Couch Conversations

On Friday night I let the Roc stay up and watch the latest episode of The Biggest Loser with me.  He likes to watch the contestants try to complete the physical challenges and see how they’ve changed over time.

I like watching with him because he gets so excited for the contestants and he cheers them on.  He sits next to me and says, “Come on!  You can do it!  Keep trying!” as they struggle to complete obstacle courses, grueling physical tasks, and puzzles.  He doesn’t like it when they cry and worriedly looks to me to see what I look like.  He often asks me, “Why does your face look like that?” as I hold back tears.  I can’t help it, watching the contestants transform is uplifting and sometimes their stories are heart wrenching, so it’s hard for me not to cry.

Watching with him has led to some interesting conversations on the couch.

This season there is a contestant who has trouble controlling his emotions.  He freaks out and yells when a challenge is something that makes him really uncomfortable.  I often feel uncomfortable watching this man get angry, and his man tantrums remind me of a certain someone who lives in my house.  I’ve wondered if the Roc would make a connection to his own angry outbursts and this man.  A couple weeks ago the Roc whispered, “Come on Rob, you can do it.  Come on!” as Rob got over his freak out and mustered up the courage to rappel down a waterfall.  (For the record, I may have freaked out if someone told me to do the same!)

“Yes!  He did it!  That looked so scary!” the Roc exclaimed while Rob celebrated his accomplishment at the bottom of the waterfall.

“He got pretty mad at the top didn’t he?” I asked the Roc.

“Yeah, he got mad like I do sometimes.”

I didn’t say anything else at that time and the Roc started talking about next challenge as the show moved on.  During last weeks episode Rob started to lose control again when he was presented the challenge of vertically jumping onto a box and the Roc said,

“Oh no, there he goes again!”

“He gets really mad a lot doesn’t he?” I asked the Roc.

“Yeah….maybe he has autism!” the Roc exclaimed, his eyes lighting up.

“Hmmm.  I don’t know, no one has said so on the show, but you never know.  Either way he really needs to learn to control himself doesn’t he?”

“Yeah, I’ve been working on that.  He should too.”

Later, during the weigh-in the Roc said the before pictures of the contestants “looked scary” and I asked him to clarify.

“Their bellies look scary…so big like that….that is not good.  Is that unhealthy Mommy?”

I agreed and then we talked about what the show is about:  How the winner is the one who has lost the most weight, and how eating poorly and not moving around enough had led to their weight gain in the first place.  By losing the weight they would be able to do things they hadn’t before.

“Like that lady who said she could be the fun Mommy now!” he said.   “Exactly,” I agreed.

Sitting next to him on Friday night I realized that he had been watching the show without any judgement or criticism.  He is all about the facts and never had anything bad to say about anyone on the show.  In fact, I don’t ever hear him say anything bad about anyone.  He doesn’t work that way.  In a world where we so often hear people around us making judgements and being critical of others, when they don’t know anything about them, it is absolutely refreshing to see that those thoughts do not come naturally to my child.  It’s not something I did, a way I did or did not parent him, it’s just part of who he is.  Though I would hope that some of the our conversations about negative experiences he has had with peers and the right way to treat others have sunk in…it’s just not in his nature to be judgmental or critical of others.

I love that about him.

Car Conversations

GC took the Roc to his weekly social skills class yesterday under the agreement that I would take the Roc to his hippotherapy session in the afternoon.  I savored the empty house while they were gone.  With GC working from home, I am rarely alone anymore and when I get the chance to be alone in our house, I realize how much I enjoy being by myself…and not talking about plants vs. zombies.

When they got home GC mentioned to me that the Roc got hit at class again this week.  It was news to me that another child hit him last week, but I didn’t ask the Roc any questions about the incident(s) right away.  I knew he wouldn’t want to talk about it.  He already had it in his mind that he would be having a smoothie and then playing plants vs. zombies on his iPad during the forty five minutes he would be home before he had to get back into the car to drive to the barn.  I knew I could ask him about it in the car.

Time and growth have changed so much for the Roc.  I can clearly remember driving down Rt. 13 in Delaware and pointing out the farm equipment and big trucks to a silent Roc.  The fluttery panic I felt when I glanced in the rear view mirror and couldn’t catch his eye.  Now he is rarely silent, but many of our conversations are monologues from the Roc about plants vs. zombies, a place we have been, or a movie the Roc has watched.  Or a series of questions of which he already knows the answers.  But that too is slowly changing and I know that he will sometimes talk to me on the many car rides we take.

So while I drove out into the country I asked him about his social skills class:

“Buddy, I heard that you got hit at social skills today.  What happened?” I asked.

“Not hit, pushed.  L pushed me.”

“Oh, that’s too bad.  What happened right before she pushed you?”

“She yelled, ‘This isn’t going fast enough!’ on the obstacle course and she pushed me!  That was so rude!”  His voice rising in indignation.

“She was behind you on the obstacle course and you weren’t going fast enough for her?”

“Yeah, I guess I wasn’t going fast enough for her and she pushed me.  I got so mad I had to go around the corner to calm down.”

“Well, it sounds like you made the right choice.  I’m so glad you didn’t freak out and scream or push her back,” I told him, knowing that he probably wouldn’t have touched her since he doesn’t like to touch people or be touched.

“I don’t like that she pushed me!  Why did she have to do that?”

“I know buddy, she shouldn’t have done that.  No one should push.  But you did the right thing by walking away.  I’m so proud of you for making the right choice.”

“Ok…but I’m still kinda mad about it.”

“You know that you can tell someone not to touch you right?  You can stand up for yourself.  No one has the right to put their hands on you.”

“Well!  I did!  After she pushed me I got mad and told her not to push me!  And!  She got even madder and she threw her stuffed animal down really hard and screeched at me!  That was when I went around the corner.  Why did she have to get more mad at me!  SHE screamed at ME!  SHE pushed ME!” he yelled from the backseat.

“Roc, I’m so glad you stood up for yourself and we are talking about this now.  You made the right choices.  You are growing up and learning how to handle yourself.  I think L will learn the things you are learning too.  It might take her awhile.  But you showed her the right way to react today.”

“I thought that would be my best choice.  I didn’t want to get in trouble.”

“Well, it was.  It sounds like L was having some problems making the right choices today.”

“Yeah!  You know what?  M showed us the smiley face he drew and L just said, Nobody cares, and that was rude.  She has a problem being rude.  And then M grabbed a couple pictures off the schedule and ripped them into pieces and said, There!  That will make it go faster!  And I thought, Man! What is up with these two today?'”

“Wow.  It sounds like social skills was pretty interesting today.”

“Yeah, I didn’t say that last part.  I didn’t let it out of my head.  I didn’t know if I could say it out loud.  So I didn’t say anything…”

We pulled into the parking lot right at that moment.  I put the car in park and turned back to the Roc.

“I am so proud of you Roc.  You are growing up into a very nice young man.”

“I’m proud of me too.  If we gave gold stars I would definitely have gotten one for that!  I would have gotten TWO purple sticks if that had happened at school!”

“Yup, you would have,” I told him as we walked into the building.  He immediately changed the subject to what makes him nervous about riding and we went through our familiar pep talk about the noises horses make and how it is important to learn all the steps of taking care of a horse, not just how to ride one.

A few minutes later, after he had gone off to brush and help saddle his horse, I started scribbling down our conversation, knowing that I would want to record it here.  When the young therapist came over and sat down I relayed the conversation to her and she said,

“He is growing up into such an awesome person.”

I wholeheartedly agree.

Awesome indeed.

 

Grasshoppers + Death + Life

The Roc and I went on a walk a couple days ago, and as soon as we came back inside he settled in with his iPad and I came up to my computer and started to record our conversation.  I’ve come back to this page over the last few days and written the rest.  He’s come so far and I’m so proud of the connections he is making and the emotional growth he is able to express.  I wanted to capture this time.

***

I have been pushing the Roc to converse with me instead of delivering monologues at me.  It’s really hard to talk about Halloween (since the beginning of August,) Plants vs. Zombies (since last Christmas!) and what we are going to bake next – over and over and over again.  Every.single.day.  It is extremely one-sided and the Roc has been expressing anger when I don’t listen and answer him with a distracted, “Umm-hmmm.”  I want the Roc to be able to converse with peers and adults (and me!)  So I’ve been pushing the boundaries of his language skills.  I prod him to give me more details about school by asking if something fun happened that day, and he is no longer allowed to say recess and/or lunch.  I tell him that I will only talk about Plants vs. Zombies for the first two minutes of our walks and then I try to steer him in a different direction.  I prompt him to ask me a question, any question he can think of, about me or my day.  He usually asks me if I had a good day and what I did.  Even though it’s forced and he told me he doesn’t actually care what I did that day, it’s a start, and a skill needed to get along in this world.

We’ve been going on a lot of walks lately, both to enjoy the weather, and also to get out of the house while GC is ripping out and installing new flooring.  It is so loud and the Roc has a hard time with the noise, even while wearing his noise-canceling headphones.  The grasshoppers are everywhere on the trails during our walks and the Roc tends to get frustrated when they jump right in front of him.  One day last week he got so mad that he stomped on a grasshopper and when I turned to look we both saw the grasshopper half smooshed, pulling itself by centimeters across the blacktop.  I gasped and said that looked like a horrible way to die and the Roc immediately crouched down and tears came to his eyes.  He told me he wished he hadn’t stomped on the bug, that it was living before he did that, and now it couldn’t go on with it’s life.  He asked me if I could fix it and hung his head when I told him I couldn’t.  We watched the grasshopper eventually stop moving and the Roc asked if he could mark the grave by piling up some grass.  After he did that he wanted to celebrate the grasshoppers life, which we did by saying a few words about the weather and how nice a life the little bug must have had in the park.  After some time the Roc said he was ready to walk on, but he didn’t think he would feel better for awhile.

Seeing how open he was I tried to make the connection of how the Roc felt about the grasshopper and how much worse it would be if we were to see a pet get hurt.  I mentioned how much harder it would be to see Guinness get injured and how devastated we would feel if we couldn’t save him.  Our conversation moved on to hunting (which he was talking about lately with GC ) and he made the connection that if it was hard for him to watch a grasshopper die, then it would be near impossible to watch a deer die.  (I breathed a sigh of relief as I didn’t really want him to want to hunt.)  He wanted to know why people hunted instead of just letting the animals live and I tried to explain population control to him, but he got stuck on wanting people to leave animals alone.

Talking about animals seemed to brighten the Roc up considerably and he launched into telling me about how more animals are made…and then people…I was fully enjoying the fact that we were not talking about one of his three main subjects of late.

“Mommy, did you know that one animal makes another animal and then that animal makes two more and then those two animals make more and more and it just keeps going?  Did you know that animals make animals?”

“Yes, Roc.  I did know that.”

“Did you know that people make people?” he asked me.  “Yup.”

“Did you make me?”

“Yup.  I did.”  I wondered whether this was going to lead to the question I don’t want to answer:  How did he get inside me?  Luckily, he didn’t ask that particular question.  Instead he brought up the miscarriage I had a few years ago.

“Mommy, remember that baby that was in your belly and it died?”

“Yes.”

“I still feel sad about that and I wish we could have had another kid.  I really wish I had someone to play with.  I don’t have anyone to play with and I really wish I did.”

“Well, I know you wish that and sometimes Mommy feels sad about that baby too.  But you know what?  I am so happy that I got to have you.  Did I ever tell you that when you were in my belly the doctors told me that there was a chance that I might lose you?  I didn’t know for a long time while I was pregnant with you if you were going to live.  It was hard and I am so thankful and grateful that I got to have you.  And there are some benefits to being an only child you know?  You get all my attention.  I can take you places and travel with you, like when we go to Arizona in the winter.  It’s lucky in some ways, that you are an only.”

The Roc pondered that for a moment and then said,

“Well, I still wish there was someone in the house to play with, but you know what?  I’m really glad that I was born a boy.”

“Really?  Why?”

“Because then I don’t have to grow a baby.  I don’t want to have to do that and so I’m glad that I don’t have to.”

“Yup, you are right.  You won’t ever have to grow a baby in your belly.”

Then he asked if he could talk about Halloween and so I told him yes..and I tried to muster some enthusiasm and attention for this repetitive topic.  My mind wandered back over what had just happened and the connections the Roc has been making lately while he chattered on about the desserts I already agreed to bake, the costume he was going to wear, the new decorations I already agreed to buy, the kinds of pumpkins he wanted to carve, and the decorations he was going to make.

I smiled as I walked on, half listening, and thought about how grateful I am to have the chance to slow down and savor life.  Everything is hard won with this boy and he works so hard every day.

***

Yesterday the Roc was inside the house while I mowed the lawn and GC worked on the floor.  I knew he wasn’t happy as I could hear him through the open windows telling his father to be quiet.  I loaded up the van with some stuff to bring to the town composting site and poked my head inside to ask the Roc if he wanted to come along for the ride.  He did and he told me loudly how unhappy he was that it was so noisy in the house.  He was agitated  in the car and screamed loudly about a butterfly flying near him in the van as I drove out of the neighborhood.  I could see his face screwed up in anger and his arms waving around in the rear view mirror and then I saw that it was moth.

“Don’t kill it Roc!  Remember how you felt when you squashed the grasshopper last week?!”

“I already killed it,” he told me.

“Oh no, are you ok?”

“Yeah, I don’t feel bad this time.”

“You don’t?” I asked him.

“No, it is different today.  My emotions didn’t come out.”

Huh.  I didn’t see that coming.

I hid my smile and turned up the music.

 

***

I love his word choices and how he is learning to express himself.  The growth is inside as much as it is on the outside.

I feel so lucky to be witnessing his transformation.

 

Letters + The First Day

The Roc and I skipped the chaos of the elementary school open house at the end of August, and opted instead to schedule a private time for him to see his new fourth grade classroom and to meet the new autism teacher.  This private meeting is something we’ve done since he started school, and I am always relieved that everyone is willing to accommodate him in this way.  The morning of our meeting, while he played in my big bathtub, I sat on the floor and asked him questions about school, what he liked and disliked and if there was anything he wanted the new teachers to know before school started.  I also tried to get him to tell me what things the teachers could do to help him if he was having a hard time, but he couldn’t tell me.  I took notes and used them to type up a letter.  I read it to him and he approved (mostly to get me to stop talking about school I suspect.)

Here are the Roc’s words, (except the first two sentences which I added) his first foray into self advocacy:

Dear Teachers,

My name is the Roc and I am in your class this year.  I want you to know a little about me.  I have autism and sometimes it is hard for me to stay calm.  I feel nervous about school when I don’t know to expect.  I don’t know the kids in my class.  I am also nervous about what will happen during the day (my schedule) and I like to know what comes next.  I am worried about what to do at recess and who will play with me. 

I hope I have a teacher helper again this year.  I need help and they help me in the classroom.  Then I don’t have to wait for the teacher who has to help everyone else.

I am good at recess and running.  I also like gym.  Daily 5 isn’t my favorite.  Reading and math are hard for me and I always have to do work.  Work is hard and I get frustrated.

Roc

***

Yesterday I followed that letter up with an email to the people who work with the Roc everyday at school:

Hello Team Roc!

With the new school year starting tomorrow I thought I would send you all a little note about how the Roc is doing since school let out in May and what we have been working on this summer.  I thought this would be good for those of you who have never worked with the Roc before.  🙂

We believe that the Roc’s success is a team effort and we are always available to answer any questions and we hope to communicate with you all as the year goes on.  We take our responsibility as part of this team very seriously and will gladly take any suggestions you have in regards to helping the Roc grow academically, socially and emotionally.

The Roc has had a good summer and went to a few weeks of ESY before we headed to SC to visit family for the month of July, he also participated in a day camp through True Friends as well as a 4 day social skills camp at the end of August.

As evidenced in the letter he gave to Mrs. fourth grade and Ms. autism teacher when we had our private “open house,” the Roc knows that he is autistic and he knows that he has a harder time staying calm than other kids.  He has expressed this summer that he doesn’t like that he is different and he wishes his brain worked like everyone else.  We are working hard to build his self esteem and show him that he is so much more than autism.  We want him to like himself and be happy with who he is.

The Roc is still having a hard time with mimicking other children to get a reaction.  He displayed this behavior with his cousins this summer and also during day camp.  We have been talking a lot about other people’s feelings and I recently bought a self-control & empathy workbook to do with Rocco.  Just a heads up that this is still an issue.
The Roc has been obsessing over spiderwebs for awhile and it has gotten so bad that he won’t eat if he sees one (my house is very clean now.)  I do not know if he will talk about this at school, but if you see him scanning the ceiling and all the nooks and crannies of a room–he is probably searching for spiderwebs.  I welcome any suggestions anyone may have in how we can help him overcome his spiderweb issue.
The Roc has been twisting up the left side of his shirts for many months now.  I bought a bunch of hand fidgets and while he does like to have something in his hands, he still twists up his shirt.  We are not calling attention to it anymore as he was getting very upset when we talked about it too much.
The Roc loves, loves, loves plants vs. zombies on his iPad.  He probably won’t talk about it at school because he said, “zombies aren’t appropriate for school and I don’t want to get an FYI.”    He has made up his own zombie game at home which he calls nerf gun vs. zombies.  We use a behavior chart at home that is plants vs. zombies themed and he earns tokens for positive behaviors and we take tokens away for offenses.
The Roc loves a good joke and is starting to be able to tell when people are joking with him. He loves to tell jokes, but needs a little work on coming up with them on his own.  🙂  (C told him to think of a few things that would help him have a good week this week and jokes came up.)  He doesn’t quite understand when people laugh because he said something funny when he didn’t mean to.
The Roc has a hard time looking people in the eye and he has told me it is because he doesn’t know what they are thinking.  I have told him he can look at someone’s forehead instead of their eyeballs if this makes him more comfortable.
Please know that we are always available to answer any questions or concerns you may have and we love to hear when you notice progress in the Roc. Feel free to pass this along to anyone else who works with the Roc.
Good luck tomorrow!
***

Last night the Roc freaked out a bit at bedtime (understatement) and even though he said he was mad because I let him play the iPad too long (I did) and I’m not tough enough to make him stop (Yesterday I wasn’t.  Hello end of summer, hanging on by my fingernails, whatever works) I also knew it was because school is starting back up.  I was proved right when he started to scream, “I hate my life!  I don’t want to go to stupid school!  It’s boring!” when I told him to get his pjs on and teeth brushed because he had to get some sleep before school.  Bedtime turned into an hour long cool down session with the white board.  I wrote what was making him angry: Plants vs. Zombies 2, the dog staring at him, and his clothes not going where he wanted them to when he tried to fling them from the second floor down into the family room.  Then I wrote some solutions/options to what was making him angry:  Stop playing the game forever, or for a few days, take a break, take a deep breath, call up the inventors of Plants vs. Zombies 2 and tell them they are greedy, stupid heads who made the game way too hard.  I wrote more silly stuff for the dog staring and clothes flinging issues and was delighted when he burst out laughing.  We eventually wrote out his morning schedule and I drew a map at the bottom of how to get to his classroom.  He didn’t want to talk about school, only asking if he would still ride the van instead of the bus.

***

It wasn’t as hard to get him up and out the door as I thought it would be this morning.  He did what he usually does on school days and dragged his feet through the morning routine causing him to run out of time to read (I read to him, either books from the library or Harry Potter) before the BUS came.  Oh my, it was a bus and not the van!  It’s been a van for three years!  The only thing he asked me the night before school started was if the van was going to pick him up and I hurriedly said, “Yup, of course!  You don’t ride the big bus, you ride the van.”  The look he gave me when a big bus stopped at the end of our driveway was of pure and utter shock.  He was speechless.  Lucky for him the bus driver seems super, duper nice and he asked me a bunch of questions while the bus aide (an aide on the bus!  Yay!) showed him to his seat.

I got an email during the day from Mrs. fourth grade saying that he was doing great in her room and was “delightful,” as well as thanking me for the earlier email with all the info on the Roc, that it helped her immensely.  I also got an email from Ms. autism teacher this evening stating that the Roc had a wonderful day, was a lot of fun, was nice to a younger student in her room, and only had one hiccup which involved him not being able to take another student’s perspective when they were upset.  I was glad to get these emails as the Roc would only tell me that he had fun at recess and then all he wanted to talk about for the rest of the evening was Halloween, plants vs. zombies, and what we could bake next (we bake together every week.)

We we made it!  First day of fourth grade over and done!

Obligatory first day of school pic:

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Slice of life: winter “break” edition

The Roc was watching a movie this afternoon and I decided to lay down on my bed and read a book.  The dog joined me and then GC did too.  I had a persistent throat itch that was causing me to cough and I took the opportunity to relax and close my eyes after reading for awhile.  I never nap and I never have time to lay down and read on the weekends.  Because on the weekends the Roc is home and he either needs to be shuttled to social skills, horseback riding therapy, or special hockey, and if he isn’t doing one of those things, then he needs to be set up with something to occupy his time.  We either need to play a game with him, play a toy scenario he has constructed in his mind, read with him, set him up with a craft, or put him in front of a movie.  We try to pull out the movie card only once or twice on the weekends.  It’s easier when the weather is nicer, because there are so many more choices.  He rarely entertains himself without support from one of us, even on the iPad, he wants one of us to help him.

When the movie was over GC and I both knew it, not only because of the song during the closing credits, but because the Roc appeared with his usual question of, “What can I do now?”  We gave him some choices, none of them involving either of us getting off the bed, and he wasn’t happy.  He wanted me to get up and do something with him.  (Which I have done a LOT of since winter “break” started.)  He even yelled that it was my job to entertain him.  Most certainly getting that from hearing me mutter that I am not an entertainer.  We stayed put and ignored him as he yelled and came in our room to bang on the walls.

For a few minutes at a time we could hear him humming and moving things around in the play area outside our room before he would come back into the bedroom.  During these brief times GC and I talked about our frustrations and the exhaustion that comes with this kind of parenting.  How even fun things, like going ice skating, often don’t end well.  We talked about the Roc’s happiness, is he happy?  It seems that he is only happy when he can do exactly what he wants, when other people react exactly as he wants them to, and when he gets exactly what he wants–basically when everything is how he expects it to be…which isn’t how life works.

I talked about the one thing I wished I could change, the screaming and the rude talking.  Two things really, but the rude words are usually delivered while screaming so they are intricately connected…anyway, I loath the screaming.  We kicked around some ideas the Roc’s behavioral aide suggested, a jar that we could fill when he is being respectful, ignoring and redirecting, a chart, etc.  I told GC we should make up a choice board with three or four things the Roc can do on his own, then teach him to do those things for a set amount of time, eventually lengthening those times to try to get him to entertain himself.  GC sighed with exhaustion.  Then I started to wonder aloud about food.  Is there something he is eating that he is intolerant to?  Because we see a change with strawberries.  He will go months without eating them and then we think, maybe it was in our heads?, and we let him eat strawberries, with disastrous behavioral results.

So an elimination diet is in our future.  As well as some reading about homeopathy and a visit to a homeopathic clinic I’ve been reading about.  I have a need to explore some other options before I start to think about opening up that pill bottle on my dresser.  Because after a few days like these, cooped up in the house, with lots of screaming, that bottle starts to look very inviting.

***

Later this afternoon the Roc sat outside the office door as I emailed with an autism mama friend about the clinic/drugs/autism, and we had the following conversation that shows just how hard these unstructured/unexpected days are for the Roc:

“Moooommmyyy, I feel kind of different today.  I don’t feel like I usually do.  I feel kind of weird and I don’t know why.  I just don’t know why, but I feel kind of different today.  I think my brain is all messed up.”

“You know what is different about today?  This is the first day in a very, very long time that we didn’t have something scheduled.  You didn’t have school or any “specials.” (he calls anything scheduled that isn’t school a “special.”)  We didn’t have to go anywhere, and you did leave the house to go skating, but I didn’t even leave the house today.  Today was just a do whatever kind of day.”

“Mommy…ugh, it just doesn’t feel right today.  Guess what? my brain’s all messed up.”

“I don’t think your brain is all messed up Roc.  Not at all.”

“Ugh, well you’ve been sitting on your bed for a long time and that’s not what you usually do….Ugh!  Today is…today is just NOT fun!”

“I think today was fun, it just wasn’t scheduled out and we were not busy…but it’s been hard for you huh?”

“Yes!  Today was NOT FUN!”

***

A little slice of our weekend.  These breaks from routine are not easy on the Roc, on any of us!  His conversation with me this afternoon was a reminder of how much the Roc struggles with the every day.  It shows me how far he’s come, (he can tell me what he’s feeling! HUGE!) and it shows me what we need to work on to try to make him comfortable in his own skin.

Around here: November

For my own personal need to document the big and the not-so-big, and for H, who said she missed my updates.  Here’s a recap on November, from my big camera, my phone, and my mind:

Guinness waited patiently…

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and then this started…

Camera HDR Studio - 1383745468670and now he spends his days like this.

IMG_2604The snow means I’m running inside on the treadmill.  (So glad we bought a treadmill back in July when they were on sale!)  I quickly blew through Orange Is The New Black on Netflix while running and was looking for another series to watch when I saw Parenthood on my list.  I had heard good things about it, but for a long time didn’t think I could handle a show where autism would be one of the topics.  I was wrong, or I’m watching it at the right time for me, but I am hooked.  Love the show.  It’s not just the autism storyline that has captured my attention, all of it has, I enjoy all the characters.  But I will admit to tearing up at more than one situation involving Max and his family.  There are moments, like when Max shrugs off his mother’s hands when she rubs his arm and the look on his mother’s face.  Or when the dad tries to take Max out of his routine for a fun day at the amusement park and it doesn’t go as he’d hoped….it just hits so close to home.  I think it gives people without a child on the spectrum a glimpse of what our lives can be like.  Some of the day to day battles, heartaches, and joys.  I talked about the show a few times and my parents started to watch it too.

***

OT Graduation!  The Roc was released from Occupational Therapy in mid-November after fourteen months.  I love his therapist, who is also his hippotherapist, so we still get to see her every Saturday.  A week before he was released she warned me it was coming, that she knew he was going to score in the average range when she did her sixty day testing.  On his last day she had me come back to the therapy room to show me his scores from his initial evaluation and then he demonstrated some of the things he couldn’t do a year ago.  She remarked that something really clicked in the last couple months and she saw some big gains in his physical ability as well as his confidence.  I wondered aloud if his being in the pool multiple nights a week had something to do with it…to which she agreed.

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The Roc still loves swimming on the swim team.  He isn’t always paying attention to the coaches when they are giving directions, and is then behind or confused as to what he is supposed to be doing, but he’s getting better about looking at the other kids in his lane and following their lead.  He will also call out questions to the coaches, something he wouldn’t have done a couple years ago, now we need to work on teaching him how to get their attention first–or better yet, paying attention when they give directions!  He can definitely keep up with the other kids in the water though!

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After an early morning dental appointment I got to walk the Roc down to his classroom and just had to talk a picture of what was taped to his locker.

IMAG0825I want that for you too kid.

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This.

This bottle is still sitting on my dresser.  Unopened.  In front of a photograph of baby Roc.  There are too many words to simply say… I’m not ready to go down that road.  We are not ready.  So that bottle of pills will wait.

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While going through old binders of evaluations and progress reports to scan into my computer (and then shred–too much paper!) I came across the Roc’s first OT session with his preschool OT.  I pulled it out to save, but not before snapping a pic.  He’s come so far.

IMAG0827His Christmas list which he wrote RIGHT after Thanksgiving with a little idea and spelling help.  Gotta love this kid who when you ask what he wants for Christmas says, “I don’t know, could you give me some ideas?”

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As soon as Thanksgiving was over and the wish list was on the fridge, the Roc started in on all things Christmas.  How far away it was, what he wanted, how many presents he would get, if we could put more lights outside (we leave colored lights in our pine tree year round) or a light up reindeer, and when we could decorate inside.  He got started decorating before I got the boxes out of the basement.

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He was satisfied with that for a short time and then went back to asking when we could get the rest of the stuff out.

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Not only has the Roc gotten into making his own decorations.  He decided one day to make his own memory game.

IMG_2608Which is totally cool.  He didn’t ask for any games on his Christmas list, but he’s getting a bunch.  We are working hard on playing games.

He also drew and colored this house when he spent the night at my mom and dad’s in early November.  Grandma doesn’t remember him making it, only that it was completed that Sunday when she woke up.  He got up and made it while she was still in bed.

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The Roc’s after school schedule has changed a bit with the addition of a behavioral aide.  He was on the wait list for this program for months and when his name got to the top of the list and we were offered a premium spot of 3:30 – 5:30 twice a week, I jumped on it.  His skills trainer would be stopping anyway and we stopped music therapy for awhile to be able to fit everything in.  His BA is young college graduate who works really well with the Roc.  He wasted no time and was himself right from the start.  Loud.  No honeymoon period for her.  He was very unhappy about being challenged.  But she has not been phased by anything he’s thrown her way and is very, very positive.  It’s nice to have someone so positive in the house and even though she’s young and doesn’t have kids of her own yet, I’m learning just by listening to her interact with the Roc.  She sees the small steps of progress and points them out to me, which is also so nice to hear.  Right now they are working on coping skills, his big emotions, and how to play board games.  Not getting his way and losing are huge triggers for the Roc and it’s nice to work on this as it happens instead of talking about situations.  Eventually we will add another child to some of the sessions so the Roc can work on these skills in real situations with other kids.

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My most favorite part of November was my trip with my best friend Christa.  It deserves a post of it’s own.

 

Love this lady!

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Up next!  Charleston with Christa!

The last resort

September saw the start of school and the continuation of all of the Roc’s after school stuff: swimming lessons, music therapy, OT, skills training.

First day of 3rd grade.

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Holy cow.  Only one more year after this one and then he will be on to middle school.  That fact boggles my mind and makes me want to dig in my heels and slow the earth down.  I’m not ready.

The adjustment into 3rd grade has resulted in more pull outs for academics, a few notes about “tricky” and “hard” mornings and/or afternoons, and once I got email letting me know that the day was “up and down all day.”  These notes and emails make me worry and think that he’s having multiple long and loud outbursts.  I spend a lot of time worrying and trying to ask the Roc details about his day, of which I get few.

While talking to a good friend who has a son with ADHD, who isn’t on anything, I realize that we are at a certain point when she says,

“I have to feel like we’ve done everything.  EVERYTHING else, and drugs would be a last resort.”

The Roc is understanding that things are harder for him than other children, that his volcano (his term for his big feelings) is bigger than most, and he has said things in the last few months that break my heart.  So when she says her last resort comment my mind flashes through all that we have done and lands on the image of the Roc grabbing his head recently and shouting,

“Why am I this way?  Why does my brain do this? I don’t want to be this way!”

and

“I don’t like the way I AM!!  What is WRONG with me?!!”

I realize we may be at that point, that last resort.  Because it’s more than academics, his self worth is at stake.

So in mid-September the Roc and I take a ride downtown to visit the developmental ped to talk about what big pharma can do to help him.  A road we haven’t taken.  A place we have been avoiding.  I spent a good chunk of time researching what I think the good doctor may recommend before our appointment and end up leaving without a prescription, but an offer to call it in if we want it.  I do more research and spend time talking to the Roc about how he feels about his volcano and medicine to help control it.  I call in the prescription and then go away for a weekend without picking it up.

I come back from my weekend away to GC telling me how well his weekend with the Roc was.  How they went bowling one morning and the Roc sat himself down and took a few deep breaths when he got upset about not knocking down enough pins.  How he said, “I’m thinking cool thoughts, like J taught me.”  (J is his skills trainer, and they have been working on the Roc’s explosions for months.)

GC and I attend the Roc’s IEP at the end of September and I walk into the building with a familiar sense of dread.  I’m not looking forward to hearing all the ways the Roc is behind and details about his outbursts.

When did I become a pessimist?

I am taken aback when the team tells me that although the Roc is still exploding, sometimes multiple times a day, the outbursts are shorter and he is calming himself down quicker.  GC and I make eye contact.  I didn’t expect to hear this.  I tell the team I am surprised, I had thought he was being more disruptive than he was the year before?

Maybe all that we are doing is working?  Maybe we do not need to fill the prescription?  After the meeting is over GC and I talk about all the little things that have slowly been changing with the Roc and also all the outbursts that still wreck havoc on our day to day lives.  GC tells me I cannot see the forest through the trees.  That I am holding onto what is hard and not seeing the things that are changing.  I wonder if he is right?  Did I become a pessimist?

I pick up the prescription, just in case.

We go back and forth.  Should we try the RX?  Should we wait?  What about the side effects?  Oh man, the side effects…

While riding in the car to OT one afternoon I start to ask the Roc questions about his volcano.  He tells me that he has a hard time controlling it.  I ask if he wants to try the medicine we talked to the doctor about.  He pauses and says, “Maybe I will be able to control it myself?…and if I can’t then I can try it?”

I swallow hard and blink back my tears.  I watch him in the rear view mirror as he watches the farm fields slip by.

***

The RX bottle sits unopened on my dresser.

On the hard days I wonder what we are waiting for, and on the smooth(er–because there is always something to scream about in this house,) I think he (and we) can do this.

I guess we haven’t made it to the last resort yet.