Quotable Day

“Speaking one’s mind once is more honorable than quoting a thousand men.” ― Mokokoma Mokhonoana

A thousand men did not say the following, but in fact, maybe they did. I wonder how my life parallels others. I can’t imagine very closely. We clearly were speaking our own minds.

 

Michael ended up with a level nine out of ten freakout this afternoon. Mason and I were picking him up early from school for an appointment. This breakdown was more traumatic than most, and they seem to be getting more intense in the last few weeks. We’re workin’ on it, though.

What I want to share here are a few quotable highlights AFTER the trauma. All of which jolted me to deep thought, ponderance, and a twist of sorrow.

As Mason and I are walking into his appointment, Mason grabs my hand and says, “Maybe I’m a magnet for darkness.” I assure him he is not a magnet for darkness. We open the appointment with his therapist with a quick overview of what has just happened and away they go. Mason was very quiet as he emerged from his play therapy session.

Tonight, as I have emerged from my fear and sorrow and am re-entering my body (after I cried for about an hour, ordered Chinese food I can’t necessarily afford, and vegged out mindlessly while the kids played video games), I say to those kids:

“Listen up, people, we have to figure out how to release these traumas, like the one today. We can’t keep them in our bodies. Let’s use Mason’s idea of writing our ideas down about how to process today’s trauma and our feelings about it. That way we each have our thoughts written down without interruption and each of us will get our voice heard.”

Mason loves the idea and goes first. Speaking out loud is not as easy for him as writing. So he writes something on the paper. Michael takes the paper to go next and then reads Mason’s writing out loud, “Let’s just sacrifice him.” We laugh. The tension breaks. It is a moment of truth and relief for all of us . . . totally ignoring the major hint of tragedy. Or truth. Both.

During this, Michael is speaking in a British accent (Michael talks almost constantly) and says something like, “Mummy, if you were pregnant with me and knew then what you know now about my different brain, I would seriously consider signing up for abortion.”

This isn’t quite going the way that I had hoped, but at least we’re all sitting together talking. We’re opening up the major wound that we had to endure this day, October 30, 2013. Darkness, sacrifice, and abortion are all words my children are speaking. I’m uncomfortable with this, yet it is what is being presented to me.

With humor and tragedy, I share my day with you. Because we’re not alone in this—you are not alone because I am over here talking through my life experiences with my kids. I can’t stop the intensity of these life experiences, but I can try to minimize them, and I can definitely work through them after they happen. And maybe you have to get through these things too.

Sent with love and support,

Mica

 

 

Advertisements

Murder—and I Condone It

Desperate. I know it.

Defeated. Without a doubt.

Wanting it to end. Yes.

These are the deep, dark emotions of having a child who isn’t “typical.”

http://www.cbsnews.com/video/watch/?id=50154011n

The above link will take you to a four minute and thirty second story about a woman who murdered her autistic son. According to the report, she then tried to end her own life. In this moment, I’m not sure how I feel about her living (she lived). Truth be told, I wish her pain could have ended. I wish she wouldn’t have been found. I wish she had been allowed to finish what she started. Her life may now be filled with peace because her son is no longer in pain, but I imagine the pain of what she did and what she will go through now will also be unbearable.

I hold a glimmer of hope that she may become a beacon and a spokesperson for the pain we are all feeling in the situation of raising children who have needs that are just barely met, only sometimes, mostly not though.

I do not know her pain, but the story I saw brought me to my knees with compassion, fury, and helplessness. Her autistic son was in writhing pain and had no way to express it except in a way that required five to six officers to restrain him. This woman’s autistic son seemed like an infant in a grown body—in a system that has no healthy way, YET, to effectively help him. Or her.

See, I don’t have a son who thrashes out and strikes me and is unable to communicate. But I know there are hundreds of thousands that do. I have a son who can verbalize and cry and pace and release his emotions with sounds and words. His words sure do hurt sometimes, but even that can be managed with therapy, medications, and compassion. I have a son who feels safe sharing his pain and this is because I am able to create a safe container for his huge emotions. I have the patience to help him through these times, even when he is giving his rage and anger to me and at me. I know I am not going to get a black eye because my son is in pain.

This woman did not have that safety. She was desperately doing all that she could, from what I saw in this video, to give her son the very best life. For him.

How long does he have to writhe in pain? How long does she have to watch helplessly as the powers-that-be tell her what she has to do? How long does she have to guess and fight for her son’s rights as a human being? And where can she go and what can she do while she fills out paperwork for help that will take hundreds of dollars and twenty-two days to gather. After that, it’s five months to wait for a response that has a 70 percent chance of being declined (not that I know anything about applying for benefits). And the cost—good golly, did she even have money to cover the state law enforcement costs, not to mention the medical bills? Staggering thought.

But in this big wide “People World” (as opposed to the safety for these children in “Video World”) as I refer to it, there is a slathering of judgment, misunderstanding, and violence. Violence from outsiders looking in with words, with mean looks, with unabashed judgment of what’s right and what’s wrong with each other. From where I stand, there really isn’t a whole lot of compassion for us parents of different brainers. I feel judged much of the time even though I know for a fact I did not teach my son to scream and cry when he doesn’t get his shoes on first. I’m not kidding.

This woman watched her son be wrestled down by more than five officers. This woman watched her son be restrained for days on end and had to spoon feed him. This woman slept on the floor, most likely to help soothe his pain if he woke up scared or hurting. And we can only imagine what else she had to deal with while all that was going on. What were her and her son experiencing between the start of the attack and the time it took to call for help and then for “help” to get there? Just think about the daily life this woman led. My head shakes and my heart goes out to support her and all of us in this.

I write my opinion, but what do I want? Dear reader, what do I want after seeing that heart wrenching story?

I want us all to turn our judgment into compassion. I want us to not condemn this woman for trying to end the insurmountable pain she and her son suffered. She’s right, her son deserves better than to be treated like an animal. And if that’s the best we can do as far as outside assistance for her and her son, then a big fat shame on us. And so, in this moment, I condone her choice. My heart breaks that she even had to go that far. This woman, who really seemed to care (because there are others who harm their children intentionally), had to make a choice because the pain was just. too. much. for. her.

There is another side to this, but for the sake of this post and this thought, I want to hold powerfully that I stand with her, holding her hand and giving her strength and even carrying her when she needs it. Yes, that feels really good to help carry her through this time.

So when you read this and are appalled by my support of her choice, try to walk one mile in her moccasins. And then and only then can you offer an opinion. No judgment, just an opinion of your feelings and your experience of witnessing. Just compassion. You don’t know what it’s like. If you do, I’m sure you share my opinion of support on some level.

I know not what I would have done. But I do know that in this moment, I have not one ounce of condemnation for that beautiful, caring mother who could bear the pain not one more moment.

I do want to bitchslap our society to wake up to the humanity and the struggle of our time. I want us all to wake up to each other and see each other for the pain we’re feeling, the hunger, the struggle, the challenge, the beauty of what it is to be human now. We can do better. We can stand as a people against what is hurting us. Yes, we can.

I send this with incredible sorrow, huge compassion, and my understanding for why this happened.

Mica

Smiles Again

For the past three months, I’ve been under more strain than I’ve been in . . . years, or ever maybe. It involves finances and protecting my children. So I’ve been stressed and more “mentally absent” than usual.

Yesterday my neighbor gave me some of her old art and craft supplies. In that was a bag of colored needlework floss, the kind I used to make friendship bracelets with. This morning I showed my oldest son, the one diagnosed with Asperger’s, how to make bracelets. My plan was to show him and then get my computer/finance work done.

Turns out it was difficult for him to do it on his own. He could do it, but two sets of hands were much more effective than one set of hands. I’m soooo proud to announce that I made the difficult decision to sit with my son. It was more difficult than one might imagine to sit and spend time with my child, with all the “stuff” to do . . . ya know. I went and got my coffee and sat with him and held each string as he knotted it around the next twice. I sat while he got fidgety and said, “I won’t let myself talk to my conscience because if I do, then I’ll be able to take a break, and I don’t want to take a break.” I sat with my son and took the most important thirty minutes of my day to be present with him. My other son is an incredible pianist, so while Michael and I were weaving the bracelet, Mason was creating a piano piece depicting a three-series Pokemon battle. His music soothes my soul for sure.

I’m smiling right now feeling great about my decision. I’m smiling right now thinking about how even after three months of worry, thirty minutes can shift my state of being. I’m smiling right now because my son has moved on to another type of weaving and is almost done with his next project. I’m smiling right now and it feels like it’s been way too long since I’ve smiled like this.

Yeah.

 

“This Life Is Chronic.”

“This life is chronic.” That’s what the lady said to me during a class I was taking. She had been a counselor and worked with different-brained children in her previous life and someone introduced us, of course. As we’re talking she says, “This life is chronic.” She didn’t say it twice; I’m just repeating the first sentence again. I didn’t know the actual definition of chronic in that moment, but it sure didn’t sound good to me. I smiled, because I had just met her and didn’t want to interrupt the flow of the conversation by asking what “chronic” meant, and we carried on. I don’t remember much of the conversation, except for that one sentence.

So I looked up the definition online at dictionary.com. Here’s what it says:

chron·ic – adjective

1.constant; habitual; inveterate: a chronic liar.

2.continuing a long time or recurring frequently: a chronic state of civil war.

3.having long had a disease, habit, weakness, or the like: a chronic invalid.

4.(of a disease) having long duration (opposed to acute).

Well, that’s not what I want. I want to walk into a doctor’s office and get this fixed. I sure don’t want to deal with moments like tonight all the time. I don’t want my other son to have to deal with moments like tonight. I don’t want my boyfriend and his daughter to have to deal with moments like tonight. And yet, moments like tonight happen on nights like tonight. Nights that start out beautiful and joyful. I remember the laughter and running around, a little bit.

I will not share about tonight, tonight. I am tired and I would curse a lot and I’m finding that people don’t love curse words. I do, but others don’t, and I still need to curse. It involved three beautiful children and a game named “Tag.” My different-brained son doesn’t play tag, so then why was he in the game? Alert! It went downhill very fast. Several hours later I am here writing this blog post because I need to share. Thank you.

Right now, before I go to bed, I am in need of space and quiet and solitude. I don’t know how long I’ll stay awake. I’m very tired. And I want to sleep, but for my own sanity and mental health, I need to “sit and stare” for a bit longer.

“This life is chronic,” a blogger said to you one night.

Support and Looking Back

I have been on this different-brained journey for Michael’s entire life. He came out with a very clear expectation of how life was going to be. And with that expectation, he was given the gift of communication when things did not go the way he thought it should. That communication includes loud screaming and crying and threats.

I started journaling several years ago to attempt to keep my sanity and create a healthy habit for myself. I also work really hard at maintaining beneficial support systems in my life. Following is an email that I wrote in July 2011, although it seems more likely it was sent in 2010—but my ability for geography and chronologaly (yes, I just made up that awesome word!) is almost nonexistent.

My Asperger’s son who is now eight has had “episodes” of epic proportion as of late. I now have emergency psychiatric hospitals and clinics ready to program into my cell phone. My son, Michael, has threatened suicide over a math problem in the last few months (he was seven at the time). He has screamed at me to “kill him on purpose” because his brother was promised a Frosty from Wendy’s. He threatened to burn down our house. He locked me out of the house a few weeks ago because his brother got to the front door first. He’s eight now.

He has a severe case of whatever-this-is (currently labeled Asperger’s syndrome—form of autism) and it takes over when he can’t make sense of life and feels out of control and completely confused . . . and then it blows out like a candle. It is terrifying, devastating, loud, confusing, and deflating.

He will be getting a psychiatric evaluation as these episodes are escalating in severity of threats. He has not tried to harm himself or burn anything and I really don’t think he wants to . . . I live in constant fear of what will happen next. I have questions that seem to have no answers. I have a son that could potentially be hospitalized (tears) due to his mental condition for safety reasons. How? Why? What to do? What not to do? Rhetorical questions?

When he was one year old, if I didn’t put his shoes on in the order he wanted them on (sock L, sock R, shoe L, shoe R), it would take about fifteen minutes to calm him down from the crying and screaming. I didn’t have another child to compare this behavior to, so it seemed normal, and when describing it, people said hundreds of different things.

The above episode’ are what it looks like at eight years old. I am currently living in fear of what it will look like at ten and twelve. He’s got tools he’s being exposed to in social groups, individual counseling, and occupational therapy. He doesn’t seem to be able to put them into practice as of yet. I honestly don’t know if he’ll ever be able to. What do I honestly know anyway? Hmmm?

I feel that all will be well for moments at a time. Other times I feel overwhelmed with the unknown of where I’m headed. I am softly smiling thinking of all of you, who I feel will hold me while I’m on my journey to the unknown with my son. He’s such an incredible gift and at times I have felt like he’s a living prophet. He’s truly amazing and now I am witnessing an emerging part of him that terrifies me.

 

I received truly enormous support back. As I reread that, it says “I am currently living in fear of what it will look like at ten and twelve.” Well, he’s ten now and I’d love to share what it looks like. He is on a wonderful medication that has calmed his tantrums to an incredible minimum. He has been in therapy for so many years and his “toolkit” for social skills and life skills is chock full of awesome tools that we all use. He totally struggles and he still gets in and out of the car first. If he doesn’t get in and out first, there is a loud, threatening breakdown. But the breakdown doesn’t last as long, and he can sometimes talk his way through them with minimal support. He still hangs on me when he needs grounding, and I am happy to be that for him (a safe coat rack?). So I want to share my celebration of how his maturity and medication and therapeutic practices has created a young ten-year-old boy who is capable of being in loving relationships and can go to school everyday with minimal calls from the teacher.

Know that my life is pretty much devoted to his well-being and the tools I can offer him. We currently have an in-home therapist that is making helpful changes to our way of life and how we relate as a family (me, Michael, who’s ten, and Mason, who’s seven). It’s a work in progress. And I’m thrilled to say that I don’t have emergency psych ward phone numbers in my cell phone anymore. I may still need them, but for right now, I’m not basking in fear. And that is a huge celebration.

“Heaven’s Very Special Child”—A Poem

Someone dear to me gave me this poem. I had tears in my eyes before I got to the end. I wanted to share. I offer this with full respect to all belief systems.

Heaven’s Very Special Child

A meeting was held quite far from earth,

“It’s time again for another birth.”

Said the angels to the Lord above,

“This special child will need much love.”

 

“Their progress may be very slow,

Accomplishments they may not show.

And they’ll require extra care

From the folks they meet down there.”

 

“They may not run or laugh or play,

Their thoughts may seem quite far away.

In many ways they won’t adapt,

And they’ll be known as ‘Handicapped’.”

 

“So let’s be careful where they’re sent.

We want their lives to be content.

Please, Lord, find the parents who

Will do a special job for you.”

 

“They will not realize right away

The leading role they are asked to play.

But with this child sent from above

Comes stronger faith and richer love.”

 

“And soon they’ll know the privilege given

In caring for their special gift from Heaven.

Their precious charge, so meek and mild,

Is heaven’s very special child.”

 

Author Unknown

 

To all of you who are given a child who moves differently from you and others, thank you if you work hard to accept and love and create a healthy space for them and you. If you do not create a safe and healthy space for them and you, please reach out to others and get help.

Opening My Eyes Now

Well, I have to find a school for Michael so he can attend sixth grade next year. Homeschooling is out of the question. We’ve tried it. It didn’t work. I don’t want to do it anyway. I thoroughly enjoy my work and having coffee with friends. 🙂

I found out last week that I’d have to find a school for him. We didn’t know whether his current school would choose to have a 6th grade or not . . . until now. They have made a decision with many sound reasons and I fully agree with the choice for his school to not offer a sixth grade class.

That leaves me in a bit of a pickle though. This past weekend I refused to think about it. When I did think about it, my eyes got all misty and sting-y, so I’d stop thinking about it. Today is Tuesday, and I am starting to think about the possibilities and my eyes aren’t even sting-y. 🙂 Progress. Forward progress and that is a great thing. Next Monday, I will start making phone calls and I will schedule open house visits. For now though, I have eyes at half-mast. I will wait for myself to continue to adjust to the newest task at hand. A task I have done, what feels like, way too many times for a beautiful ten-year-old boy.

School number seven, wherefore art thou?