Waiting for the Other Shoe to Drop

    If you or someone you love lives with mental illness, then I'm sure you know this feeling. When a cycle is creeping upon you or your loved one, you know it's coming. Any day, they or you, will spiral into Hell. The signs are there....but there's nothing you or anyone else can do....

My boy on an even keel, spinning, stimming, and smiling. <3

Waiting for the Other Shoe to Drop

    That's what it's like for us. As his parents, we sit back, and we wait. Because we know, that any day it's coming. The deep, dark, depressive cycle. The one that steals the glimmer from his eyes, the smile from his face, and the hope from his heart.

    He powers through the little cycles every month, but in the spring and fall, the big ones come. It never fails. It's always waiting. Lurking. Taking it's time. Ready to pounce. To leech into his life. Each time, stealing a little more innocence from my beloved boy.

The Signs

    I've noticed he's been slowly coming down for the last week. More apt to cry for no apparent reason. Commercials and songs on tv making him shed tears. We're back to muting the tv again. (Especially the damn tiger commercial!) Sleeping ALL.THE.TIME. This child rarely sleeps. But in the past week, we have to make him get up. Literally fight him to get up, and play or do art, or anything other than sleep.

Snuggling with his fur cousin Velvet <3

    Video gaming is usually a reprieve for him. But not now. A simple loss sends him spiraling into sobs. He's head banging again too, and not to our beloved rock music either. I mean, he's getting so upset that he bangs his head for "relief from the thoughts." 

    These little signs are how I know the big one is coming. He does too. He can sense it. He feels it. He asks me, "How bad do you think it will be mama? Do you think it will be over fast? I don't want to lose a month of my life again."

    Thoughts from an ELEVEN year old boy

     A boy that struggles to make sense of life as it because he lives on the autism spectrum. He also fights this demon we call mental illness. More specifically he fights Pediatric Bipolar Disorder. 

    My son really is a superhero. Sans cape of course (except for the days when he dons his Batman one.) But he won't. Not until this cycle subsides. 

    You see, people on the spectrum perseverate. That means they have one thought, repeatedly. Day in and day out. Now add in the horrible thoughts of wanting to die from mental illness. Those fleeting thoughts don't leave. Now they are all he can think of. They play on repeat in his little mind, all day, all night. I can't imagine how that must be for him.

A Plan

    For now we live each day in waiting. Making mental notes of every sign, so we know when to jump into action.

    We have to have a plan. Up until now if he became too suicidal, it would mean a four hour ride in an ambulance to the closet mental unit that takes peds. Now however, he's "old enough" for the local behavioral science unit. I'm not really sure if that should make me feel better. Because my eleven year old boy would be in a ward with adults fighting the same battle. My baby. My world.

Suicide Watch

    Suicide watch is coming. We make sure all scissors or kitchen knives are hidden. He isn't left alone for more than a few moments. And yes, that means even in the bathroom. Because all it takes is a moment. It also means that I will now be sleeping in the living room with him. Someone has to be by his side at all times. No comfy bed. No good night's sleep. Not now. Not for awhile. This is our life. This is autism and mental illness. 

    This life isn't easy. For him, it's even harder. So on a bad day, take a moment and remember it could always be worse. 

    And if you are experiencing suicidal thoughts, please ask for help. I know, it's not always easy. Most often, my son doesn't ask either. But there are people who want to help. You can even message me if you need it ( alegionforliam@gmail.com ). But please, reach out.

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.

   

   

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.

Why I hate functioning labels

    I do. I despise functioning labels. I don't care for labels at all, but as autism parents, we all know these labels get our kiddos the help that they need. The functioning labels are the worst though.

  They are designed to show where our children are on the spectrum, yet they are actually limiting our kids.

    Here's an example of why I hate functioning labels. Liam has been diagnosed by four doctors as being autistic. (as well as Bipolar and MANY other things. He has a full plate.) Two of which said he is high functioning. The other two said he was moderate.

    Why two different functioning labels? Let me tell you. Liam's IQ is 120.  He tests gifted in Math and in Vocabulary. YET, his reading comprehension is bad. He can read to me, but he can't tell me what it was he just read. He is considered learning disabled in that area. Even though he spoke early, his speech was so hard to decipher, it was considered as a speech delay.

    So it would seem that based on his IQ and some of his test scores, he is "high functioning." But, based on his "disabilities" and behaviors, he is considered moderate.

    Liam has also learned to "pass." For those of you not familiar with the term, "passing," it is when an autistic is able to pass as "normal." There are some days where Liam can play with his peers or be in a public setting, and no one would know he is on the spectrum. However before long, "passing" becomes too much work and a meltdown ensues. There are also days where he doesn't even try to pass. It seems that at 8, he has realized that around the people that accept him most, there's no need to pass. So around new people or in public is when he attempts passing.


    So you see, Liam is literally, all over that spectrum. He doesn't fall into one convenient slot. The more parents I speak to on my page, the more I have learned that Liam isn't alone. So why do doctors and therapists insist on using these functioning labels? Even though the DSM V caused an uproar by removing "Aspergers" as a diagnosis, knowing what I know now, I have to agree. I am glad it's gone.

    You know what else I don't like? I don't like when I am speaking with other autism parents and they act like Aspergers makes their child better than mine. Does it matter? It's all technically the Autism Spectrum now. There is  NO Aspergers. So please, don't use that term to one up other autism parents. It hurts!

         Autism isn't a competition.

    I don't care where you or your child fall on the spectrum. My child doesn't care where you or your child fall on the spectrum. People are different. Autism is different. Not one of us is the same, neurotypical or otherwise.

    So in my world, there are no labels. Last year I was told I was on the spectrum. The term she used was HFA. No. I am NOT HFA. I am simply on the spectrum. Where I am on the spectrum depends on the day. My mood. The situation.

   Basically, my autism is my autism. Liam's autism is his autism. And your autism is your autism. No functioning labels, just autism.