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.

 

 

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.

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

Welcome to Crazy Making

I’m guessing that every one of us had a moment where we thought we were going to lose it with this “thing” we had going on. I’m guessing we all went down the “I must be crazy path” because nobody else seemed to experience or understand the thing we were going through. My “thing” was my child, who simply wasn’t like the others or anything else, for that matter, ever discussed, acknowledged, or heard of. My moment involved a cup of milk, a half-inch movement, screaming, and a pediatrician.

Things were “different,” let’s say, in my home. My one-year-old understood way too much for my comfort and everyone that ever met him affirmed that. My one-year-old knew that his socks and shoes were to go on a specific way (left sock, right sock, left shoe, right shoe, period) and not any other way would do. I would know without a doubt I had done it wrong, yet again. How did I know I had done it wrong? He would tell me that it wasn’t to be that way with loud screaming and crying. Very, very loud screaming and crying. And this screaming thing would go on for an indefinite amount of time, just depending on the, oh I don’t know, the way the tea bags were situated in the cabinet. I’m looking for a total obscurity because there never seemed to be a rhyme or a reason or a rattle or a roll that determined the outcome of how my child would react on any given day to any given experience.

One evening we were sitting down to dinner and there was a small cup of milk on the table for Michael. That seems benign I know, but it wasn’t as innocent as you might think a small cup of milk is. For some reason, unbeknownst to me, my former spouse, SueSue (who was our next door neighbor, dear friend, and daily visitor), or the universe, when I moved the cup of milk to reach for something else, Michael had a level ten out of ten meltdown. There I was with a cup of milk that I had moved about a half of an inch (cause), which then created a twenty-minute screamfest that truly left me feeling insane (effect). I don’t remember much for sure. I imagine my former spouse, my friend, and I probably looked at each other, bewildered yet again, and Michael made it known that moving that milk was not permissible.

All right, so we had this milk incident and we had this high-intelligence issue and we had the sock and shoe thing going on, among many other curiosities that didn’t make sense. Obsessive Compulsive Disorder (OCD) was now on my radar and I was gonna talk to my pediatrician about this. I was frazzled, I needed help, and I really didn’t know what was going to happen if I didn’t figure this “thing” out, even though I didn’t really know I had an official “thing” yet. I made an appointment and said I wanted to talk to the doctor about some of my son’s behaviors that concerned me. I got the appointment and I was actually feeling ready to talk.

A little background about me will be very helpful to set the stage for this moment that is about to happen. I was incredibly codependent at that time. I had not yet learned to stand up for myself, and speaking my truth left me feeling catatonic and puddle-like on the floor. I typically allowed people to do what they wanted and say what they wanted with no reply or rebuttal from me, just sadness and subservience. To say I had no backbone would have described me quite well. And I certainly hold no shame around that; it simply was where I was. It is not where I am today, and I say that with a mischievous, lovely smile. So with that being said, this was going to be a very difficult appointment for me, on top of having this child that was an enigma. I was going to have to say that I wasn’t perfect and my son wasn’t perfect, which felt as if I was admitting complete defeat.

I made it to the doctors’ appointment and there I was in the office with the doctor and Michael. Michael was doing his normal screaming. (You’ll be shocked to know that Michael screamed for the first year and a half anytime we went into the little room where you wait to see the doctor. Maybe you’re not totally shocked, but I just wanted to point that out.) We’re in with Michael’s doctor, mind you, not a therapist or a psychologist or anything like that; it was Michael’s pediatrician. We considered whether or not to go to the lobby, where there were some toys that he liked, but he ended up calming down, probably because I nursed him to shut him up quiet him down.

I started in with the whole, “He’s so different and I really think there’s something like OCD going on with him.”

Pediatrician: “No, no, OCD is like hand washing.”

Me: “But . . . but I moved the milk about a half of an inch and he freaked out.”

Pediatrician: “Well, that could be something else, blah, blah, explanation, blah, blah, hand washing, blah, blah, but I don’t think it’s OCD.”

Me: “No, no, you don’t understand; there’s the whole shoe and sock thing.”

And then I remember it. I remember the feeling of crazy, full blown, I have no idea how I got here, and I do not know what to think, how to act, what to feel crazy, and I’ve still got to take the kid home with me. Seriously? I don’t think I want him anymore. But I’ve got all this time invested in him and he’s still nursing. I think I have to take him home, like, it’s actually required by law. And who else is going to take him anyway? I’ve never heard of lemon laws with children. He’s definitely broken and not a “normal” kid. Is it OK to even admit that out loud? I need a break because this isn’t going well and I really, really hate my life.

Small me: “OK, doc, thank you for your time.”

There it was, my very first experience with admitting that I had a high-need child (kinda). It didn’t go at all how I had expected, if I actually had any expectations in the first place. How was I to have an expectation if I didn’t know what this thing was, if there was anything besides my own imaginings? I can’t even envision, as I sit here today, how my life would have been different had I known I was not crazy when he was one. I wonder what would have happened had she said, “Hmmm? You’re concerned about OCD. Maybe you could go see this psychotherapist I know that looks at young children.” Or “I’ve heard of this. Here’s a book I can recommend based on another patient that had something similar.” Or SOMETHING besides, “No, OCD is all about hand washing!”

 

 

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.

Other People Are Heroes

While my son cried (loudly) today and stated his displeasure over and over again, I had choices to make. He was communicating his chagrin to the head of the school and his teacher. I was in the lobby on the other side of the door. He knew I was there and I knew he was there. He wanted to be where I was. I didn’t want him to keep on tantruming. I just wanted the wall to get painted and then go home. It was one of the “not-so-much” moments in my life.

And all of the school people were witnessing what happens in my home often, as Michael doesn’t tantrum at school very much. And please, know I will claim my stuff, but “giving into him” is not really something I do too often. Or maybe I do, but that’s not this post (notice how I dodged that one? I’m very sneaky I think . . . although I’m writing this, so maybe I’m not sneaky at all . . . now I’m just rambling and that’s not doing anybody any favors).

So I was in a position to do several things:

  1. I could go in and “rescue” him from what it was that made him upset (me being late) and change all of my plans (Stop the painting, take him home, and reschedule in hopes that the sun, moon, and Earth would align perfectly so I could get the wall finished this month. He actually had a breakdown that postponed it the first time.).
  2. I could ignore it (this is what I actually did) and let the other wonderful people in the building handle it.
  3. I could go in there and scream at him to “stop!” Give him some extreme consequences and use fear as my teaching tool.
  4. I could walk out, go get coffee, not answer my phone, and pretend like I was on a cruise to Hawaii. Let them take my kids home with them (hey, I’m sure it’s been done before).
  5. etc., etc., etc. . . .

I chose answer #2. It wasn’t my “instinct” for sure. My instinct is to protect him and nurture him and take him to safety. There’s a section in All Cats Have Asperger Syndrome by Kathy Hoopmann (one of my MOST favorite books EVER) where she writes, “Sometimes his parents feel sad, wondering why they can’t understand their own child, and they can become very protective.” Well, if that doesn’t bring tears to my eyes each and every time I read it, then call me fuddle-pop. Because I know from reading that, that I am not alone and that other parents have protected their children and that now their children cry for two main reasons: because they get what they want and because they simply can’t handle what’s happening. It’s too much.

Listen to me read it here: https://www.youtube.com/watch?v=FmGS3HZ6WJw

Discerning between the two cries is the challenging part. Clearly, he was crying and pleading and threatening so he could be close to me and he wasn’t getting that. The reason I chose #2 was because we talked ahead of time about me painting while he was in aftercare. That is what was expected. I would be in the lobby, and he would be with the other kids.

I believe it all would have been fine had the emergency vehicles cleared the roads sooner and opened the traffic for me to get through. But that didn’t happen, so I was late. The brain-train Michael was on got derailed and then stick-a-fork-in-him because he was done. I’m shaking my head as I write that. It IS a crazy life with these different brainers. If I’m a few minutes late, my whole life shifts on a dime, which is what happened this fine afternoon.

There are heroes in my life. The reason I could choose #2 is because Michael’s teacher, the head of the school, the other teacher, and the assistant are all on Michael’s team. Now, letting him cry like that might not look like the loving thing to do, but Michael is in fifth grade. They are committed to helping Michael prepare his beautiful spirit for older grades. Deep breath. I know, it’s WAY hard to let go. But let go I am going to do, and I’m going to do it with love and grace and late night blog posts. Cuz that and Pocket Frogs are my therapy. 🙂 And both his teacher and head of school had discussions with me before this year started about allowing them to help him through these times. Well, these “times” are here and they’re very much more difficult for me than for Michael. He seems totally fine now and I’m still dragging myself from the squished blob I was on the floor. I may have even been stepped on a few times while I was down. Who knows? I don’t. I’m getting up though.

Thanks to the heroes for taking care of our children. They’re out there. Not everyone champions these different-brained humans, but those that do make life so much more beautiful. My heroes on this day stayed late, which they didn’t have to do. They did their work later, which they didn’t have to do. They made a choice to help my son for the hour he struggled by calming him, consoling him, reasoning with him, offering him alternatives, and being gentle, kind, and loving. I don’t think they did handstands, but I am guessing that if that was in his best interest, they would have done.

I got them a bag of kettle corn from Trader Joe’s. I’ll write them a bouquet-of-gratitude e-mail tonight or tomorrow. I’m whipped now. Another day has happened and I feel like I lived eight years in the six hours of this day (from 3:30–9:30p.m.).