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Is TPGA Committing Tax Fraud?

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Since today is tax day, I’m republishing this post for those of you that may be tempted to write off donations to this organiation as tax-deductible.

 

It’s hard to know which non-profits are really worthy of support, especially monetary support. We’ve all heard the numbers about Autism Speaks and how so much of their funding goes to fat salaries for upper management, rather than services. We have to do a little work to be educated about which organizations are trustworthy and deserving of our support, especially when it comes to making donations. Autism families are already stretched thin, financially. I know we are, which is why I’ve always made it a practice to verify an organization’s tax-exempt status before donating money or offering support.

As many of you may know, Thinking Person’s Guide to Autism accepts donations and assures the public that they are tax-deductible. Their page states that they are owned by the Myers Rosa Foundation, which is a partnership between Shannon des Roches Rosa and Jennifer Byde Myers. The Myers Rosa page states clearly that they are a non-profit, 501(C)3.

tpga screen shot

 

myers rosa2

If you have donated money to them, you may need to consult a tax consultant. I’ve confirmed with the IRS that the Myers Rosa Foundation does not have a non-profit status, nor have they ever applied for one. Ever. There has never been a form 990 filed for them, which is required of non-profits. They filed as a corporation in 2011, and never filed for 501(C)3, yet they are claiming to be a non-profit. Additionally, last week I contacted Shannon de Roches Rosa for verification of the organization’s tax status and received no reply. This evening I contacted Jennifer Byde Myer and she confirmed that they had never filed for non-profit status.

myers rosa

As a self-described advocacy group, I think it’s important for the public to know that they have misrepresented themselves and have taken money from autism families under the guise of being a non-profit organization when, in fact, that is not the case. I know we all want to support organizations that represent our children, and this is probably shocking to many of you. It was to me. More than that, it was a disappointment. It makes it so hard for any of us in the community to know whom we can trust when an advocacy organization can’t even be trusted.

Beyond the issue of public trust, there is also aspect that TPGA actively works to direct the conversation about autism in our community, while also calling into question the ethics of other organizations. It lends no legitimacy to cry foul on how Autism Speaks delegates their funds when you’re casting that stone from a glass house.

I encourage you to call the IRS yourself to verify this information. You can also go to Guidestar.org and verify that you won’t find them listed.

There was originally no intention to post this information, but I’ve decided that this information is something that the autism community needs to be aware of. We spend so much time working our tails off to get our kids the supports they need, often at the expense of our own well-being. And to have an organization taking advantage of our families by misrepresenting themselves is a breach of our collective trust.

My hope is that this will be a good lesson for all of us, to research organizations before we choose to align with them or donate our time and money.

Edit: According to Linkedin, Shawn Myers (husband of Jennifer Byde Myers) is listed as the founder and Director of Myers Rosa Foundation from 2010 to present.

Welcome to My Autism, Please Go Away

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How to explain what goes on inside my head, the way I think and experience the world?

 

Most of the time I am existing in a state of near-exhaustion. I know that everyone is tired, especially parents; and most especially, parents of children with special needs, because they often have disrupted sleep patterns.

 

I sleep just fine, which is to say, I could easily sleep for 14 hours a day. Normal daily encounters leave me drained. I don’t like talking on the phone, yet I do it all day at work. I feel tense when the phone rings because I don’t know what the person calling is going to want, and I don’t like not being prepared with an answer. If I have to talk to coworkers to gather information, that’s even more tiring. It’s not that I can’t talk to them, and sometimes I even enjoy it, it’s just that it demands so much energy. I’m hearing what they say, listening for the tone and trying to take in the body language.

 

My brain never stops working. I put great thought into the most mundane of tasks. Before I drive to the post office to drop something in the mailbox, I think about the drive there. I consider what I’m dropping off, whether I’ve addressed it properly and affixed the correct amount of postage. I think about where I will be driving afterward. All of the thinking and planning I put in leaves me fatigued before I’ve even started the car.

 

Getting together with friends is especially challenging. I enjoy being with friends, for the most part. But again, I have to think about where we are going, what I will eat at the restaurant, what I will wear, what we will talk about. I consider what questions I will ask my friends about their lives and families. How will I respond if they’ve had bad news recently? How will I reply if they ask my advice about something? My mind busies itself with all the possible conversation scenarios. And what about my life? What do I feel comfortable sharing with them, and what do I hold back? Do I tell them about the stress of having my mother live with us, or will I sound callous and uncaring? How much do I share about Connor without being disrespectful of his autonomy?

 

This is the reason I have few friends. There’s so much effort that goes into a relationship, I couldn’t possibly keep up with any more. My husband and I have known each other for so long that it’s a comfortable space, a place where I don’t have to think so much about everything I’m saying and doing. I envy others that feel that sense of ease throughout their day, without over-thinking and analyzing every encounter.

 

As I exited the bathroom stall at work today, I saw a coworker from another department at the sink. I felt the anxious knot tighten in my throat as I realized I would need to make small talk. I remind myself not to blurt out that my job makes me feel like a factory worker, but takes place at a desk with virtual paper instead of at a conveyor belt filled with parts of widgets to be assembled. I remember not to say that I feel like my soul is slowly being leached from my body every day. Saying those things would be “inappropriate.” Instead I ruminate over how we inquire how the other is doing, and always receive a reply of “fine” in return. It’s ironic to me that we consider those conversations to be “normal” when they’re built on white lies.

 

I try to focus in on her hair and her clothes. Maybe there’s something different there that I can use to pay her a compliment. I catch myself staring at her hair and immediately feel like my gaze lingered just a moment too long, and now I’m sure she’s thinking I’m really very strange.

 

As I dry my hands, I want to comment about how wasteful we all are when we know full well we’re destroying our planet and that global warming is a fact accepted by most of the world. To me, that seems much more pressing (and interesting) than a new pair of sandals. But I know better than to say that, because I will get that look I’ve seen before, where I’m being sized up behind the person’s eyes and they are judging me to be a weirdo.

 

Fine. Keep destroying the planet then, you’ll be sorry eventually.

 

“Cute sandals,” I say.

 

“Oh, thanks! I got them on sale at Macy’s,” she replies.

 

I fumble around internally for an appropriate response. “Oh, I LOVE Macy’s!” There. That should be okay.

 

And I leave the restroom, exhausted.

 

But it’s not just all the effort and thinking that goes into every conversation and task that leaves me forever on the verge of collapse. I don’t know if it’s like this for other people, because I’ve never asked. That would, of course, involve a complicated conversation that I’d rather not have. The other thing, for me, is that I have this…I don’t know…condition? where I sort of absorb other people’s feelings.

 

And how to explain that? If someone is angry, I can feel it inside. It rattles me and distracts me. It’s almost like the air around me is charged with the emotion they feel. The same goes for other emotions, such as sadness. I suppose I could say that it’s like I absorb those feelings like a sponge. I wrestle around with them inside me, fighting over control of my own emotions. But I always lose the fight, and my own feelings are wrested away from me as I’m forced to exist within the anger or confusion or embarrassment of someone else. And they don’t even know this is happening, that their feelings have taken me hostage. It’s not their fault, really, so why should I tell them?

 

I can’t help but think that none of what I’ve described even comes close to really conveying my internal processes. I just don’t have the ability to put into words the complexity of and relentlessness of my thoughts. But here’s what I do know: I would change it in a second if I could. To be a freer version of myself, without being bogged down by anxiety and worry would be sweet release. I would still be the same me, but a better, less exhausted me.

 

I would like that very much.

Candlelight Vigil for Autistic Children Who Have Lost Their Lives After Wandering

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Today the autism community has decided to honor those children that have lost their lives after wandering.

 

vigil

 

This event is a virtual candlelight vigil to remember and respect the lives of autistic children who have died after an elopement.

The Kennedy Krieger Institute reported in a 2011 study that up to 48% of all children with autism will engage in wandering behavior or “elopement,” which is defined as the tendency to leave a non life threatening space and enter into a potentially dangerous one, and is a rate 4 times higher than their neurotypical siblings.

The Krieger Institute also reported that “35% of families with children who elope report their children are “never” or “rarely” able to communicate their name, address, or phone number by any means.”

In 2012, the National Autism Association reported that “accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.”

This vigil is being organized to spread awareness of the very real issue of wandering behavior in autistic children and the unspeakable tragedies that can, and have occurred as a result.

Please join us in respectful remembrance of the children who have died.

Information compiled by the organizer, Jill Smo, of Yeah. Good Times.

Kaitlin Bacile
Au-Juna Banks-Taylor age 9
Ryan Barrett
Christian Baucom age 6
Jason Baucom
Adam Benhamama
Owen Black age 7
Aiden Bower age 4
Ashley Brock
Noah Burke
Carolyne Burns
Dena Burns age 6
John Burton Jr. age 7
Colum Canning
Kaymania Catt age 5
Alex Christopher 6/3/2005
Zachary Clark
Jeremiah Conn age 6
Holden Cottingham 2013
Taariq Cross age 7
Christian Dejons
James Delorey
David DeSantiago age 11
Devonte Dye age 5
Tatiana Eiland-Clinton age 3
Devine Farrier
Justin Gore Jr.
Darryl Gosein
Anthony Guerra age 9
Tristian Guffey
Liam Hamilton age 7
Elizabeth Hathaway age 10
Savannah Hauser
Benjy Heil
Jack Hensley
Emily Hope
Drew Howell age 2
Tristin Jeras 7/26/2012
Aiden Johnson
Marquail Johnson age 8
Jackson Kastner age 4
Kesia Kearse
Nathan Kinderdine
Michael Kingsbury age 7
Adlai Kugblenu
Anthony Kuznia age 11
Bernard Latimore
Aiden Lawson age 3
Kieran le Couteur
Erik Lippmann
Alexie Loper age 4
Mikaela Lynch 5/15/2013
Charlie Manley age 16
Savannah Martin 2/20/2011
Donivan Martin age 16
Savannah Martin age 7
Jared McGuire
Mason Medlam
Logan Mitcheltree
Christopher Morrison age 5
Blake Murrell age 4
Alyvia Navarro age 3
Avonte Oquendo age 14
Dominic Overton
Ariana Pivacheck age 9
Evan Reed 2012
Hannah Ross age 7
Blake Ryan 4/19/2011 age 4
Christina Sankey age 29
Luke Selwyn
Nicholas Shaffer age 12
Kaleb Shavers age 6
Kadeem Shillingford age 15
Jonah Smith
Julian Stacey New Zealand
Aaron Steele
Travis Stratton 3/1/2014 age 4
Kaliya Sullivan
Sean Taglione 1/29/2012 age 12
Desmond Thomas
Kristina Vlassenko age 10
Christopher Wakeman age 23
Amarie Walker age 4
Skyler Wayne
Freddie Williams age 13
Davin Williams age 15
NNR age 5 Bradenton, FL
NNR age 11 Stafford, VA
NNR age 12 Houston, TX

90 children. These are the names we were able to compile on short notice, and is in no way comprehensive. The listings at the end with the initials NNR are children whose names weren’t released to the media.

 

Today is about remembrance. Please use the above photo as your social media avatar and share this day with us. Let today be the day that we stand together and quietly remember those we have lost.

Autism Acceptance Must Begin Within the Autism Community

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In case you’ve been living on a deserted island and didn’t know, April is coming and it’s kind of a big deal because it’s AUTISM ACCEPTANCE MONTH.

 

Take the current number of inspirational autism memes and multiply them times 10 to the 8th power. Puzzle pieces will clutter your Facebook feed like rainbow glitter, and people will tell you how important it is to buy blue light bulbs.

 

I’m the first to admit that I lean heavily toward the curmudgeonly side, so all this hoopla only serves to raise my stabby meter to defcon 1.

 

The ugly truth is that all this awareness propaganda is pointless when we can’t even accept people within our own community. There are more points of contention than I can even keep up with. Here are just a few:

 

  • You should not strive to alter your child’s autistic behavior AT ALL
  • You should help your child learn to be part of this world and teach them functional behavior (which may alter their autistic behavior)
  • You should ONLY paint autism as a positive attribute
  • You should not paint autism as just a happy, wonderful state of being when there are real detriments for some on the spectrum
  • You should treat autistic people equally
  • You should monitor what you say to an autistic person
  • If someone doesn’t like their autism, it’s because of someone else’s influence (evil parents or doctors)
  • Autism is different for each person
  • If an autistic person is aggressive it’s not because of the autism, it’s because they’re being abused or have “other” issues
  • Autistic children are not “drawn to water”
  • Autistic children often enjoy the sensory input of water play
  • We should devote funding to research to find a cure for autism
  • Wanting to cure autism is eugenics
  • ABA therapy is a proven intervention that helps children with autism
  • ABA therapy is harmful and abusive

 

It seems unreasonable to demand the acceptance of the general public when we cannot even accept differing viewpoints and opinions within our own community. While many choose to see autism as a positive part of themselves, something to be proud of, others who may be more affected sometimes do not appreciate the challenges that autism creates. Yet to voice that within the community will garner a swift and immediate response from legions of angry autistic villagers who will use words like “bigot” to try and eradicate any negative statements about autism. Ironic much?

 

Frustrated and discouraged parents that are coping with an aggressive child will seek out support in the community, but will often find themselves being accused of causing the aggression by being abusive in some way. Rather than seeking to empathize with these families and bring them into the fold with kind and sincere advice and insight, they’re more often than not driven away by unfounded accusations and mockery. And once that happens, you will never get them back.

 

Time and again I ask other autism families whether they think we can build a community where each person is accepted wherever they are on their journey, and whether we agree with their feelings or not. The answer I always get back is “That would be wonderful if it could be that way, but so far it hasn’t happened.”

Isn’t the entire point of awareness to educate people about how different autism is for each person? While one person embraces their autism, another may curse it. And that should be okay. Awareness isn’t about policing people’s feelings, it’s about sharing information. If another parent wants a cure for autism, it doesn’t really bother me. I don’t happen to believe we will find a cure, but if that’s what they wish for, then let them. Their hope to see an end to autism is really a hope to see suffering and pain erased from their own child. That’s where they are on their journey. It’s not my job, it’s not YOUR job, to make them wrong for feeling that way.

 

Another parent may swear by the benefits of a specific vitamin regimen. I don’t happen to buy into it, but let them try. As long as what they’re doing isn’t harmful to their child (bleach enemas, chelation, etc.), then let them give them vitamins. Who cares?

A parent said to me one day that she was at the end of her rope and “hated and despised autism.” I was glad she said it to me, rather than in another forum where she would likely be verbally flogged. It takes a little insight to not react with judgment. What this mother was really saying, underneath it all, was that her child and family were struggling and that she’d gladly take a knife and cut out her own heart to take away her child’s crying, screaming, and mental anguish. There’s something to being a parent, something the know-it-all, 20-year-old me thought she understood up until I actually had my own child. To be a parent means that when your child is hurting and you are powerless to make the hurt stop, you want to destroy that “thing” that is causing the hurt. So when the parent of a young autistic child talks about hating autism or wanting a cure, they are talking about wanting to do anything they can to take away the hurt and pain of their child. It’s normal to feel that way. It’s okay to feel that way. But when those parents are met with unkind words, judgment, and accusations, you’ve only served to kick them when they’re at their most vulnerable, lowest point.

 

As I write this, I realize this community may well be doomed. The hatred and anger is taking up space…the space we should reserve for people that may not agree with us. Whether you love or hate autism, we all want to advocate for acceptance and support. But we only leave room for those that adhere to a rigid mindset of prescribed propaganda.

 

As it stands, most people only know the basics about autism unless they are directly affected by it in their own lives. How can I blame people for not knowing, when the messages coming out of the community are so mixed and confused and filled with volatility? I wouldn’t pay much attention to us either.

 

In short, April can just suck it. It’s just another month of slick marketing campaigns that camouflage the all-out bloodbath going on out back. There won’t be any blue light bulbs or inspirational t-shirts over here. But, as always, if you or someone you know needs someone to talk to because you are in a bad place and feel buried under the weight of autism, please contact me. I will listen. I will not judge you. And I promise I will try and offer you whatever help or resources I can. You can email me at nuttydingo (at) gmail (dot) com.

The Sleepover

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Not to be confused with a movie with a similar title and font.

Not to be confused with a movie bearing a similar title and font.

It’s something I knew would happen eventually, and I’ve been dreading it. You know how kids are when they reach a certain age, wanting to OHMYGOD SPEND THE NIGHT AT MY BEST FRIEND’S HOUSE?!

Otherwise known to parents as the Sleepless Night of Countless Horrors.

I easily could have gone a couple more years without this coming up, were it not for my husband (extreme stink-eye is implied in this sentence). He took Connor over to a friend’s house for the Super Bowl, and his friend’s son, PJ, and Connor got along well. PJ is two years younger, and that matched well with Connor’s maturity level.

Hubs decided to invite his friend and PJ to go along to the kite festival, but his friend’s daughter had a softball game that day. So he and I tentatively discussed the idea of letting PJ sleep over Saturday night so we could take them to the festival on Sunday morning.

Tentatively.

But hubs went ahead and pitched the idea to his friend, and he was on board with it. (Of course he was! You want to take my kid for a night and day? And you’re not charging me? AHAHAHAHAHAHA, I’ll drop him off at 3:00!!)

I waited until last Wednesday to tell Connor. It took about 4 seconds for the news to really sink in, and then he started screaming and jumping and it was kind of a blur after that. He took his exuberance off to the shower, where he set about composing a song to capture the essence of how he felt about this new development.

)

“We’ll play Minecraft all night…”

So it’s no wonder I was having visions of something like this:

Courtesy of bigmediadaily.com

Courtesy of bigmediadaily.com

ALLLLLLLL DAY LOOOOOOOOONG on Saturday, we heard the following:

“When is PJ going to get here?”

“Is it almost time for PJ to be here for the sleepover?”

“Is it almost time for the sleepover now?”

“How about now? It’s been, like, a long time since I asked (8 minutes)?”

Finally I ran out to pick up the obligatory sleepover meal of large pepperoni pizzas, and Connor was so beside himself with anticipation that I could almost see him vibrating.

PJ finally made his grand entrance and, after taking his stuff to Connor’s room, they got down to some pizza consumption and Minecraft discussion.

I quickly snapped a pic of the two of them, before I became too annoyed to want any pictures. Strangely, the camera caught a pic of what was in my head:

Photo enhancement courtesy of Bil "One L" Hooper

Photo enhancement courtesy of Bil “One L” Hooper

I can’t even be sure they actually chewed their food, with so much excited chatter going on.

“But have you ever been to The End? Because, I have.”

“Oh, but have you ever killed an Enderman? I have. I’ve killed a bunch of them.”

“You know what I hate? Cave spiders. They’re the WORST.”

I have never seen my son walk away after one slice of pizza. Not ever. But those two simply could not get to the Xbox fast enough. The shenanigans were under way and they were delirious with glee over this night of male bonding.

After a while, I offered them some cheesecake for dessert. I know, I KNOW! What was I thinking, giving sugar to the little hooligans? I just…it could have possibly been because I’d had some wine. Probably.

But wow, they sucked down that cheesecake. PJ just kept smiling like some kind of clown, so I finally asked him if he’d ever had cheesecake before.

“No, but I really liked it A LOT!”

And then there was some running around, and laughing, and then this:

Also the handiwork of One L Hooper.

Also the handiwork of One L Hooper.

But by 10:00 p.m., the sugar crash started setting in, so I recommended we switch to some low-key video-watching, to which they were amenable.

Cue Despicable Me 2.

Lucky for us, we owned the movie and had already watched it a couple of times because, as it turns out, PJ had seen it too. In fact, he proceeded to earn the nickname “Captain Spoiler Alert” because he liked to drop little nuggets of knowledge, like “Eduardo is really El Macho, did you know that?”

Well we do now.

“Lucy’s going to jump out of the plane because she’s really in love with Gru!”

*pours more wine*

Then, something completely unexpected happened that has never happened in my house before. PJ, in an inexplicable moment of self-awareness said, “I think I’m ready for bed now.”

OHMYGOD, LET’S GET TO BED  THEN!!!

Seriously though, Connor would just keep going and going, until he dropped right where he was. So just before 11pm, I got the two bleary-eyed party animals tucked into bed.

And then I prepared myself for the talking and laughing that was sure to ensue.

And there was much giggling and talking and shushing. BUT, it only went on for about an hour. By midnight, they were both out cold.

SLEEPOVER4

And no one got tattooed or lost teeth, yay!!

We got off SOOOOOO easy. I’m pretty sure next time won’t be nearly this low-key.

Wait, why did I say next time? We’re not doing this again, are we?

I suddenly feel very afraid and alone. Please, send wine…

I Don’t Want a Compliant Child

As far back as I can remember, I was non-compliant. There needed to be a good reason for me to do what someone was asking, or chances were high that I wouldn’t do it. In fact, one of the words I hate most in the world is “compliance”, as well as all its derivatives. Hearing the word makes me feel instant RAGE. It’s not just taken as a personal insult, but as an assault to my person when someone requests or demands my compliance.

It’s just the way I’m wired. My extreme visceral reaction is completely out of my control.

You see, words are alive for me. They’re like art and music, fine-food and instruments of war. The way they’re strung together can create the soaring crescendo of an aria or the somber notes of a dirge. I like the way words taste and feel, the way they engulf me with emotion. Words are powerful tools, capable of defining social and political realms. They give meaning and definition to that which was without meaning. They manipulate. They conspire. They transform hormones and neuron function into awe-inspiring proclamations of love and devotion.

And, of course, they can also elicit strong negative reactions. Merriam-Webster online defines the word compliant this way:

com·pli·ance

noun \kəm-ˈplī-ən(t)s\: the act or process of doing what you have been asked or ordered to do : the act or process of complying

Full Definition of COMPLIANCE
1a: the act or process of complying to a desire, demand, proposal, or regimen or to coercion

b: conformity in fulfilling official requirements

2: a disposition to yield to others
3: the ability of an object to yield elastically when a force is applied : flexibility

Further, they list the synonyms for compliance thusly:

Synonyms: acquiescence, biddability, compliancy, deference, docility, obedience, submissiveness

The moment someone uses the word compliant as a personal expectation, I feel like I’m wrestling to free myself of the yoke being thrown over me.

noncompliant

I’m a dynamic and capable human being, and I don’t want to be docile.

No matter who you are, what kind of job you have, how much money you’re worth, or how important you think you are, I am your equal. I will not be submissive to you.

This is my natural state of being, to value freedom and autonomy above all else, just as it’s the nature of others to follow, to crave routine and rule and structure, to comply. I need free will like I need air and water. While others fear the chaos and uncertainty that accompanies radical individualism, I fear the consumption of my soul by willfully relinquishing my ability to think and do for myself.

For me, compliance is a word on par with indentured servitude. It robs people of fire and passion and leaves in its wake a grinding monotony and grim acceptance of a life painted in hues of beige and gray.

Connor, my beautiful spark of life, burns so bright and white-hot that it hurts my eyes. He is so full of love and joy and spirit that you can almost see him coming apart at the seams. He has no more interest in the idea of compliance than a butterfly has interest in car insurance.

Ah, but public schools…this ugly word is dragged out at almost every IEP meeting. It’s written into goals, as in “Connor will demonstrate compliance with adult requests on at least three out of five trials.”

With all the richness we have to choose from in terms of our language, why do schools choose to apply words to our children that invoke such ugliness? Instead of compliant, can’t my son work on being proactive, cooperative, or accepting? What about amicable or harmonious, collaborative or affable?

We have another IEP tomorrow, and I suppose that what I’m getting at is the way in which the language we choose to apply to someone frames them in specific ways. Do we want our children to be blindly compliant, or do we want them to be thoughtfully cooperative? Do we prize conformity and indistinguishability above individualism? Do we want teachers to measure our children’s worth in terms of compliance, or some other measure?

If we want to see a change in how our children are treated in the public school setting, it may be advantageous to begin by changing the language that’s used in describing our children, and identifying what their goals should be.

Some may say it’s just a matter of semantics, but I would argue that our children will either rise to our expectations or fall under the weight of our our demands. I’d much rather see my son rise and learn the value of cooperation, than to fall beneath the burden of being rigidly compliant.

But again, I’m biased. As a non-compliant person, I tend to buck the system. And I’ll continue to do so, by refusing to never again sign an IEP that contains the word “compliant”.

Are Postpartum Depression and Caregiver Stress Similar?

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After Connor was born, I had postpartum depression (PPD). I remember wanting desperately to escape from my home, to get in my car and just drive and drive until I was far away and alone.

 I’m sorry. That was a rather abrupt beginning, without a proper introductory paragraph. But that’s rather what postpartum is, an abrupt state of being without any proper or formal introduction. You wake up one morning and it’s just there, like a collar placed around your neck, just one notch too tight.

 I remember sitting and nursing with Connor for over an hour at a time. When he’d finally had enough and drifted off to sleep, I’d put him in his crib and steal away like a thief, eager for a quick shower or a simple sandwich. More often than not, he would awaken and begin crying within 5 minutes of being put down. The crying…it was like shards of glass in my brain. The sound set my nerves jangling and my adrenaline pumping like I was in fight or flight mode. I stopped feeling human. I felt like a thing, something to which this tiny screaming baby would forever be latched onto.

 One afternoon, I remember vividly standing on the second floor landing, looking over the railing…

 But I won’t finish that thought, that sentence. I won’t commit it to writing or utter the words aloud because it would be breathing life into a memory that should stay dead. Is it fear, or maybe shame? Or perhaps it’s the refusal to acknowledge the shell of myself that I’d become, unrecognizable to me now.

 There was no judgment. Not from my husband or my doctor. In fact, my doctor was extraordinarily understanding and helpful. He assured me it wasn’t my fault and he could help me with medication. There were so many resources available to me, and I was grateful. And I was fortunate that, for me, postpartum depression ended up being mild. I can’t help but wonder what a more severe case of PPD feels like, yet I’m frightened by the thought.

 The Mayo Clinic explains on their site that PPD is caused by physical changes (hormones, metabolism), emotional factors (sleep deprivation), and lifestyle influences (a demanding baby, difficulty breast-feeding).  PPD is widely recognized as a legitimate disorder and much effort has gone into awareness and education about PPD, as well as resources for new mothers. If you or someone you know is affected by postpartum depression,  please contact your doctor right away. Here is a guide that helps identify symptoms as well as providing tips for help and support.

The reason I’m bringing up PPD is because of the similarities I see between it and caregiver stress and burnout. Parents of special needs children are not just parents, they are caregivers. Whether your child has autism, Down Syndrome, or another disability, the support needs can sometimes be exhaustive. If you happen to have a child that also struggles with serious aggression, your stress and responsibilities may seem all-consuming.

 Unfortunately, there is not as much understanding for families living with serious aggression and finding resources can be challenging. Like PPD, there can be physical changes (brain chemistry), emotional factors (sleep deprivation), and lifestyle influences (a child with major support needs) that occur when living in that environment. Although caregiver stress has not been assigned a medical label or a publicity campaign to bring awareness to it, the effects of providing care to a child with severe challenges is very much like PPD. Ongoing stress can have a significant and long-lasting effect on the mental health of a caregiver.

 Like PPD, you should seek out as much support as you can. Certainly it’s a good idea to see your own physician, but also finding community organizations that can help provide support to your child. This link provides symptoms and support tips for caregivers.

 It is my hope that caregiver stress will someday be seen as every bit as valid as postpartum depression. But more than that, I hope we get to a place where resources and support are just as readily available to special needs families as they are to mothers suffering from PPD.

The next time you hear someone say “there is never a good reason to harm a child”, agree with them. Agree with them because there is nothing “good” about PPD or caregiver burnout, and certainly nothing “good” about harming a child. You can also remind them that the reason doesn’t have to be “good” to be valid, nor does it have to be “good” to be worthy of creating interventions to prevent it from happening to another child.

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