Monday, October 16, 2017

Why Some of Us Can't Say "Me Too"

    Unless you're living under a rock, you're becoming aware of the "Me Too" campaign started by Alyssa Milano, and in regards to that pig Harvey Weinstein.

    Just in case you're too busy, or just not on social media, to sum it up, women everywhere are tweeting or posting #MeToo if they have been a victim of sexual assault. (You are then supposed to copy and paste the following quote, so others can follow suit. "If all the women who have been sexually harassed or assaulted wrote "Me too" as a status, we might give people a sense of the magnitude of the problem."

But not all us can say "Me Too"

     I can....    but I can't. I can't because for me, reliving that experience is too painful. I have yet to post #MeToo on ANY of my social media, for fear that it would spark conversations with others regarding that time in my life.

I DON'T WANT TO TALK ABOUT IT


I DON'T WANT TO THINK ABOUT IT


It may not be healthy, but I just can't. There is so much going on in my life right now, that I can't let myself feel something that I have worked so hard to push away. I am now a mother with a child that needs me. His emotional well being is often on the brink of disaster and the last thing he needs is a mother in a dark place. 

    I've buried those memories, and that's where I want to keep them. (And yes, I had therapy for it as a teen. My parents insisted.) But this works for me, and that's okay too.

   Even writing this is hard for me. It's dredging up those memories, but in doing so, I hope I'm helping other women, whom feel the same as I do. However, that doesn't mean I want to talk about it. I don't. I have also been avoiding other #MeToo posts because I just can't handle feeling others' pain. And sadly more of my women friends than not, are #MeToo women. 


If you are a #MeToo woman, and it's too painful for you to relive, I feel you. I want you to know that it's okay. 

    My hope is that by writing this, women like me will silently nod, and know it's okay not to tell your truth.  (We're thankful that other women are speaking out. Especially for those of us that can't.)

    In that respect, I urge other readers, that if they see this shared, don't question the woman whom has shared it. 

    It just may be that she can't talk about it either. And she shouldn't have to unless she chooses too.

So.... #MeToo.... 



Monday, September 11, 2017

Snappy Self Care for Special Needs Parents

     I just had a REAL bath for the first time this week! It was glorious! I feel so clean, so refreshed.

     I know you're wondering why today was the first time all week that I've taken a bath. Well, simply put, my child has been in crisis mode since Monday. Suicide watch takes all of your time. 

    If you're a parent, you know that sometimes bathing or other self care gets put on the back burner. When you're a special needs parent, it often gets pushed further back. If you don't get respite, or you have to be with your child 24/7, taking a bath isn't feasible.

    So while I was laying there, actually soaking away a weeks worth of worries and scum, it dawned on me that I should share with you, my tips for self care when you have no time. These are seriously things that when my child is in crisis mode, I can't live without.

1.) Dry Shampoo

    When I first heard of dry shampoo I couldn't understand why anyone would need it. Then I realized, how many times I haven't been able to take fifteen minutes away from my child to wash my hair. In the event that you have to leave the house for a therapy appointment, or worse yet, an emergency room visit, you don't want greasy, nasty hair. At that moment, you feel horrible enough. You don't need another thing to weigh you down. So grab some dry shampoo. Trust me. It works and in a pinch, you'll just feel better.


2.) Baby Wipes

     I think from the time we have babies, baby wipes should always remain in our homes. They're good for so many things. These made my list because let's face it, if you don't have time to wash your hair, then you don't have time to shower or bathe. Break out the baby wipes. In a matter of minutes you can wash down your body, which will help you to feel better. Also, you don't want to stink if you have to leave the house.

3.) Facial Wipes

    When you're worn out and your face is feeling and looking greasy, you want to clean it. You don't have time to fuss around with facial products. However, if you have cleansing or toning facial wipes on hand, you can quickly clean away that dirt and oil. (Hey, it might keep you from breaking out from the stress too!)


4.) Mini Toothbrushes

    Okay, so I really don't know what these are actually called. They're tiny toothbrushes with toothpaste in them. You can find them at the Dollar Tree, and there's actually a bunch of different brands. All I know is when I can't leave my child's side, and my mouth tastes like butt, and my teeth feel gross, these things are a Godsend. Keep them on hand, you'll thank me for it.


    FOUR things. That's it! 


    These four things are my personal arsenal for when my son is in crisis mode. (Side note, COFFEE! I mean, I'm never without that, so I didn't feel the need to add it.) If your life is similar to ours, then stock up on these items. Self care is important, but we don't always have time for it. These save time, and will make you physically feel better.


Friday, September 8, 2017

Mental Illness Affects Our Youth and They Need Our Help

    I have fecking had it with the mental health system in the United States. I know I know, I should be grateful we live here, but at the moment, I'm not.

    I'm not because absolutely no value is put into the mental health system or into our children's, or our lives.

    You finally find a place that accepts new patients, and doesn't just push drugs, you think you have it made. When you choose said place, part of your choice was made because they have "Emergency" Protocols set into place.

    You know that taking your child to the ER for mental health help is useless. They make you sit there all day, only to tell you you can A) take the child home, or B) send them to a state hospital hours from your home.

    So you think, "Wow! This place has emergency hours. Thank the LORT! Next time my child spirals into suicidal behavior, we'll have help!!"

..................................................................................... But guess what????

    That time comes, and nothing. You call them and explain your child is contemplating suicide, just to get a reprieve from his brain. Only to play phone tag for two days. Your child even takes it upon himself to call for help, and guess what???? He gets an appointment for ONE MONTH from now.

ONE FECKING MONTH!

    Call me ignorant, but isn't the definition of an emergency "a SERIOUS, UNEXPECTED, and DANGEROUS SITUATION REQUIRING IMMEDIATE ATTENTION??"

    Is a month from now immediate??

    Feck no it isn't! A lot of things could happen in a month!



    I used to work in a pediatric clinic. We too boasted that we had emergency appointments. And guess what? We ACTUALLY fecking had them! I left two slots open EVERY day in case of an emergency, so we could juggle people if we had too. Some days I had to fill them, but we ALWAYS made room. Even if that meant working after hours. Sometimes that meant working off the clock with NO PAY. But guess what? We were helping children and their families, so it was worth it.

    Is the world so money hungry that they have to book doctors full? And God forbid you may have to stay late to help someone. Especially a damn child.

    You know what you're showing him? That you don't give a damn. If his problems don't fit into your schedule then they aren't important. Way to make a child jaded at a young age.

    If we don't start stepping up, and speaking out about the mental health crisis facing the United States, we're going to lose our children. 

    You see, mental health affects them too. Many people don't realize that. Children can become suicidal. My son started at the young age of FIVE. Yes, at five years old. 

    Most physicians don't know how to handle a mentally ill child. They don't know what to do when you walk in and say, "My child needs help. He/She wants to kill themselves." And it seems that the ones that do are so fecking booked, that there's no time to fit your child in, in a time of crisis.

    What are we to do for our children? How can we help them if there's no help to be found?

Sunday, July 23, 2017

#HELP The Word We Need to Know is Okay to Say

You guys! I was finally starting to pull out of my funk, and give this page more attention.... and then I heard about Chester Bennington.'s death.

I was sitting in the office of my son's mental health psychiatrist when I read it. Tears immediately filled my eyes.

When we got out to the car, I told Beans I had something sad to tell him. I started to play Crawling, ("his song" more on that later) and told him that Chester had died. I even told him how police reported he died.

Because #mentalhealth needs to be spoken about.

He put his little head down, and said, "my gosh mama. that's awful!" he was silent for awhile.

Here's the thing. Did I know Chester? No (but man do I wish I did.) I didn't even get to see him live. But I bought Linkin Park's first album the day it went on sale, and I was hooked.

Something about Chester spoke to me. The way he sang, the words he screamed. It was like someone could finally see their way through my muddled mind.

My son has been listening to them since he was just a little baby. When he was old enough to articulate some feelings, he shocked me.

We were in the car (probably going to some therapy appointment) and Crawling was playing from my iPod (remember the colorful gen 2's? sorry #adhd )

He said, "mama, this is my bad thoughts song. It's like my brain."

Right there I knew the #mentalillness monster was in my son.

Right then, before the actual #bipolardisorder diagnosis, I knew it wasn't just #autism.

I digress. Bear with me, there is a point here.

So anyway, I'm in a major funk again. Every time I see Chester's face in my feed, my heart enters my throat. I am gobsmacked, and heart broken.

To know that that man, with the gorgeous wife, six precious kids, an amazing musical career, and more, felt he had no other choice....

He felt so alone....

so broken....

that he felt taking his own life was the only way to truly be free....

it's horrific....

and I don't want anyone, ever to feel that way.

So here's my point.

If YOU ever feel that way, PLEASE message my page.

(I know my friends are thinking "SHE NEVER ANSWERS MY MESSAGES! Guys! I love you! I promise! I'm just super busy.)

Message me ONE WORD.

One four letter word.

Message me HELP

And as soon as I see it, I will be there, will bells on.

I don't do phone calls because of anxiety, but I will chat with you, and I will put you in touch with someone in YOUR AREA to help you.

I promise.

Because at the end of the day, it doesn't matter how famous we are.

It doesn't matter how much money we have (which is good because I have NONE)

It doesn't matter what kind of car we drive.

What matters is the mark we leave on the world.

The people we help.

The love we share.

Mental illness doesn't discriminate either.

None of those things matter to that monster.

So if I can only do one thing in my life, as long as it's helping someone in need, then I am fulfilled.



So please, HELP is all you need to say.

as a matter of fact, let's hashtag it. Because it seems all the "important" words are hashtagged.

#HELP if you need it, I will be there.

If you feel like you could join this movement, then by all means, comment, share, or what ever. Just look out for one another, okay?

Just #Help each other



Friday, July 21, 2017

Let's Talk About Impulse Control and Autism

Impulse control has always been an issue with my little man. Now that he's getting older, it's getting even harder to help him restrain himself from acting out on impulse. This causes many issues. Let's discuss some of these issues, then we will move on to more about Impulse Control, and some ways we as parents and relatives can try and help our children.


People see this as bad behavior.

    While I really don't care what people think of me, I do care what they think of my children. To the untrained eye, my autie acting out impulsively looks a lot look he's misbehaving. In all actuality, he just can't help himself.


Other people think that reprimanding my child is helping.

    Family, friends, even strangers whom think they are helping will often times try correcting the child. Don't. All you're going to do is cause more guilt for the child. Preaching to the child about what they've just done is only adding more guilt to something they had no control over in the first place. If you want to help, try redirecting the child, or distracting the child. (Ie: Susie grabbed the kitten even though she was asked not to. Don't yell at her. Don't preach to her. Simply tell her the kitten is off limits, and then gravitate her attention towards something else.)

Think before speaking

    This is especially an issue in our home. Our eldest son has moved back home for a bit, and he rarely thinks before he speaks. (Much like Liam, lol.) For example, Liam will be getting on his nerves and he'll say, "go ahead, hit me if it makes you feel better." He's saying it in jest, trying to make light of a tense situation. However, all Liam hears is, "go ahead, hit me." He doesn't pick up on the social cues. He doesn't get the joke. Now Liam is swinging like a pro baseball player at his brother. Brother is angry, and Liam is upset because in his mind, he's doing what he was told. Now his brother, and often times his dad are yelling, because to them, Liam is acting out. It becomes monotonous having to break up conflicts like this. Conflicts that can be avoided if people just took more time to understand Autism and impulse controls. (I'm not saying my husband and son don't understand. They do. Hubby is always trying to keep the peace, and our eldest is out of practice as he's never lived here full time, so he's not completely up to par on our Autism world.)


Now that we've discussed some problems that arise from Impulse Control, let's talk about what it is. 

Impulse Control is the failure to resist an urge or temptation. Simply put, it's a thought that comes into one's mind, and the person then acts on it. There are five stages to impulse control. They are: 


Knowing the stages, what are some ways to help children learn from it, or even to help diminish the impulses?

Don't just focus on what the person did wrong, but also on what they should have done.

    So your child acted on impulse. Depending on what it was they acted on, you may or may not yell. It's okay, because NONE of us are perfect. That being said, try to remain calm. It's okay to tell the child what they did wrong, but make sure you also let them know what they should have done. Try to keep their attention. You don't have to force eye contact (trust me, they will zone out on you if you do,) but ask them questions to see if they understood what you said to them.

Work on listening skills

    This is HUGE in my home. If you are giving your child numerous instructions, they are only going to hear part of it, and start acting out that part. For example, if Liam has to clean his room, I have to say, "Pick up all your dirty clothes, then come back." After he does that, I will move on to the next directive. If you tell your child or the individual a few things at once, you are bogging down their brain. BREAK IT DOWN. I promise you, this works. I have been doing this for Liam for years, and he works so well when others do the same for him.

Repeat back

    Another great hint is to have the person repeat back what you asked them. That way you know they know what to do. This works great for when you want to expand on their directives. I do this when I give Liam two instructions. It helps him process more.

Practice waiting

   Yes, practice waiting. Waiting is especially hard for those on the spectrum. My son and I both hate to wait. (We're working on it.) A good way to practice is to use visuals. Find a symbol for wait, and then a reward symbol. Start out slow. Have them wait five minutes, or even two, quietly. Then they get the reward. (Whether it be stickers, screen time, whatever works.) Over time, you can expand the time. 

Make it a game

    Believe it or not, many childhood games are great ways to practice impulse control and waiting. Simon Says is perfect because the child has to wait on instructions from Simon, and is only supposed to do what Simon says. Follow the Leader, Red Light Green Light, and Duck Duck Goose, are all great games to practice impulse control.

Get the wiggles out

    Give them sensory input. A lot of sensory seekers lack impulse control because their bodies are always on the go. Giving these children appropriate sensory input will help keep their bodies in check, and may reduce some impulses. 

Work on emotions

    Teaching our children emotions helps as well. For example, acknowledging that some things cause anger is okay, but acting on that anger physically isn't. Talk about way to address that anger. Liam's BSC and us, are actively working on this with Liam as well. When he gets angry, all impulse control fails. Frustration is another one. Thinking of ways to help your child deal with frustration and giving them tools to use will help decrease frustration induced IC. 


In conclusion

    These are just some of the things that we are actively doing to help Liam control his impulses. What are some ways that have worked for you?




Tuesday, April 18, 2017

The System is Failing Our Children

How is it that the systems put in place to help or protect our children are actually failing them? 

    We live in Pennsylvania. Liam was diagnosed on the spectrum six years ago. (In the years following, many diagnoses would follow.) At that time, our state case worker suggested we file for SSDI. We have filed, been denied, appealed, been denied, on and off for those six years.

    This year when we went into our caseworker to review his benefits we were told to file again. We called the SSI office and asked for paperwork. In the meantime, I get this letter in the mail.




   Okay, so first of all, what in the heck is the DAP and why in God's name have I just now been informed of it? We've been battling the state for Liam's rights for SIX years. All this time the Disability Advocacy Program of Pa never once stepped in. Not once.

    Suddenly, here they are, telling me if I DON'T file for him that I AM IN VIOLATION. What about them? As you can see, they clearly state that "Liam is considered a person with Disabilities." Yet, year after year, case after case, this very state denies him.

    Now let that sink in.

    I would be in violation for not filing, but they aren't for denying? How does that work? So last night, I spent a couple more hours filling out the same forms, and booklets that I have done in the past. All for them to tell me he isn't "disabled enough."

    Okay. Then why can't he attend a traditional school? Why are you, the state of Pa, helping to pay for me to not work, in order to care for, and to school him myself? Why does his school have him in numerous therapies for Speech, OT, and PT. How can you deny the fact that NUMEROUS doctors have diagnosed him with so many conditions, three of which automatically qualify him for SSDI?

    Why is it that systems put in place to help our children, aren't. (Remember, we've been filing for six years, and just NOW we're being told there's an agency that helps with that.) Yet, the only help they have given is to tell me I could be in violation. Gee, thanks Pennsylvania!

    Our children fight so hard to find their place in this world. They fight to over come their obstacles, and to face their challenges. As parents, we help them with these battles. We also try our very best to make sure all of their needs are met. Yet, the systems put in place to help them, don't. Instead they fail them, and us as well.

   

   

Tuesday, March 21, 2017

We Don’t Walk on Sunshine We Walk on Eggshells

Let me preface this with a disclaimer.


Neither I, nor my son, his father, or any of our family are looking for pity. What we are looking for is to educate the masses that mental illness DOES affect children. It also affects their families.




Tomorrow is the Vernal Equinox. (By the time this posts, it will be passed the VE.) We’re already experiencing longer days. That alone throws many of us for a loop. Especially Autism families. For families like ours, it’s something more.

If you’ve followed us for any amount of time, you know that my son is Autistic. He also lives with Pediatric Bipolar Disorder. I’ve spoken written many times about his major depressive cycles. As a matter of fact, the big one is right around the corner. That’s what Spring brings to our family each year.

However, I don’t believe I’ve ever written about his manic cycles. At least not in depth, nor on this blog. Which brings me to why I’m sitting here writing tonight. At the moment, my son is quietly playing with his action figures. This is the longest I have seen him sit still in days.

If you’re familiar with Autism, you know many Autistics don’t tend to sit still for long. They stim too. My son does both, but when he’s in a Manic cycle, they’re more extreme. I used to tell people that while I loathe Bipolar Disorder, I would take a Manic Cycle over a depressive one any day of the week. That changed this weekend.

Until just yesterday, I have never noticed what an extreme Manic episode was. You see, when my son (and many others) are in (what I thought to be a) manic cycle, they’re uber happy. They tend to talk non-stop, whether it makes sense or not. They ramble on, going from one topic to the next, and rarely stop for air. (I’m not exaggerating.) When you add Autism into the mix, stimming is virtually non-stop as well. My son doesn’t sit still at all when he’s manic (hypomanic.) Sleep is nil. It lasts for a few days or so. Many would look at my son during this time and think of Autism and ADHD.  So as you can see, this would be preferable to watching your loved one so depressed that they can’t function. As I recently learned, this in fact tends to be more of a hypomanic cycle.

Until yesterday I have only ever seen my son in a hypomanic cycle. I had yet to witness full blown mania. Without going into specifics and embarrassing my son, let me explain it in a way that I can still protect his privacy.



My son went from the above “symptoms,” to a grandiose version of them. Then suddenly, he snapped. Something so little, so trivial, sent him over the edge. I’ve seen my son have so many meltdowns, that they really don’t even phase me anymore, but this, this was different. Writing this right now is making me sick, but this, this was terrifying.

I don’t think I’ll ever forget the look in his eyes. His face read rage, fear, and utter lack of any idea of what was happening. Liam’s father wasn’t here. It was just him, my older (step) son, and myself.

This outburst (for lack of a better term) was directed at his brother. I was reprimanding Liam for something, and he saw his brother smile. That was it. That was all it took. He was on him like a feral dog on his first meal in weeks. Before my mind could fully process what was happening, I jumped up and yanked him off his brother, put him on the floor, and applied some of my weight for pressure.

He was screaming, but in just a few moments I saw MY SON come back to me. (You see, THAT wasn’t my son.) His body hitched with tears and I let him up. He ran into the kitchen and hid in a corner.

It took a bit for me to calm him down. I did what I always do after he has a meltdown. I let him tell me what he needs. (Which happened to be some squeezing and singing.) He kept repeating that it wasn’t his fault. That WE are bad and made him angry. That isn’t my boy. My boy always owns up to his actions. He always tells on himself if he does something naughty. But last night…. last night he blamed us. After that, he went straight into self loathing.


He kept repeating that he was “bad,” and “no good.” When he was more calm, I offered him a drink, “I can’t have a drink because I don’t deserve to drink.” My heart was breaking. I kept reassuring him that he wasn’t any of those things. My older son just sat on the couch, completely dumbfounded and shocked at what happened in a split second.

We both talked to him about it. We told Liam that we understand HE wasn’t in control. That he wasn’t in trouble, BUT that he HAD to try his very best to be in control. He went back to being hyper, stimmy, and talking.

A few hours later it happened again. This time because they were having a Nerf war, and his brother hit him with a dart. Within thirty minutes the whole situation was better. My husband came home. The only way he knew something horrible has happened was the looks on mine and our older son’s face. Liam was just playing and being Liam.



When Liam left the room I cried. I bawled and tried to explain what happened to my husband. Snot and tears were flying. I’ve rarely seen a clueless and helpless look on his face, but last night, that’s all he wore. Today we all have walked on eggshells. For fear of another manic outburst, or him delving to the bottom of a depressive cycle.


I know many may read this and think, “you’re the parents, you’re in control, not him!” The truth is, NONE of us are. Right now, Bipolar Disorder is in control.

So, tomorrow morning we’re putting in a crisis call to his doctor. We need to make a plan. We need to find new ways to help our son, because he, and us, do NOT deserve to live like this.

Edited to add: As of today he is doing much better. An appointment has been made with an emergency plan if need be.