he's released to the streets with a recommendation for follow on treatment and no medicine

Your child's illness is afforded the cooperation of caregivers and parents to attend to it --
My child's illness is left to the Right to Refuse Care Laws, leaving him to get as sick as he can possibly be, and choose suicide, death, starvation, continued illness with severe brain damage

Your child is never arrested or jailed because he's sick --
My child is almost always arrested at some point

Your child's illness is comforted by those who love him, and you --
My child's illness means friends drop us, family turns away, and jobs are lost

Your child's illness indicates the need for family involvement and care --
My child's illness indicates the need for family involvement, but we're excluded unless he signs waivers, which he often too sick to do

Your child's illness, if you did not treat it, would mean a criminal charge against you for neglect and child welfare agencies would remove him from your care --
My child can't be brought to treatment unless he chooses it, when he's incapacitated cognitively, and he can die at the hand of policemen, be shot at, hang himself or kill someone else.

Your child's illness means he's helpless and needs attention, and he gets it --
My child is expected to pick himself up by his bootstraps and Try Harder

Your child can have any bed in any hospital in the country, across the board --
My child can ONLY have a psychiatric bed, and there's an estimated deficit of 100, 000 beds in this country, and the wait for one can take 6 months or longer in some places

It's encouraged to ask about your child's illness and progress and sympathize with your plight and ask what help they can offer --
No one ever asks about mine, and when they do, I get low-brow, upsetting questions like: How many personalities does he have? Do you let him have a gun?

Your child can tell people he's sick --
My child cannot, or he won't get a job, or a date, or an apartment.

Your child can get a fun trip sponsored by an organization that assists sick children --
My child can't go on any trips, usually, and neither can his family...

Your child is not homeless. Your child is not incarcerated for years. Your child is not maligned in general by society. Your child's illness is not romanticized or mythologized with ideas like "Madness is Genius." Your child is not part of the Gun Control debate. Your child is not automatically part of the legal system. Your child does not have a Preventable Tragedies national database. Your child is not a throwaway. Mine is all of these things.

Your child got sick through no fault of his own. So did mine.

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