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.

Wednesday, February 22, 2017

Save a Seat for Mental Illness

    As a parent, a child's birthday is such a bittersweet time. Celebrating their special day with family and friends is always nice. Yet, there seems to be a part of us that wishes our children could stay a certain age forever. For us however, planning these big days is so much more.

    Typically, planning a big day means finding a venue. Do you have it at home, or at the park, maybe at a place designed for kids? (Of course money is usually a factor here.) Then, it's letting your child pick their theme for plates and all the other fun stuff that goes with their special day. So exciting right?

Not for us.


    I mean, it is, but it isn't. You see, Liam isn't just Autistic. Oh no. Apparently that alone wasn't enough of a challenge. He has many other comorbids, but the hardest is the Bipolar Disorder. This happens to remind us every year around his birthday that it's here, and it's in charge. As he gets older, it seems to become worse.



   His eighth birthday was spent in the Emergency Room, because his new med cocktail included Risperdal. He had severe reactions to it, including Dyskinesia, swelling throat, Parkinson's like tics, abnormal muscle movements and more. Thankfully we caught it quick enough that they were able to administer some counteracting medications and in a few hours we were headed home.

   His ninth birthday was terrible as well. He was in such a deep depressive cycle that he wasn't even really "there." We skipped having a party and took him to his favorite swimming hole for the day. We thought the fresh air, and nature fun would help. It was super hot that day, but all the swimming, fishing and catching critters did nothing to help. It was like celebrating with a zombie. I have two pictures from that birthday, and I can't even look at them. I can see the pain in his face and my heart just aches.

    So while many families work to plan a perfect celebration of their child's birth, our planning process involves so much more. We need to have a plan in place to cancel the event if need be. Which for us, means letting our guests know that the party could be canceled last minute. (This is especially important as a few of his friends and cousin are Autistic too, and we know how last minute isn't great for auties.)

    If he insists on having a celebration any way (which is fine because why let the BP win,) we have to prepare guests for how he may be. That means letting them now he may not speak. He won't smile. Usually hyper and energetic, Liam will be withdrawn and sluggish instead. When you look at him, he won't "look" like he's there. He will open his gifts with definite lackluster, but not because he doesn't appreciate them, but because at the moment, his mind WON'T LET HIM.  It's daunting to say the least, and important that our friends and family prepare their kids.

    Please understand, I'm not writing or sharing this post for attention. I don't want people to think we want sympathy. I promise you, we don't. What we do want is to educate others about mental illness and children. It's real. It's tangible. It's hell. But we not only survive, we thrive. We just do it differently than everyone else. 

Monday, February 6, 2017

To the Untrained Eye, Our Kids Look Like Brats

We’ve all been there. In the middle of a crowded store, or restaurant, and our kid has a meltdown. The stares. The whispers. It’s an awful situation for everyone involved.

If I said I didn’t get angry with those people, I’d be lying. I know that they’re silently judging my child, and our parenting techniques. However, being that we’ve been on this journey awhile, I have come to have a new found patience with these people. (That is as long as they keep their opinions to themselves.) I understand that unless they live with an autistic, or work with one, they probably, in all honesty, think our kids are brats.


This is why as parents, families, teachers, and therapists of these amazing kids, we must do our best to educate. As a matter of fact, Liam presented me with a chance to educate last night. It wasn’t in public though, it was in our own home.

Before I go any further, I am NOT in any way condemning my husband for not recognizing the cues. I spend pretty much ALL of my time with Liam, and I know him like no other. There have been times when I can call a meltdown before he even realizes what’s happening. I’m also not knocking my step son. He isn’t around his brother much as he has a full time job, a girlfriend, and a life. I am merely relaying what happened, in hopes to maybe educate others.

Last night my husband took Liam and his older brother to two Super Bowl parties. Liam was going to stay home with me, but towards the afternoon, he decided he wanted “man time.” I, of course was thrilled because that meant HOURS to myself. I knew however, that more than likely, this would be a disaster later. What are we to do? We can’t keep our children from enjoying life just to save sensory overload or a meltdown later.

I had FIVE entire hours to myself. (Aside from my fur and fin kids.) It was great. When the boys arrived home, I met them at the door. Liam was a bit lethargic and quiet. I asked him if he was okay, and he replied, “yes, just tired.” I ushered him inside, and told him to lay down on the couch.

The other men filed in and within minutes Liam was bouncing off the walls. He was yelling, stimming and laughing, and being obnoxious. Typical of Liam when he is overstimulated. Instead of decompressing, he usually ends up like this, then heads into a chaotic state. I tried to get him to relax and sit, and talk to me about his night. That wasn’t happening.

In the midst of his jumping, stimming and screaming, he decided he needed to wrestle his brother. At this point, his body was wanting MORE input. Knowing what would come next, I advised against this. No one listens to me. EVER. His brother was cracking up and having a blast. One look at Liam’s face and I knew where this was headed. He would soon get pissed and things would get much worse.

Daddy came out. He thought the boys were just playing. So what does he do? He starts boxing with Liam. After a few minutes Liam’s eyes close. Tears are flowing, and he is swinging with all his might. Then he started kicking. I had to yell OVER him to get my husband’s attention. At this time, he knew Liam wasn’t playing, but he was busy blocking off his no no zone, and just kind of staring at him, unsure of what to do.

I told him (hubby) to go away. I glanced at Branden as I put Liam in a hold. Poor kid wasn’t sure what was going on. (I honestly think he thought Liam was being bad and was waiting to see what was going to happen.) I managed to carry Liam to the couch where he would be cushioned if he started flailing again, and asked if he wanted pressure. He screamed in my face. Eyes still closed. So I just backed up and patted his butt, as it has been the quickest way to calm him since he was a baby. I looked at his face and my heart was breaking.

He had black circles around his sunken in eyes from lack of sleep. Tears were flowing. His nose and lips were red, chapped and cracked, and his bottom lip was bleeding. He whispered, “Mama I need some pressure.”

Of course his weighted blanket was drying from just being washed that evening. His body sock was missing as well. I was able to think clear enough to grab his big crocheted blanket, which provides at least half of the weight he needs. I was actually able to get him calmed down in about fifteen minutes.

Then he asked for chocolate shake. (What he has always called chocolate milk.) Guess what? We were out. (We let him run out because he has been using way too much and he refuses to listen to us.) Of all times for us to try and teach him a lesson. I made some sugar and baking cocoa, but he wasn’t having any of that. He took his meds with a little pop, and let me put some coconut oil on his lips. He was fast asleep in another ten minutes. He slept until 11 am. I let him sleep because I knew after all of that, he needed to rest.



Afterwards, I had my husband walk out. In front of Branden I apologized for screaming at him to walk away. I explained that Liam had all of the tell tale PRE meltdown signs. I even went through each one, making sure they both knew I wasn’t patronizing them, but was telling them for the next time. Especially since they can differ from time to time. This was the first time in awhile that Liam had them to this extreme. In recap, Liam went from:
  • lethargy
  • hyperactivity/stimming
  • craving input
  • anger
  • out of control, meltdown mode


My husband said he thought Liam was playing at first, and Branden concurred. When he got out of control both just thought he was mad. I pointed out the blind rage and the fact that he was falling and throwing himself across the room. He wasn’t angry, he was out of control.

Sometimes even family needs to be reminded of what is going on. Which is why so many of us write about it, talk about it, and Facebook it. Yes, we are divulging some personal moments, but we do so in the hopes of helping someone else. For the families that live lives like ours, they don’t feel alone. For those that don’t, if they happen to read this, and learn from it, well then maybe they won’t judge that screaming kid in public.

Thursday, December 1, 2016

Top Ten Tips for Surviving The Holidays Special Needs Style

    Tis the season! Bring on the holidays! The parties, the shopping, the decorating, the traditions, and the STRESS! Add special needs into the mix, and well, it could be a recipe for disaster. I'm no expert, but my autistic and then some son is ten, so through the years, I have learned a few things. Here's my top ten.



Number One: Prepare, prepare, prepare!


     By this I mean, do you best to know what parties you'll be attending at least a week ahead of time. I personally try to get all mine figured out by the first of December. I do this because this way I have plenty of time to prepare my son. We talk about what days we are going where, and what we'll be doing. We talk about whom will most likely be there, and about how long we plan on staying. (That's not to say we don't leave early if need be. That leads me into number two.)

Number Two: Have an Escape Plan


    Now I know what you're thinking, do you REALLY need an "escape plan?" Yes! Yes you do. Parties, people, and tons of smells and loud noises can be overwhelming to neurotypical people, imagine how it is for someone who is sensitive to all of these things? Always have an escape plan, complete with a code word. For example, we have two types.
  1. We have a code word or a signal for Liam that means he needs some space and quiet. When he says this word, or gives us this signal, one of us excuses ourselves from the party, and takes Liam to a quiet room, or outside if possible.
  2. This code word and signal is reserved for "I can't take anymore, and I need to go home." Our families know by now that this sometimes happens, and they know if we suddenly excuse ourselves and start saying goodbyes, then Liam needs to go NOW. 

Number Three: Shop online


    Many of us already do that, but I kid you not, as a special needs mom, online shopping is a life saver! The crowds, the noises, the lights, the smells, it's a lot. Grocery shopping can be hard enough, but Christmas shopping with a special needs kid is sometimes super tough. So don't feel guilty. If you can get it online, do it! If you can order your groceries, have them delivered, or even just go to the store to pick them up, DO IT! I do, and let me tell you, it's a life saver! 


Number Four: Let go of perfection


    The holidays are NEVER perfect. We're not living in a Norman Rockwell painting. All you should strive for is a peaceful and happy holiday. Which brings me to the tree. I have mild OCD. My son has OCD a bit more extreme. We clash when it comes to the tree. I used to dread doing it because all his favorite ornaments were front and center, pretty much on one branch. I'd move them, and the next time i turned around, he moved them back. I gave up. I let him decorate his way, while I mildly coax him to space them out, and I LET IT GO! Decorating the tree has been so much more enjoyable since I learned this lesson. Remember, they won't be young forever, and there will come a day that they won't care about decorating the tree. That's your time to shine! 

Number Five: Always take food


    If you don't already do this, now would be a good time to start. Find a nice separated lunch box, or bento box, and pack it with your child's preferred foods. Or take their favorites as your dish to pass at the party. Don't force them to eat foods they can't handle. Food aversions are so real, and you really don't want your kid vomiting at friends or families homes. 

Number Six: No matter how old your child is, a change of clothes is needed


    When my son hit about four, I stopped taking changes of clothes. He had been potty trained for a few years, and I figured I didn't need them. I was wrong. One Thanksgiving he couldn't get his dress pants unbuttoned. Which led to him peeing himself. I had no clean clothing. This led to my son wearing a pair of his nana's undies, and one of her tee shirts. (Thank goodness she's tiny!) This leads me into Number Seven....


Number Seven: Let them be comfy


    Many of us like to dress up for the holidays. If you're a housewife like me, it may be the few times a year you don NICE clothing, and actually wear make up. But don't force your kids to dress up. Clothing sensitivities are hell, and how much fun will they have in a scratchy sweater, and pants they can't undo? None. They'll have no fun, and most likely neither will you. My solution to this was to design my son an "ugly Christmas sweatshirt." He can't handle sweaters of any kind, but he can do sweatshirts. So I designed him one and he loves it. I also buy him nice black sweat pants. That way he's warm, comfy, and he doesn't look terrible either. 

Number Eight: Let us stim


    This applies to every day, but I'm adding it here because some parents will distract a stim when at a function or party. Don't. As long as your child isn't harming themselves or someone else, let them stim away. It makes us happy. It helps us calm ourselves. It helps us decompress. 

Number Nine: Take fidgets, tablets, phones and more


    Screen time calms us. Let us have it. Also bring fidgets or preferred toys to keep us busy. Maybe include a board game that your kids like to play that he or she can share with cousins or friends kids. Liam always has a bag of stuff that he takes and his top choices are his tablet, iPhone, squeezy fidgets, a few cars, and a game. 


Number Ten: Don't feel bad for saying no


    If your child is having a rough day, and you know that attending a party will not be conducive to him or her, then don't go. Don't feel guilty. Stuff happens. I promise you that we have missed many a party because of this reason. Family and true friends will get it. They may be disappointed, but they will get it. Instead, let your kiddo pick out his or her favorite Christmas movie, grab some snacks and chill. 

 Have a Happy Flappy Christmas


    Do what makes your child happy. Do what works for YOUR family. Do for others as you or your child can tolerate. But most of all, enjoy the holiday with your kids. They're only young once. Make memories that you will forever cherish. Even if they involve staying home in your jammies.

<3 Courtney

Sunday, November 20, 2016

According to Big Lots My Son is the Bad Kind of Crazy

    Tis the season! We are being bombarded with holiday shopping commercials. With Black Friday less than a week away, they are everywhere! I've personally been stuck on the Hallmark Channel and enjoying the sappy Christmas movies. That is until I heard Big Lots new commercial.

I went from happy holiday spirit, to shock, to anger, to sadness. 

Here's the video.... CLICK HERE



    "I went crazy in a good way...."

    ....As opposed to what other kind? Bad????

     I don't sugar coat my son's struggles with mental illness, but I sure as hell don't support furthering the stigma surrounding mental illness.

    Before you stop reading and think, "ugh! People are too sensitive! I'm tired of being so politically correct!" Think of this, CHILDREN suffer from mental illness. Do you think they, or adults, would like to be called "crazy?"

    By saying things like "good crazy," you're in fact adding to the fear and stigmas that surround those affected by mental illness. It's not about PC. It's about being a decent human being. It's about caring. It's about being respectful.

    We all know it's not okay to use the n word. Many of us are working on teaching people not to use the r word too. Well, as a mother of a child with special needs AND mental illness, I implore you not to use crazy as an adjective to describe someone. It's hurtful and demeaning.

    My son saw the video just a bit ago, which sparked the reason for this post. In my ten year old son's words, "I hate when people say crazy! It's not nice. I'm not crazy! I just have problems! Why are people so mean mama?"

    There you have it. From the mouths of babes....

    I'm reaching out to all of you, and to Big Lots too, STOP using "crazy" as an adjective!

For those of you whom like me, agree that crazy is a form of ableism, and actually care to find words to replace it, check out this post from What Privilege.

According to Big Lots My Son is the Bad Kind of Crazy

    Tis the season! We are being bombarded with holiday shopping commercials. With Black Friday less than a week away, they are everywhere! I've personally been stuck on the Hallmark Channel and enjoying the sappy Christmas movies. That is until I heard Big Lots new commercial.

I went from happy holiday spirit, to shock, to anger, to sadness. 

Here's the video....

https://www.facebook.com/biglots/videos/2186529718061587/

    ....As opposed to what other kind? Bad????

     I don't sugar coat my son's struggles with mental illness, but I sure as hell don't support furthering the stigma surrounding mental illness.

    Before you stop reading and think, "ugh! People are too sensitive! I'm tired of being so politically correct!" Think of this, CHILDREN suffer from mental illness. Do you think they, or adults, would like to be called "crazy?"

    By saying things like "good crazy," you're in fact adding to the fear and stigmas that surround those affected by mental illness. It's not about PC. It's about being a decent human being. It's about caring. It's about being respectful.

    We all know it's not okay to use the n word. Many of us are working on teaching people not to use the r word too. Well, as a mother of a child with special needs AND mental illness, I implore you not to use crazy as an adjective to describe someone. It's hurtful and demeaning.

    In my ten year old son's words, "I hate when people say crazy! It's not nice. I'm not crazy! I just have problems!"

    I'm reaching out to all of you, and to Big Lots too, STOP using "crazy" as an adjective!

For those of you whom like me, agree that crazy is a form of ableism, and actually care to find words to replace it, check out this post from What Privilege.

Sunday, October 23, 2016

Being a Not So Special Needs Mother IS My Career

    It was brought to my attention yesterday that recently someone in my family (by blood, not by choice of course,) informed my mother that, "well at least my children have careers to be proud of."

    To say I was immediately infuriated was an understatement. 

    My voice went from normal to "Get the demon out of her!" in a matter of seconds. Seriously, my husband said he was waiting for my head to start spinning on my shoulders.

Wait a frigging minute!


    I'm not knocking anyone for their careers or lack thereof, but in my humble opinion, a career does NOT define us. I don't care if you're the most gifted neurosurgeon on the planet, you can still be an a$$hole, and that isn't something to be proud of.

   Truth is, I used to have a career. I self taught myself to tattoo and worked in not just one, but TWO shops in busy cities. I was in a tv commercial (it was so embarrassing,) and constantly booked. I also made DAMN good money! Then I became pregnant. I was high risk and immediately put on bed rest.

Bye bye career!


    I didn't care. The miracle inside of me was more important than a career. Fast forward a few years. When Liam was just five, and getting ready to start school, I decided I needed to find myself and start tattooing again. The guy took one look at my portfolio and hired me on the spot. Just days before I was to start working, Liam was diagnosed as Autistic.

    With a heavy heart, I contacted the gentleman and declined the job offer. Our world was spinning, much like our little boy. I started veraciously reading every book on Autism that I could get my hands on. I became a Parent to Parent of Pennsylvania Peer Mentor, to support and walk other parents through the diagnosis process. Eventually, I started a blog to educate others who were in the same boat as us.

    That flourished into a Facebook page. From there, a local support group. I organized the first ever autism walk in our town, got our local theaters to host sensory friendly movies, did Christmas parties with sensory santas, decorated the town for Autism, had a party to educate neighbor kids about autism, (our local news station actually came to it and did a story on Liam,) and so much more.

    I've grown into a better writer. I've been featured in Autism Parenting Magazine. I was published on Yahoo Parenting, (which was such an honor.) I have been featured several times on The Mighty, Sandwiches and Psych Meds, BlogHer, and more. Liam and I made the cover of Parenting Special Needs magazine. And Liam did two campaigns with Paper Clouds Apparel, to raise money for Autism charities.

    So no, as this person stated to my mother, I don't have a career per say. But guess what? In five short years I've educated and helped more people than I can even count. More people than she could ever fathom.

You know what, I'm proud of that!


    I'm lucky to be able to stay home and care for my miracle child. To be able to home school him, help him with therapy, be there for other families that walk a similar journey, and juggle a few writing jobs here and there.  I'm also proud that unlike that person, I'm not an a$$hole. I'm also not perfect, nor special, but I try damn hard to help anyone that may need a shoulder to cry on, or an ear to listen.

    I have made some amazing friends thanks to this journey. Friends that I CHOOSE as my family. I don't need people like her in my life, and I don't need a "title" to have a purpose. My purpose is here, and I'm okay with that.