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.