I’m Sorry, but I Am Not Thankful for My Sons Autism

When my little boy turned a year and a half, he changed. He was this perfect little thing, so cute and loving, silly and playful. He was reaching all his milestones just a bit later than other kids, but who cared? He was my precious baby, it didn’t matter. Until suddenly, he wasn’t late reaching his milestones, he was stalled. His motor skills stopped progressing, his attention span slipped and all of a sudden all those words that we so lovingly taught him were gone. Just gone.

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You can’t imagine the worry when your baby suddenly can’t call you mama anymore. Why he’s suddenly not looking you in the eye and why you need to repeat everything a thousand times until he finally focuses and hears you. You can’t imagine the confusion of trying to get him to say a word that he had learned months ago, only to realize that he doesn’t know it anymore. You can’t imagine it, unless you’ve lived it.

It took a long time to figure out what was going on. Our pediatrician at the time was absolutely useless and brushed away all our concerns. We were young and naïve and assumed that if the doctor wasn’t worried, maybe we didn’t have to be. That’s what we told each other, although inside we both knew we were scared.

When we finally reached beyond the doctor to seek help, things started changing. My little boy got into Early Intervention and they determined he needed speech therapy and occupational therapy to develop his fine and gross motor skills. Our world turned into a web of words we’d never heard before with speech delays, IEPs and therapists.

And still, we knew it wasn’t enough. There was still something missing that we didn’t understand, and that word, autism, had been floating around in our heads for a while. We didn’t want to believe it though. If he only had a speech delay, he’d grow out of it. But the other thing… There’s no growing out of that. We were scared for his future. But you know what? Trying to avoid the confirmation of what we knew in our hearts to be true was not helping him, or us, or anyone. My husband finally convinced me to get him to a different doctor, and we found the answer we knew was there.

Autism. Sensory Processing Disorder. Possible Obsessive Compulsive Disorder. At the time it was nothing but a relief to hear someone say it out loud. Knowing what is going on is important in advocating for my son, and understanding him.

But in all my time online, reaching out and trying to connect with other people raising autistic kids, I kept seeing one thing. “I’m thankful that my kid has autism because…” It is a good sentiment, it really is. And I totally get it. I don’t wish I never had my son, and if I could go back in time I wouldn’t do anything differently (besides getting a diagnosis sooner) but personally, I can’t agree. I’m just gonna say it.

I’m not thankful for my son having autism.

I’m not thankful for sensory processing disorder. I’m not thankful for OCD. I’m not thankful for the fact that a simple noise can send my son into a meltdown. I’m not thankful that he can’t get comfortable in a shirt with a tag on it. I’m not thankful that he can’t read or watch something unless it’s perfect from the very beginning. I’m not thankful that his sensory issues are making potty training impossible. I’m not thankful for his struggles, for his fears or for the heartbreak he doesn’t even know to feel yet when kids say he’s weird and run away from him.

I’m thankful for my son.

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He is a beautiful, crazy smart, silly boy with a huge heart that makes his mommy melt. He takes care of his sister, he gives me the best hugs, and when he’s really happy, his eyes light up brighter than anything else in the world. And when I think of all the things he goes through, all I think of is how his meltdowns take away his smile. They take away the light in his eyes and fill his brain with fog. They change him from loving brother to a distressed kid who will push his sister down to get away from her. They make it impossible to talk to him, to reason with him, to love on him. When he’s struggling, there’s no amount of being “thankful” that will help him. There’s no amount of being “thankful” that will help me either.

My little buddy will be six years old in a couple months, and I know we’ve got a long way to go. I know that as he grows up, he will learn how to handle the stresses in his life in a healthier way. I know he will change some things he does, mimicking his behavior in certain situations to fit in better. I know that, underneath all the struggle, one day he will be okay. I just know that he will grow up to be an amazing man that my husband and I will be nothing but proud of. So maybe one day I will be able to say with total sincerity that I’m thankful for his autism. But right now, seeing how hard every single day is for him, it’s hard to appreciate anything that hurts him so much. Maybe one day I’ll be able to look past the bad, and see the good things it has done in his life. Because I know there will be plenty.

But at this age, with this much struggle, saying so would be a lie.

To the Doctors: This is NOT Okay

 

 

 

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Apparently the Doctors are at it again! I think everyone has heard of the show by now, and just like anything else on TV, they’ve got their fans and their critics. I haven’t watch the show, until today. Until the PMDD community collectively blew up in outrage over an episode where they addressed, you guessed it, Premenstrual Dysphoric Disorder. You can watch it here.

Just a quick summary for anyone who hasn’t heard of PMDD. PMDD has been described as “the evil cousin of PMS”. I don’t like that phrasing, because that makes it sound like it’s in the same family. Let me make this clear. PMDD is as close to PMS, as a rabid tiger is related to a newborn domesticated kitten. This is not to say that PMS doesn’t suck. I remember the days when that’s all I had to worry about, and it sucks. But PMDD is hell.

In the video, Dr. Landry tries to explain what PMDD is. Tries is the key word, because she is interrupted so many times with the men shouting over her, laughing and making jokes, that she spends half that time laughing that uncomfortable “this is ridiculous but I don’t know what to do” kind of laugh. Dr. Landry, many of us who watched this cringed watching you try to get through to them. We aren’t blaming you.

But to Dr. Stork, and ESPECIALLY Dr. Ordon, there is NO excuse for your behavior. And the 2-8% of us who actually struggle with this horrible ailment have something to say to you. I’m only one person, so I decided to get some feedback from the lovely women who struggle every month with PMDD. Here’s what we had to say.

Warning: Some foul language ahead. I normally do not curse on my blog, but I feel it completely appropriate under these circumstances.

“They did a horrible job of explaining what PMDD is. It’s life altering, affects every aspect of life, includes suicidal thoughts and impulsive behaviors like eating, shopping, etc. It’s hard to get doctors to listen because it has only recently been given a name by the MDA. They made it look like a cartoon. And on top of that there is no “quick fix.” solution that helps everyone.”      -Christine H.

“I’m horrified by this episode and will not be supporting this show anymore. As someone who suffers from PMDD I was horrified to see them laughing at my pain. I’ve wanted to murder my husband and no one else for sooo many reasons during my hell week and it has nothing to do with underlying issues, and everything to do with lack of support physically and emotionally. PMDD is a life threatening disorder and those fucking assholes made it into a big joke. I thought we were past the days when men were gas lighting and making women feel crazy and less than because of our cycles. I’m still crying after these doctors just set us back 100 years. ASSHOLES!!!”     -Keltie Jean-S.

“It was incredibly hurtful and irritating for Dr. Ordon to say you should hang out with a woman for a few cycles to make sure she’s not crazy. Women with PMDD are not crazy and just as deserving as anyone else of love…..  His outdated, sexist, insensitive and cruel remarks have no place in a discussion about women’s health. I would like to see an apology from him specifically.”     -Natalie P.

“I would really like to see The Doctors redo this segment and have a sufferer present to offer first hand experience of what it’s like to suffer from PMDD. I doubt jokes like the ones we witnessed would be made to a sufferers face so I don’t understand how it’s ok to broadcast them to sufferers watching at home. Many viewers have found this extremely triggering and it has exacerbated their symptoms. It has also damaged awareness campaigns that people have worked hard on to reduce the stigma of this condition. It reinforces sexist beliefs and provides a terrible role model for Health care professionals. Congratulations doc, you’ve probably just convinced several women not to seek help from their GP.”    -Lynda P.

“I am absolutely appalled at the flippancy of those men, clueless bastards! Their total lack of empathy is disgusting. What’s worse is that they (particularly Dr. Ordon) completely disregarded the idea of compassion and consideration in order to get a cheap laugh from the crowd – is he for real?! Oh, to have a penis and be totally ignorant of female issues. And shame on the ladies in that audience who laughed!”          -Laura Q

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You guys starting to get it now? The complete lack of humanity, the derogatory, misogynistic jokes, the ignorance, need we go on? Probably not, but let’s do it anyway.

“I’m completely horrified by how they behaved on what is supposed to be an educational show. In life, you choose whether you want to do good or want to do bad…these people obviously didn’t even think about what they were saying and what impact this has. This is a very serious illness that ruins lives, relationships, careers and dreams. Acting like sexist jerks DOES NOT help, it makes the situation worse. End this bullshitting!”         -Maite Hein-G.

“How great of you to make fun of something that has almost ruined not just my life but also the lives of the people I love. Because of PMDD I am now divorced. My 3 children are now from a broken home. My dad passed away during this part of my cycle and I still don’t remember periods of that time, complete blackouts. I am still trying to repair relationships with my family. My job has been amazing, my boss incredible. I have intermittent FMLA for this very real thing. Because being at work feeling you feel like you could kick a puppy is certainly a career limiting move.
You say “hey guys, make sure you’re with a girl for a few cycles…” To that I say simply “fuck you, you arrogant misogynistic chauvinistic asshole.” Because we have this disorder men should stay away? We don’t deserve the love other women get? I mentioned I was divorced. I have now been seeing a wonderful man who doesn’t back away when things get tough. I didn’t hide it from him in the beginning. I told him simply that I was going to change in a week and this is why. He has stuck around, for over a year now. Being a father to my kids that their own dad cannot be. He’s seen me at my worst, but will still come and pick me up when I’ve yelled and screamed and ran away. He doesn’t laugh. He reads, he researches, he LISTENS. That level of support is incredible for someone who has been doing this on her own even during my 10 year marriage.
This is a very real thing. Many people compare it as PMS to PMDD like a headache is to a migraine. Each month I feel like my skin, my body, isn’t mine. I have to keep moving, random shakes and shudders to make sure it is mine. My thoughts go wild. I either rage or am insanely clinically depressed. A guy in Subway pissed me off because he couldn’t decide what kind of cheese he wanted on his sandwich. And I don’t mean he annoyed me and I rolled my eyes. I mean genuinely PISSED OFF. Like shaking with rage, and letting it out on him so that he escaped before he even got his sandwich that he had paid for. There are months when I can’t get off the couch. Literally. I can’t move. I can’t think. I can’t focus. I can’t tell you how many things I have missed out on in life.
I know when it is coming. I could tell you the day, almost the hour. It presses a weight down on me that sometimes it’s even hard to breathe. I was diagnosed 5 years ago, am in therapy and see a psychiatrist. I have been on a few different meds, some have worked, some have not. I’m at a good point right now. I have found a combination of meds that work. A diet and vitamin regimen that works. Most of the time. I still get horrible months. And I have great months.
But always, ALWAYS, there is the knowledge that one day this could actually kill me. I have been so low down in the pit, trying to crawl my way out when my fingers were nothing but blood and bones. I know that could easily happen again, and I don’t think I could survive it this time.
There is no cure. One day the meds, or the therapy could not work and I could become one of those 15% that try to commit suicide, a figure that you conveniently glossed over and ignored. I have that knowledge every single day of my life. I have this beast living inside of me, that I try to keep locked up. But sometimes the door splinters and the beast can see some light and it fights like hell to get out. One of these days I am absolutely terrified that the door will break completely.
So again, I wanted to say “thank you”. I’m glad my tortured life and the tortured lives of my sisters could amuse you so much.”          Meghan S.

” I have often said, there is a monster that lives inside and once a month it locks me in the back corner if my brain to hear and see all the havoc it’s causing but there is not a single thing I can do but sit and watch and pray I come out alive. And once the monster slips back into slumber I return to life, doing my best to put all the broken pieces back together, feeling more like a shell and less like a person each time, hoping that I make it through next month too. This is my life, and yet I’m so alone because no one around really understands it.”      -K.S.

” This disorder is a real as any other and it’s sad that the cliché of PMS and other hormone related issues has made a very serious disorder a joke to these doctors. This clip was in poor taste in my opinion. Depression is real, suicide is real, anxiety is real, rage is real. The tears and fear and everything else that can be wrapped in this monster we suffer from. None of that is a laughing matter so why is PMDD?? The female doc was trying but I still think being surrounded by males was effecting her ability to keep it serious.”          – Stephanie C.

” It upset me. Many doctors already don’t take us seriously. For them to keep laughing & make jokes was super lame. We already have our problems to deal with & these so called Drs are rude. Also for the women laughing was like a slap in the face when he was talking about making sure to date them during cycles before you commit to them.”          -Ana T.

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Let’s make this a bit more clear. In the video, Dr. Landry tries to explain the basics of PMDD, using words like sadness, hopelessness, irritability, etc. She says that a woman can have symptoms 7-10 days before her period. That’s all true, but it’s a very diluted, sugar coated version of the truth. Not because any harm was meant from the medical side. But because PMDD has only been recognized as an actual, real condition recently, not much is really known about it. If you ask any woman that actually suffers from it, they will tell you how doctors still have no idea what it’s like.

When they use words like irritability and anger, we are comparing ourselves to She Hulk, and Dr. Jekyll and Mr. Hyde. We use words like extreme rage, seeing red, uncontrollable anger. Another symptom is sensitivity to sound and/or light. Some women get migraines, some(like me) can’t stand anything too loud or repetitive. Which in itself, intensifies that rage. I’ve spoken to women who admit that they know logically how much they love their husband and children, but at this time of the month, they cannot feel that. All they feel is anger and an intense desire to be alone.

Until we don’t feel anything at all. Some of us are unlucky enough to experience anhedonia. Every month. It’s almost like you build up so much anger and you are so overwhelmed by everything around you, that you shut down. That shutting down of emotion, the inability to feel anything anymore, that’s anhedonia.

While they use words like sadness and hopelessness, we use words like severe depression, suicidal ideation, intrusive thoughts, crippling anxiety and in some very unfortunate cases, suicide. If you noticed in the video, Dr. Landry tried mentioning that about 15% of women affected will commit suicide.

Which is how the Gia Allemand Foundation was formed, and if you’d like more info, please click here.

On the physical aspect, all the regular symptoms of PMS are there, and although it’s different with each person, some or all of them can be much worse. I remember breast tenderness as a nuisance years ago, but now tenderness cannot come close to describing the pain every month. Same goes for the headaches, the backaches, the cramps, bloating, stomach issues, insomnia, and the food cravings! Plus there’s the brain fog so bad that you can barely remember your own birthday, and the ringing in your ears.

Oh, and saying that it can last around 7 days is like telling young girls that their periods will last 3-5 days. Yeah it’s possible for it to be 3 days long, but only if you’re lucky. Many of us who suffer from PMDD have found that it may start off around 7-10 days of every month, but it gets worse over time. I’m currently victim to about 14-16 days of every single month, and I am not the rare exception.

“That clip was a pathetic joke. It probably did more damage to efforts being made for PMDD to be recognized as real, rather than any kind of help. If real doctors (And I don’t mean the so called ones in this clip) aren’t always aware of PMDD, let alone know what to do to help, how can this kind of publicity be anything but bad? I know most of the time I try not to think of how much PMDD affects my life but it is inescapable and even trying to explain to friends can be difficult, especially because most women have PMS so assume it’s just like their worst days of that. In fact before I ever heard of PMDD I thought it was normal to have cyclical insomnia and rage, and think of suicide to the point I never mentioned it because isn’t that what PMS is like? Hah! If I hadn’t mentioned to my doctor that I tried to drive my car into a bus and then got my period the next day and felt fine, I never ever would have known and probably would have succeeded in killing myself. I still want to… funnily enough just before my period!
I’m so disgusted in this bloody show and even the women making comments saying oh haha I have that don’t I honey… no you think it’s funny to excuse your PMS and bad behavior. Its sickening. I recently discovered my mother had PMDD, only recently, because she succeeded in killing herself when I was 15 after drugs stopped numbing her pain enough. My older sister also just had a full hysterectomy (and oophorectomy). Now I get to worry for the future and my daughter and hope like hell she dodges this damn bullet because if she doesn’t and this is what people think its ok to say about PMDD, she’s already on a back foot to find true help.”                                  -Maryanne K.

” I know what it’s like to be demonized, and to be expected to act “normal”, expected to control it, and told that an inability to control it isn’t an excuse to rage. I was called a devil more times than anyone can know, and I did not even bring up the worst parts of PMDD to those people. My boss tried to gossip about me over it. And I came literally two minutes away from being dead after trying to kill myself from it. For Dr. Stork to suggest putting us in a psych ward to make sure “nothing else was going on” is ridiculous and shows his ignorance on the diagnosis. If we are diagnosed, we know that nothing else is going on. I am not a psychopath. I have never so much as bruised someone, let alone put my hands on them in anger. Nothing else is going on, Dr. Stork. And the old dude that kept making jokes? Pathetic. And offensive. I did not feel as though I was watching this on YouTube, I felt like this was all being said directly to me. Because idiots who lack empathy have said those cheap jokes to me before. Dr. Landry was also appalling in how weakly she tried to steer the conversation. The laughs over suicide, and road rage, and the skepticism over the entire subject was appalling. It was unprofessional and offensive to an entire group of people with an entire lack of conscience that women die, and suffer every day from those things that were being laughed at. I’ve seen those clowns take some ridiculous things way more seriously, but when they start talking about women killing themselves over hormones, perfect time for a joke, right?”          -C.P.Saxton

In the end, these TV show doctors might end up “apologizing”, which we all know means they are really saying, “We don’t really care but we need to save our asses, so yeah we’ll pretend we’re sorry.” So here’s a message to you.

 

We want a sincere apology. We want you to look deeper into what you’ve done and think about how many women just changed their minds about seeking help because you made their lives an embarrassment. We want you to talk to women who have actually gone through PMDD instead of just making asinine, misogynistic assumptions based off of newspaper headlines. We want you to do some actual research and understand every aspect of your ignorance. Maybe even a redo of that segment where you can show everyone how it should have been done in the first place. With a doctor that is an expert in PMDD, who has compassion and treats women like us regularly. No offense, Dr. Landry, but you didn’t seem to know nearly enough about it for any of them to take you seriously, not like you didn’t try. Maybe if they could have stopped laughing for ten seconds… But most of all, you should all pray that no one you love ever develops PMDD. Even though all of us over here suffering are angry, we wouldn’t wish this on anyone. Even if it would be to teach you a valuable lesson.

Sincerely, all of the women who’s difficult lives have just been made a laughing stock.

 

To any woman who is going through this, you are not alone. You are worth seeking help. You deserve love just like anyone else. This condition does not make you crazy, psychotic, or whatever else someone like these men might call you. Living with this means you are strong, because you fight something that most people can never understand, and you survive it, repeatedly, month after month. Even though many doctors may write you off, dismiss your symptoms or turn you away because of their own lack of knowledge, know that it is worth it to keep pushing forward. Find some support in women who understand, talk to your family and friends, and don’t stop seeking help until you have the tools you need to cope with this condition. You are amazing, you are loved, and you are a warrior.

 

 

If you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741.
Come stand with us at Change.org to demand an apology from the Doctors!

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