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.

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.