Pause and Reflect

Over the past month, the kids and I, especially James, have had to deal with a lot of new programs (doctors, summer school programs, etc.). It's been bumpy, but I've been here before. This has me thinking of what I pull from sometimes to cope with autism, learning issues, and behaviour/emotional problems.

I have a creative, visual style. Words are great, but there are many ways to communicate. I used to draw my feelings, stories, moods. I sang. I danced. I painted. I participated in group art classes and learned that no two people see the world in the same way, which is truly amazing.

I traveled. While in high school, college, and after. I learned the value of places that are public and offer services. I learned to be resourceful and friendly, while being alert to my surroundings. I found that the little things can matter more that the big tourism totems. I learned the value of listening. I learned how to change plans and change with them - because sometimes it ends up being better. And if not, there's always another change coming, and that one could be a really nice one.

I played sports. I learned to take being the only girl in a class of boys for swimming, skiing, playing soccer or football. Cross country taught me how to put my head down and focus on putting one step in front of the other to get through a rough patch. Swimming, yoga, and dance taught me how to breathe and let tension go. Just keep moving forward.

I have good friends, who let me vent, get weepy, and do a neat trick of soothing, humourous support of "yeah, this is crazy - now get back out there, Girl!" I have a really, really great best friend who from way back when saw life with me as a chance to turn challenges into a kind of game.

My family. My parents loved my brother and me - to the moon and back. I have such good memories of trips, reading, music, meals, jokes, and holidays. I want to share these with my kids and have good memories built with them too. I want them to know the security of having relatives who love them, unconditionally.

I read a lot. It helps me imaging other points of view. I learn constantly. It takes me away when I am stuck, sad and frustrated. When I need to rest or visit an old friend, I pick up a paperback, laptop, or Kindle Fire and access to almost any time, anywhere.

This makes me thankful I've had the chance to acquire a base like this.

I'd love to talk with other parents some day, and hear them talk about what they pull from to deal with their lives.

A Good Day

It's Friday, and I am in Starbucks having computer time, while ABA is going well in a corner, over the ever fascinating iPad. They are taking turns between talking about school, the weekend, TV shows, and playing Angry Birds. Talking about Angry Birds.

Yes, folks, The Angry Birds 2 Movie is coming out this summer, and we are going to see it:
 

James is doing a really good job, not letting the music put him off. It's kind of funk, but I can imagine him worrying it's some kind of rap music, which he does not like, because it's what he hears outside, with really bad language (a trigger) involved.

I got up early this morning and baked scones from scratch, then cleaned the kitchen before calling James. He came out in a good mood and ate four scones and some milk. We kind of joked around until it was time for school. He got ready and caught the bus. Again, he was in a good mood when he got home.

After I got home from work, I reminded him we had ABA and that we needed to go to a Starbucks. He went with a bounce in his step. He recognized the ABA associate (whom he'd met briefly, while really upset) and greeted her. Inside he picked out a table and they got down to it.

I'm thinking how going out for ABA has really helped change the dynamics. It's also helped that the ABA people are committed to working with me to make this work for James. They listened to me when I said there was too much emphasis on talking and answering questions. They listened to my instinct that going to more neutral ground might help.

I just got the day's report from James' teacher. The title reads "Great Day For James!"

Yes, yes it is!

Get Back Up Again

Thursday morning, James was a shaky wreck. We missed the bus. He could not focus to eat breakfast. James usually pops on his clothes, including shoes and socks in about 5-10 minutes. After an hour of waiting while he was "getting ready", I went and got him (which made things more fraught). He was close to a full-on panic attack when I pulled into the school parking lot. I remained calm and walked him to the office, where I explained in a low, calm voice what was happening.

"Thanks for letting us know," I was told. "We've got this." The woman was speaking as calmly as I was. Her eyes serious. She got it. I love this school.

No calls or texts, the whole day through, even though I had my cell phone out on my desktop, expecting them at any minute (because this happened repeatedly over this past school year). James took the bus home, and arrived in good spirits. He took being swooped up, as soon as I got home, to ABA at a nearby park in stride. Although there was no actual ABA services (there was a time misunderstanding) we hung out at the park for a bit, and said hello to some of his favourite counselors at the Boys and Girls Club.

We picked up pizza and went to go look for deer at Deer Hill North. We hit the deer motherlode: eight deer in assorted locations, ranging from the sweetest little spotted faun to full grown males with great, velvety antlers.

Home again we went. James settled down and ate some pizza and drank milk. Then parked himself alongside a gallon of vanilla ice cream. Normally I don't condone this, but this guy needs to put calories on his bones.

I read the daily notes from his teacher. James took more breaks for quiet time than usual and only had one point in the day where behaviours broke out. Otherwise, he participated. Such a difference: I was getting reports about his day on relevant topics. James went to school extremely agitated and returned calm. No undertone complaints about the staff or school (although there was some of the usual litany about past people that are associated with bad memories).

As I sat in the armchair in the living room, he began to chat pleasantly. Eventually, he asked about the Dad in Matilda. I picked up the book we'd checked out of the library last weekend and said "Hey, let's see what the author says about him."

After noisily resisting any reading whatsoever for over a year (broke my heart - I love reading), James listened to me while I read to him. I was hugging myself on the inside.

Two chapters later, my eyes were wanting to snap shut. I apologised and said I had to turn in, but we could read more tomorrow. "Okay, Mother," he agreed, and strolled off down the hall to bed.

I went to bed grateful and thankful. We were back up again.

Point Break

We are taking a break from ABA today. Last night, both James and I were in tears part way through the session. We eventually calmed down and had a good evening, morning and day. It's so frustrating that services that are needed, with such nice people are too much right now.

Some takeaways:

• James is overwhelmed with verbal interactions. It's pretty quiet at home and he's always had an aide to interpret for him at school and me at home.
• Because he's stressed (hypervigilant was a recurring term last night), James is not eating, which makes everything worse.
• I think James also feels like his safe space is being invaded. The ABA folks and I have a Plan for that.
• James really likes going for car rides. I think it's a great way to literally reset one's head.

In Which Little Things Confound

So ... James has been eating less again. During a recent late afternoon treat out for frozen yogurt, he came across ... something in his frozen yogurt. I still don't know what it was, but he is now deeply distrustful of food.

Which makes him cranky, and prone to hanger.

Over the last two days, there have been episodes of throwing food over a fence, eloping, and a whopping loss of control.

James is trying, but school is again hard for him. We have also started ABA services the other three afternoons of the school week, so that is more stress.

I feel discouraged. How I wish we had had some of this help earlier. How I so wish I knew what to do.

Tonight, I just sat down in the hallway to listen to James. After a bit, he sat down too, by me. He kept talking, about past aides who made him mad. About how he doesn't mean to say bad words. How his brain was running around. He still said he was not hungry.

After an hour, I had to get to bed. I told him it was time for bed and that I loved him. I got him into his room. How in the heck is it so hard to get a tall, growing teen boy to eat? I hope we both feel better tomorrow.

New School: Week Two

James started off the week spending the day doing processing exercises with Staff about the field trip incidents the Friday previous. A while day of story boarding what happened, how he was feeling, how it made others feel, and plans for how things could go better next time.

Storyboard from Wikipedia and  The Radio Adventures of Dr. Floyd 

Congratulations, he was told. After all your hard work, you've earned coming back to class - well done!

I want to say this has been a game changer.

Since then, James has dealt pretty well with ABA, trying to synch up with the school bus in the middle of our apartment parking lot being unavailable due to a noisy repaving project (which is where the bus is supposed to pick him up), and his teacher being out unexpectedly for much of the week. There have been behaviours, but they are smaller. A blowup about finding something unexpected in his frozen yogurt at home was brought under control by James himself within a very reasonable amount of time.

Field trips other that the group walks to the Farmers' Market are out for him for the summer, but he seems to be coping well with that. 

Yes, we are still talking about aides and principals who were involved with the most challenging school situations. But James also asked to visit some of his favourite counselors at the local Boys and Girls Club. We dropped by twice last week to say hello, and he was told he is welcome to come visit or some day returns over the summer. Yesterday he asked to visit the library for the first time in forever, and he asked about checking out a book (Matilda). This is a nice change!

One Giant Victory, Whole Lotta Meltdown

Ever since Winter Break of James' seventh grade, his school situation has gone from okay to bad, to awful to bring in a lawyer. I have been fighting and advocating extra hard for him for over a year. To have him do actual school work, instead of colouring book pages (no lie). For his teacher to show up to class so the aides did not have to try and make lesson plans. Actual speech therapy instead of lip service lessons. For his new aide to be an aide, instead of a babysitter. Inclusion in school field trips and back to school night (complete FAIL on that last one and the teacher showing up, BTW).

The new school district found the "best" school failing to comply with his IEP - no consistent aide for him at the new campus, no quiet places ... basically no accommodations at all for his 8th grade year. The principal zeroed in on him around and demanded in the first IEP meeting to have my son declared vicious and a danger to others. And that was with my lawyer sitting right there. To use current jargon, we couldn't even. All this while I was also dealing with the death of one close family member and another battling surprise stage 4 cancer, which not only impacted myself, but both my kids.

For James, I have been on a Mission to get him into a better school. The lawyer and I found one. It's a private school. After a saga of I Can't Even, the district offered placement there. Yowza!

Five programs. two school districts, and a private school later, James has finally landed in a program that is nurturing, supportive, and bursting with resources to help him be successful.

He lasted approximately 1.5 days of summer program before launching into testing behaviours. Throw in ABA services after dinner and starting at the same time as summer school, a week into recovery from two tooth extractions under sedation, and a being caught in a frigging ROCK FIGHT at our apartment complex ... and James wound up the week with Incidents on a school field trip: eloping into a road, trying to climb onto train tracks (miniature, and the train was not running), and hiding in the bathroom, not making good language choices.

Thanks, Autism Dad! 

These are the times I can't even cry. I just want to beat my head against the wall and repeat "no-no-no-no!!!" Until I can't think anymore. But I can't, because I have to finish work. Then be calm as I pick James up and talk with his teacher and deal with the meltdown stimming. All weekend long.

Laundry time exploded into swearing, plastic water bottle vengeance crushing, yelling sessions in the closet, screaming in the bathroom (with the fan on, like I would not notice), and, four hours later, clean laundry and many "sorry-sorry-sorry Mother"s.

But there were also fun trips to the Farmer's Market, seeing James enjoy spending his allowance at the Dollar Store, seeing people I don't know at the apartment complex smile at James and greet him with "Hi, James!" The good people who are always there somewhere in the public school arena. The calmness and positive attitudes at the new school. The lovely drive together to go look at the deer (fauns!) and vineyards.

And this week? Better. And so it goes.

Dental, the OR Way

So, oral hygiene and James do not get along. I am not good at getting him on track, because, well, life. Divorce, move, evacuation, deaths in the family, topped with a Really Horrible 18 months of school equals a LOT of dental work, including a back molar that James attacked after being hounded at his new school by one of its top administrators.

I know the drill by now. Talk about impending procedure with James, but not too much. Hide nothing. Remain calm. Be positive and encouraging. Don't think about the aftermath. Lalalalalalalala.

This morning I was up at 4:30. We were on the road about 5:30 and watched the sun rise over the wine country and big city commute traffic back up in the other direction. Checked in at 7:00 and got banded. Called back to pre-op about 8:10.

There we did the change to gown and four sets of review of Med History, surgery goals, and anesthesia plans while he was taped up for O2 saturation and heart monitoring. This staff is good. James downed two oral meds and opted to have the IV inserted while he was awake. It could not have gone more smoothly.

I walked him down to surgery. He was scrolling on the nurse's phone to find a YouTube video to listen to as they wheeled him into the OR room. That was at 10:10. It's 11:40. I have had breakfast, answered emails, and am settling down to wait. I figure I have another 45 minutes to go. I'll keep watching the OR board and think positive.

And: I have registration paperwork to fill out. A better school for James is coming. So thankful for that!