Category Archives: The MOTHERS Act

NIMH Gets Failing Grade for Perinatal Mood & Anxiety Disorder Chat

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Last week, a friend of mine tagged me in a link on FB to give me a heads up about a NIMH chat this week about Perinatal Mood Disorders. Of course we were looking forward to it and hoping it would be a worthwhile discussion. I nearly missed it on Friday morning (May 16, 2014)  thanks to a nasty case of food poisoning which knocked me off my feet for the better part of this week. But, I managed to dive in just 10 minutes into the chat.

It was…….awful.

Stilted.

Non-engaging.

Spouting of facts and just the facts, according to the NIMH. (They managed to screw up a few things. Don’t worry, I’ll go there. Oh, yes, yes I will.)

Self-promotion and only self-promotion. No real response to the powerful Perinatal Mood and Anxiety Disorder Advocates who showed up until we started really pushing back. Even then, their response was still stilted.

Just when it seemed it couldn’t get any worse, the NIMH began repeating tweets from the beginning of the chat instead of answering the flurry of questions coming in from those participating.

If NIMH handed this chat in as a graded project, it would have received an F.

When I asked what was being done to encourage medical professionals to become better educated about PMAD’s, this happened:

NIMHChat Congress

Yep.

Congress MANDATED we pay more attention to PMAD’s. In fact, it got shoved in with the ACA. And we all know how well that’s going. After this response, I asked a follow up question asking how that was going – asked for hard numbers. Did I get numbers? Nope. BECAUSE THE ATTENTION MANDATED BY CONGRESS LACKS FUNDING AND THEREFORE ATTENTION.

I’m okay, I’m okay. *deep breath*

There was also this lovely moment in chat:

NIMHChat Snafu

I know, right?

Because we ALL got better by staying in bed thanks to depression, right? Right?

Instead of urging moms to get up, move, and care for themselves, the NIMH  provides them with excuses to stay in bed and well, suffer. Way to go, NIMH. WAY.TO.GO. *slow claps*

While I realize it is difficult to manage a large scale chat with several participants (something I have done myself, when #PPDChat was very well attended), there is absolutely no excuse for the following to happen during your chat:

1) Blatantly state misinformation/misleading facts about your topic. Particularly if said topic is subject to entrenched stigma and misinformation (which is why you are having the chat to begin with, right? Not because it’s a hot topic and you’re using it to draw people in…)

2) Not engage those who are participating – this is SOCIAL media, y’all. SOCIAL. ENGAGE. Like Jean Luc Picard on the bridge of the Enterprise. Even if you’re just going at impulse speed, ENGAGE for the love of ALL that is..well, you know.

3) Don’t repeat yourself word for word. It lets people know you’re unprepared.

4) Share resources other than your own. (see number 2 about social media).

5) Do NOT TREAT those participating with disdain, contempt, or as if they are idiots. They are attending your event which would be nothing without participants. Respond accordingly unless they are clearly bashing you (which we were not) and if they are bashing you, ignore them before you stoop to the level of responding with disdain.
Things to do during a Twitter chat:

1) Engage. Be Social. Greet people. Be happy and upbeat. SMILE through your keyboard.

2) Be knowledgeable and approachable.

3) Treat everyone as if they are your equal. They are there to learn, not to be kicked. Acknowledge their words, their struggle, their questions with the same respect you expect from them. You know, do unto others as you would have them do unto you.

4) Offer insight through connections and share resources from others in addition to your own. The only answer is not yours. Crowd-source and use the media at hand to enhance your chat.

5) Do your best to make everyone be heard, even if it’s through just RT’ing what they’ve said. Again, I realize this is difficult on a LARGE scale but if you have known experts participating, acknowledge them.

I truly hate when things like this go wrong because there is such a tremendous opportunity for exposure when a government agency holds a chat like this. I want to say I’m surprised at how things went but sadly, I am not. Instead of raising awareness and building hope, NIMH decimated the chat with a lot of tweets about nothing, leaving at least one person (and possibly more) with the idea that there is in fact, nothing a mother can do to prevent a PMAD:

NIMHChat PPD cause

And that, dear friends, is NOT the taste you want to leave in the public’s mouth when discussing PMAD’s. Because there is hope. There is help. We are not alone.

Go to Postpartum Progress to find women who are fighting back.

Or Postpartum Stress Center’s website.

Or Beyond Postpartum.

Or find me on Twitter @unxpctdblessing. Or search the hashtag #PPDChat. Message me for the private FB group full of women who KNOW this is hell and yet are fighting back against it with everything they have.

We’re all here for you when you’re ready to reach out for help.

(And THAT is how you end a chat about Postpartum Mood & Anxiety Disorders).

*drops mic and hits publish*

Just Talkin’ Tuesday: The MOTHER’S Act

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LegislationOn February 23, 2001, Melanie Stokes gave birth to a baby girl. Just three months later, she committed suicide. Melanie’s death gave birth to a very dedicated activist – her mother, Carol Blocker. Frustrated with the failure of physicians to appropriately care for her daughter, Carol worked endlessly to keep Melanie’s tragic death from becoming meaningless. Through Carol’s tireless advocacy and work with Representative Bobby Rush (IL), the Melanie Blocker Stokes Act has now become The MOTHER’S Act.

The MOTHER’S Act as it reads in the current version would provide funds for a public awareness campaign, education campaign for caregivers, increase availability of treatment options and entities as well as require the current Secretary of Health & Human Services to conduct a study regarding the validity of screening for Postpartum Mood & Anxiety Disorders.

More and more research is slowly uncovering potential underlying causes and risks related to Postpartum Mood & Anxiety Disorders. More and more women and caregivers are becoming educated as more of those who have survived a PMAD speak up to share our story.

If passed, The MOTHER’S Act would further reduce the stigma surrounding new mothers not ensconced in the Johnson & Johnson glow of infantdom. If passed, the MOTHER’S Act would increase funding for research and possibly open even more doors to understanding the cause and more importantly, the potential for truly preventing Postpartum Mood & Anxiety Disorders. If passed, the MOTHER’S Act has the potential to prevent tragic deaths like that of Melanie Blocker Stokes.

Much of the debate surrounding the MOTHER’S Act has centered on the word “medication.” Medication does not necessarily mean Anti-depressants. It does not mean this is the ONLY way to treat a PMAD. It is merely listed as an option for treatment. And frankly, if one has a doctor with a quicker draw on his/her prescription pad than Billy the Kidd, I’d run away. I’d run away faster than a cheetah.

Another key point of the opposition has been that the MOTHER’S Act mandates screening. In the current version, there is no mandate for screening. The only mention of screening is to require the Secretary of Health & Human Services to conduct a study regarding the validity of screening for Postpartum Mood & Anxiety Disorders. The current standard for screening is the Edinburgh Postnatal Depression Scale, which you can learn more about here.

You can read a copy of the current bill by clicking here.

Go read it. (Don’t worry – it’ll pop up in a new tab/window – I’m cool like that here)

Seriously. Read. The. Bill.

Then read it again.

And then come back here. Be honest.

Unlike this week’s TIME article which failed to present both sides, I promise to allow unedited comments in support of or opposing the bill as long as they are civil. (Any comments including personal attacks will NOT be allowed!)

So let’s get to Just Talkin’ Tuesday already!

TIME Magazine misfires debate on MOTHER’S Act

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Awhile back, I was contacted by Catherine Elton regarding an article which was to examine Postpartum Depression and the Mother’s Act. The email somehow got buried and I did not get a chance to participate in the discussion.

It seems that it would not have mattered if I had been able to discuss my story with her.

Time published the story this week. While the online version has been modified to correct an error with Ms. Amy Philo’s story, you can still see the original version in the hard copy. (Which by the way, I am personally asking you to boycott – even asking if you can take the copy of TIME home from the doctor’s office in order to keep other moms from reading it! And make sure you ASK – because just taking it would be stealing and that’s illegal.)

The original version, entitled “The Melancholy of Motherhood” includes one quote from Carole Blocker, the mother of Melanie Blocker Stokes, a mother who tragically committed suicide after unsuccessful treatment for severe postpartum depression after the birth of her daughter. The quote reflects Ms. Blocker’s confusion as to how someone could oppose the MOTHER’S Act, a bill which is designed to increase public and professional education regarding Postpartum Mood & Anxiety Disorders. Frankly, I’m confused right along with Ms. Blocker.

The only survivor story featured in this article is that of Amy Philo, one of five recipients of an Outstanding Achievement for Mothers’ and Children’s Rights awards from the Citizens Commision on Human Rights or CCHR. CCHR was founded in 1969 by none other than the Church of Scientology, well-known to oppose the entire psychiatric field.

Amy has tirelessly worked against this bill for quite some time now but continues to be tragically misled. Few discussions with her have led to quite the round robin with Amy unable to come up with legitimate research to back up her claims. When asked for said research, Amy refers to her own websites instead of to specific research articles supporting her claims.

I happen to know that Ms. Elton did indeed interview fellow survivors who support the bill. One has to wonder then, why did their stories not make it into the article? Was it length? Was it editing? Or was it intentional? Regardless, the finished piece as published presents a very frightening and deceiptful picture of what new mothers face is this bill is passed. To begin with, the MOTHER’S Act no longer mandates screening. It requires a study to be completed by the Secretary of Health and Human Services (Kathleen Sebelius) as well as funds for an educational campaign for both caregivers and the general public.

I agree that just because a new mother shows emotion she should not immediately be diagnosed as having a PMAD. I also believe that a woman should have free choice when it comes to her treatment decisions and should NOT be judged for those choices. I chose to take Anti-depressants. My first prescription did not work out. But my second one did. Just as with any other medication, sometimes they don’t work so well with your system. So you try another one. You don’t suddenly take your own care into your hands – that’s ridiculous. Would you try to heal a broken leg or diabetes on your own? No? I didn’t think so. So why would you rely solely on self-care when it comes to mental illness? Self-care should be part of the picture but it shouldn’t be the ONLY part of the picture.

I am so tired of being judged and accused of not having informed consent. You know what? When I made my decision to go on Anti-Depressants, I had carried around an informational packet about AD’s & Breastfeeding given to me by the NICU Lactation Consultant with me for a week. I read that thing through and through. I was exclusively pumping for my daughter at the time and did not want to jeopardize her receiving my milk if I ended up having to take something. But I couldn’t function. I couldn’t take care of my family, I couldn’t take care of myself, and a lot of the same thoughts were coming back. Negative, scary thoughts about knives and hurting myself and my family. Yet I wasn’t on anti-depressants. I needed to be able to function. So I made a very informed decision to do so, one I do not regret to this day.

TIME – I am very disappointed in your lack of sharing both sides of this debate. Very very disappointed.

Sen. Menendez holds Press Conference at Valley Hospital

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This past Monday, Senator Menendez held a press conference at Valley Hospital to speak about the MOTHER’S Act. Susan Stone, Sylvia Lasalandra, and Mary Jo Codey were all in attendance.

Emphasized was the fact that the MOTHER’S Act does NOT mandate screening. According to the Susan Stone’s blog post announcing the press conference, Dr. Fred Rezvani, Chair of the Department of Obstetrics and Gynecology at Valley Hospital in Ridgewood NJ, emphasized the need to include all forms of treatment for new mothers suffering from these disorders including nutrition, massage and acupuncture and other complementary therapies, to home services, social support and psychological counseling.

Senator Menendez was presented with a petition of national organizations and individual constituents representing millions of Americans who understand the need for this legislation can no longer be ignored. With the bipartisan support that currently exists for the legislation, its likelihood of passage among the priority of healthcare reform seems likely, but the advocacy efforts must continue! The entire audience expressed their thanks to Senator Menendez for his determined advocacy on behalf of America’s mothers.

~Susan Stone~

You can read more about the press conference by clicking here.

Rachel Roberts crowned Mrs. Oklahoma International

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Last month I featured an interview with Rachel Roberts, then Mrs. Tulsa International.

Rachel Roberts, Mrs. Oklahoma International and daughter

Rachel Roberts, Mrs. Oklahoma International and daughter

Rachel has gone on to be crowned Mrs. Oklahoma International and will be competing this July at the Mrs. International competition in Chicago, IL. Rachel was crowned by her husband last Saturday night.

As you know from her interview here, Rachel has made her platform Postpartum Depression Awareness during her Mrs. Tulsa days. She plans to continue with this platform as Mrs. Oklahoma and if she wins, Mrs. International. Her website is dedicated to sharing her story and providing resources for others.

“I was fortunate enough to recognize that I wasn’t feeling myself after having my daughter,” Roberts says.

“I want to help other women recognize and overcome this illness.” She adds that she wants to spread the word that it’s okay and there is help out there. “No one is alone and there are supportive people who want to help.”

As Mrs. Tulsa, Roberts has spoken to mothers of all ages, most recently at the Margaret Hudson Program for teenage mothers. She also appears in the May 5 edition of Woman’s Day Magazine in an article about postpartum depression and has worked diligently on helping to get the MOTHERS act passed into law. Roberts will speak at the Perinatal Mood and Anxiety Disorders Components of Care Conference on May 20 and 21 that will be simulcast throughout the state of Oklahoma.

Congratulations on your win, Rachel! Best of luck to you in July!