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.