Sick? Or Not Sick? That Is the Question.

It’s here again. Not that it’s ever gone, really, but it’s here again and I am baffled. I am sad. I am deflated. I am at peace. I am resigned. I am a mother of a son who is labeled Asperger’s, high-functioning Autistic, Obsessive Compulsive, Pervasive Developmentally Disordered, etc. It’s an elusive thing for sure. My son LOOKS typical, but tonight he is anything but.

Maybe it’s the anxiety I’m holding around some very challenging legal issues.

Maybe it’s because we’ve weaned him off his meds (definitely this one).

Maybe it’s because his other close relatives do not honor or help with his condition (definitely this one too).

I tend to blame myself first for making him this way . . . oh, wait, I do that because that’s what many of my relatives, his teachers, and society have told me. I know that it’s not my fault. How do I know? I know because my younger son is similar to that of the Buddha, and I’m simply not powerful enough to create one of each. So no, it’s not my fault. But whatever the reason through the tantrum, tonight I am feeling as if I can pathologize my son, that is to say that he is “sick.”

Here’s what “sick” looks like tonight and why I am thinking about this so extensively. I was picking the kids up from their father’s house. Someone handed me some playing cards. Michael thought it was not done the “correct” way. Because of his shattered expectation, he screamed, howled, and cried for about twenty minutes. Michael gasped and yelled threats at me. Some sounded like, “I can’t ever use those cards again.” Others were like, “I will burn all the money in your wallet, even if it is one thousand dollars.”

Crying, screaming, and threats because cards were not handed over properly.

How does this come to be?

Then we came home to my house and all was calm after a short while.

Later, after the silence and calm, we talked about what was really bothering him. The truth came out. He was super nervous about going somewhere new next week. He struggled with some things while away from me. It wasn’t the cards at all. It’s never really the cards, is it? It wasn’t the money in my wallet . . . I think we all know there has probably never been one thousand dollars in there. Sigh.

It seemed to be the anxiety he was holding, with no words or tools to get it out, without screaming about an unrelated event.

So I search deep in my brain and heart. I ask my friends. I journal.

I come to this conclusion in this moment . . . post-thoughts after a major tantrum.

I conclude that my son is not sick. I will simply, and complicatedly, say that I believe my son doesn’t have the tools to understand and work with his enormously overwhelming anxiety. I don’t believe he has the brain ability to handle certain situations that other children his age are able to.

I believe that my son is fine and that he needs patience, respect, and love. I believe that he will better be able to handle these “hiccups” as time goes on. I believe that he needs care and nurturing in those moments where he loses access to his higher level of thinking.

I believe I love my son to the depths of my soul . . . and his.

And in this moment, I send this with truth and with love, from me to you.

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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.

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?

Suffering

I suffer while it feels like I watch my child suffer on a daily basis. Life is so much for him and his beautiful different brain. Going to the office supply store today turned into a major incident because of some finger page turner thingy-bobs. I wish the finger page turner thingy-bobs didn’t have so much impact on my son, and in effect, on me. But alas, the finger page turner thingy-bobs do in fact impact my son, and therefore they impact me. And it feels like suffering. And it is simply how we move through life and that is the way it is.

HELP! It Fell Down and We Can’t Get Up!

We have a therapeutic swing hanging in the boyz bedroom (well, usually anyway). It’s totally awesome and the kids love it and it’s been up for probably two years now. When Michael was going to an Occupational Therapist, he requested to be in the “bag swing” the entire session. She had to cajole him to do other things, but they always came back to the “bag swing” (it’s a bag swing like this: http://www.laceandfabric.com/Autistic-Products-Body-Sock-Body-Bag-Silly-Sacks-Swings_c16.htm) time and again. It looks like they are still selling them, awesome.

As you may or may not know, therapy and medications and private schools are all VERY pricey. And so being the genius that I am, I purchased a “bag swing” for my own home. Oh. MY . GOOD. GRACIOUS. GAMMY. GOO. The first night he went into the swing, it felt like he had taken some awesome drug to settle him instantly. It was CraZy. Truly, my mind had difficulty grasping the calm that instantly came over Michael after just a few minutes in the swing. I remember he even noticed it. It was a good thing, that’s what we all knew.

Well, about one week ago as Michael was swinging in the swing, BLAMMO! He falls plum from the sky and lands crashing on the floor with a big, big Thud. He was totally fine and I called the guy who hung the swing the next day and expressed in my calmest desperation “COME TODAY MAN, HE NEEDS TO SWING!”, “When is your first available time to help us re-hang the swing?”

Our handy-man was able to come out the next morning as luck would have it and the swing swung again. The part that failed after two years you ask? The steel rod broke clear in half! When I went to get the replacement part, the guy at the hardware store said he’d never seen anything like it before. We got the ‘high-class’ one this time that was a bit more expensive, but totally worth it. It swung again, until it didn’t. Two nights later. And so, said repair man cursed a bit and came back out. He needs another part, but “it should work for a few more days.” “Thwonk!”, this time it was Mason that fell from the sky, and he fell hard. 😦  Big hip ouchy for him.

It’s been two days and the handy-man has a new plan and a new part, but can’t come out until early next week. I know we’ll make it, but it’s a big honkin’ bummer that the calm inducing swing is out of service until then.

 

 

Sending in love and in the hopes to end the feeling of isolation while living with a different brain, whether yours, your child’s or someone else.