“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?

The Seventh Place

This journey with different brainers really is a fascinating odyssey. One part of the journey is all about where we belong. Or not.

Here’s Michael’s school journey thus far:

1. Charter school for the highly gifted. Got kicked out due to residency issues. Not fined or anything, but asked to leave. WOW.
2. Public school #1 – We went to curriculum night and the end of school “targets” were what he covered the first day of his kindergarten year. We didn’t stay there.
3. Home school. I was going through a divorce and moving and had a different-brained/high-need kid and a two year old. Duh.
4. Public school #2 – One of the best teachers EVER! She was kind and intuitive and it was one of the best years ever.
5. Public school #2, next teacher – Michael screamed and cried every day after school. We got our diagnosis this year. I kept him out of school as much as possible, at least once every eight to ten days. Worst year of all.
6. Brand new school for high-functioning autistic kids or kids on the spectrum who didn’t make it in public schools. Fail. At least for us.
7. Quaker school with two of the most fabulous teachers EVER! I give credit where credit is due, and these teachers were like gifts from humanity to my family. Score.

I just found out this morning that our school will not be able to accommodate sixth grade.

 

 

The Hardest Part for Me

Here is one of the most real, deflating, and crazy-making parts of my journey with my different-brained son. And know our journey started from the VERY beginning; Michael came out with a different brain from day one. I’m sure it is the norm to receive unsolicited parenting advice. I’m guessing every new mom gets strong suggestions on what they are doing wrong, right, and what they will look forward to and on and on the chatting will go. However, this whole thing with a different brainer—well, it just gets hairy and sludgy, even with the best intentioned person.

Michael’s diagnosis includes OCD, sensory integration, Asperger’s (but that’s replaced here with Different Brain), and some slight impulse issues. He takes an SSRI, a commonly used antidepressant, and without that, life plummets. This story is about a trip he takes without me. He goes to visit other people some time ago (vague is intentional) and Michael comes back completely tangled. Tangled means irritable, crying, having outbursts, being unkind, and miserable. It’s a sad state of affairs when he’s tangled inside. L And so we wait. Because the tangle wants to untangle, and it will come out when the time is right. The time became right and what I heard was shocking. It was sad. It felt uneducated. It created a fury in me (the kind a Mama Bear feels when her cub is in danger I imagine). My son was told that he doesn’t have OCD. He was told that he could learn to not have OCD. And he was told that the way I speak to him makes him have OCD. This is the essence of what I remember Michael telling me about this incident. No, I am not kidding. I sure wish that I was because, dear reader, THIS is the hardest part of the different-brained journey in my opinion.

As humans we identify with other people. But our perceived identity can be threatened if people are different. Michael looks like your typical ten-year-old boy . . . kinda. He’s beautiful with his long brown hair falling down to the center of his back. But when he is screaming about not being able to drink a glass of water because someone touched the outside first, people don’t know how to respond. I assure you, you are in relationship with his limbic system at that moment. It’s going to take some tools from our brain toolkit to get him out of his OCD brain stuckness. Good luck is what I tell people. Seriously, it’s gonna take some time and some gentle talking and love. But “teaching” him to drink the water because he doesn’t really have OCD—not so much. After he finished telling me the entire story and he cried and I probably cried, too, here are a few things I made sure he knew:

I told Michael about people and the good intentions they have (mostly).

I told him that it’s perfectly OK to be who he is.

I explained that other people need to be managed, and some simply will never fully understand everything about him.

And I explained how I didn’t agree with how his glass of water incident was handled and I wish it had been different.

I have not always been so calm, cool, and collected with my responses of people who criticize Michael and tell him he needs to learn to behave or be a different way. It’s taken ten years, a second child, one divorce, six schools, three therapists, 100 mg daily, and a whole lotta livin’ to get to where I am today. I trust that Michael will one day be able to kindly, respectfully, and powerfully stand up for himself. Right now, though, I am his mother, and I assure you, I will stand in front of him when needed. I am his advocate, his protector, his champion, and his care giver. ROAR!

Major lesson I see here: We have NO IDEA where people and their children are coming from. We need to turn any judgment we may feel into compassion. Humanity thanks us in advance.

 

 

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

We have a therapeutic swing hanging in the boys’ bedroom (well, usually anyway). It’s totally awesome and the kids love it. 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. 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 fell plumb from the sky and crashed 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 asked in my calmest desperation, “When is your first available time to help us rehang the swing?”

Our handyman 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. Said repair man cursed a bit and came back out. He needed 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 handyman has a new plan and a new part, but he 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 of ending the feeling of isolation while living with a different brain, whether yours, your child’s, or someone else’s.

 

 

A Book of Vengeance

I have written many posts about my “traumas” and “difficulties”, but please know those events are the one’s that stand out as the LOUDEST moments. I share them with zest and desperation. They are not the majority of my time. This is a delightful and joyous story about my kids and the Book of Vengeance. The fascinating part is that this Book of Vengeance was created by my seven-year-old son. He started it because I gave him the standard allotment of screen time on an average day. He wanted more screen time and I said no. So the book was created for me. I wasn’t quite sure how I felt about that. I mean, that was a pretty intense title for something directed at me by a seven-year-old child that I bore from my very own womb. And he created it because he wanted more of something he got plenty of. There it was, though, and that was OK.

He told Michael about it, who is my ten-year-old different-brained son. Off they went planning and creating and making lists, and oh good gracious, I was giggling at the partnership. They were allies and I was the target. HELP! I heard them saying things like “Prank List” and “Mommy” and “sleeping.” I truly had no idea what would happen, but I was pretty sure I wouldn’t get hurt. And so it went that one night Michael and Mason begged me to fall into a deep sleep before them. “Uh, Sweeties, I have to work tonight and I’m not able to do that.” Michael started crying because I derailed his brain-train. We ended up negotiating that I would set a very loud alarm that would wake them up before I got up. That worked because it is a struggle for me to get out of bed, and I could easily promise that I’d stay in bed, in a deep sleep, until they woke me up.

I heard the alarm, and let me tell you, it is difficult to be in a “deep sleep” with loud alarms and kids padding in and out of my room, all the while loudly whispering about what to do next. I heard baby powder, so I figured what was coming. And there it came, a huge blast of baby powder all over my neck and shoulder. Whhooooossshhh.

I kept pretending to sleep. Had I woken, Michael would surely have had a pretty big breakdown and then school would have been a difficulty for him—oh, the things I do for love and sanity. 🙂 I “woke up” a few minutes later with baby powder all over me, and I was like, “What? Why are you looking at me like that?” Those two kids HOWLED with laughter and giggles and sneakiness. I looked in the mirror with dramatic exclamations of, “How could you do this to your poor mother? You sneaky kids!” I put on my blackest of black shirts so I could display the awesome prank they played on me to their teachers. They loved it and so did I. 🙂

Oh, and if you see Michael—you are under obligation to NOT share my secret of actually being awake. Promise me!

Some of the items from the Materials Needed list: Poster board Sharpies Baby powder Tape Nyan cat Paper Markers

A Tidbit of Info

I’m a single mom. The statistics state that couples who have different-brained children are 80 percent more likely to get divorced. I get that statistic; I am one of them. Michael and Mason’s dad is on the every other weekend schedule and we have an overtly flexible schedule. I am sleepily awake on this beautiful morning, and I realize that I miss my children so much. It’s been weeks since they’ve been away from me and the house is quiet. I just got out of bed (it’s almost eleven a.m.), and I miss my two boys. And that brings me joy. Now for a cup of coffee and a quiet book and then whatever life has in store for me after that.

Sending in love with the hope that parents of different-brained children fully GET they are not alone. YOU are not alone.

Dissociation—A Required Tool

My son cried yesterday while I painted a wall in the lobby of his school. The e-n-t-i-r-e time I was painting the front lobby wall, he was negotiating and crying with his teacher and the head of the school. Bless those women. And love for the two others who were with us as well. One was holding the space with love and the other was cheering me on. I’m entering him in rehab (more on that later) and realize I’m the one who has to do the most work (letting go, accepting his independence, etc, etc, puke, etc.). He did have a few moments of calm or peace (quiet at least) during the hour tantrum—working through his stuff time—but would start up again rather quickly. I dissociated somewhere between the painting and crying and hearing encouraging words. I was out. Of my body. Far, far, far away.

I think that dissociation is necessary when the pain and the experience is too much for my wee lil human brain to handle. It is the next morning and I am still not fully in my body. I have been crying—hard—this morning, and so I know I am beginning the reconnection process.

I believe in the power of dissociation because our brains rock. They are goofy, too, but this is one of my favorite “brain tools.” It is this awesome tool to separate from trauma, in my opinion. I have seen how I used dissociation throughout my childhood, and man, I’m so glad I had it. I’ve done oodles of therapy, so when I leave my body and go somewhere perceived as safe, I welcome the protection. I will work to re-enter my own atmosphere today.

I am grateful for this awareness; I know where to start.

Sending love. You are not alone.

Quick Note: My son is ten now and I feel it is time to try to teach the “you can’t always get what you want because you cry” lesson. There’s so much in that particular lesson that includes OCD, divorced parents, blah, excuse, explanation, therapy, sensory . . . Ya know, all the stuff that is in the pot.

 

It Ain’t Easy . . .

Y’all, this life ain’t easy. I was thrust into a flurry of emotions last night and this morning after a hugely difficult afternoon with Michael. Other people were there helping, but I don’t want to “let go” yet. I’m in temper tantrum mode (less loud than Michael’s was) and don’t want to play nice. I’ll stay bundled in the coffee shop and not send any emails . . . until I can own my stuff and communicate from my heart and not my limbic (spell check offered symbolic and climbing) system. So I’ll just post here and let this moment just be.

Send wisdom and love. Thank you.

“Thank You for Not Talking.”

 

It’s the first week of school. There are two teachers, one of which is new. Michael comes home yesterday in a complete emotional and mental tangle. Sigh.

I say, “You seem tangled.”

“Stop talking to me!” he snappily responds.

At this point there is no talking to him; he’s too upset and can’t get a grip. I’ll wait. Very quietly (shhh).

I waited.

He finally blurts out, hours later, something to the effect of, “Mom, when we’re talking and making noise, the new teacher says ‘thank you for not talking!’ when very clearly we ARE talking.” The tears start for him. He’s held this painful disruption to his being all day long.

At this point I’m sad for many reasons:

1. I’m sad that words are so powerful for him that they can wreck his entire day.
2. I’m sad that these verbal “assaults,” if you will, cause him great pain for extended periods of time because he just CAN-NOT-COM-PUTE (in your best robot voice). I’m sad because I don’t know if he ever will compute.
3. I’m sad that I will have to address this in some way. I don’t know her at all, so what’s the best mode? Will she be offended? Do I ask the head of school to address it? I’m sad there are so many options to the whole thing. I know it has to be addressed, though, or my life will get unbearable and that is not OK. There’s another child on the spectrum that Michael said was also upset by her choice of words.

I will wait until tomorrow and then I will make a choice. I will ask him questions tonight and have him swing in his therapy swing for as long as we’re able. This too shall pass, and I’m tired, yo.