Sunday, November 24, 2019

This Year Is Different

Look what happens, when your special needs child is in the right school and you are not having to fight for inclusion, proper placement, and education. Also, you finally have a place of your own again, fires be damned!


You can have the time and resources to buy your child a bed, so they are no longer sleeping on the floor, because they don't want to fall off their twin mattress that has grown too small over the past, chaotic year.

Silver lining for being evacuated due to a catastrophic fire last month ... I discovered that James could sleep in a bed, and well, if it was large enough. He adored snuggling up in the fold-out queen bed and was able to snooze through bathroom or kitchenette use in our hotel room.

Now he has a queen bed of his own that he helped pick out. I bought the frame on sale from a local store and purchased the mattress online. James also picked out his own bedding.

A big shout out to our friends, who helped put together the frame and un-spring the mattress from its VERY heavy box! You both are awesome.

Sleep well, my big guy!

Saturday, November 23, 2019

Thankful Gathering

Want to see what happens when you make a friend at school and you sit together with your friends and families at a school event, where the support and caring are through the roof?


This.

Makes the fight worth it.

Love you to the moon and back, James.


Thank you, Anova!

Saturday, October 05, 2019

Not Eating ... Again

Another week of behaviour issues. Another week of being thankful James is at a school prepared to deal with them and James as a human being. The Staff and I are pretty much in agreement that James is not eating enough. Again.

Even as a baby, James had a half-hearted interest in food. It was almost as though he ate to be polite. Then stresses and sensitivities arose, complicated by periodic, horrific bouts of constipation ... and James decided to stop eating. BioFeedback was a blessing, and helped get him back on track.


I sound like a broken record, but the last two years have been incredibly stressful. James now takes a bite or two of his food item, then tosses it. He is growing like a weed. I have stocked snacks that he will eat that have as much protein as possible. I provide meals regardless of whether or not he admits to being hungry. And still, this persists.

To the people who say "they'll eat if they get hungry enough" - I once thought this too. Then I had to deal with people who have eating disorders and special needs.

We will be moving again. Hopefully it will be a more permanent and grounding move. We will get the nutritionist back on board and I hope to brainstorm successfully with the school and ABA to nudge James back into eating more healthily. The struggle is real. I remain hopeful that solutions will be too.

Tuesday, October 01, 2019

Countdown To Moving

So, after divorce, home sharing, downsizing, home selling, displacement by a devastating firestorm that wiped out 5% (over 5,600 homes) of the housing market and drove an price increase frenzy in home sales and rentals that is still playing out 2 years later ... we have found a place to call our own and are in (dare I say it) the home stretch. Literally.

James has been asking to move over the past year. I try to communicate the home buying and moving process to him, but what he understands is "move = now move". Wouldn't it be great if we had a kind of moving advent calendar, where every day you can open a door and see today's task that gets you closer to moving? I think that would help both James and myself.

Seems like every time I turn around, there are requests for more paper, some of which can only be released if I can find the magic someone to release other papers that will allow the process of getting the definitive papers prepped for release. I swear on the heads of angels, that if I did not already have years of experience with IEPs and hounding out resources to support my kids and hunting the people responsible for sanctioning them over the phone and emails, I'd be over in a corner curled up, eyes closed, and extremely depressed.

James has picked up on this, and there are behaviours at school. Some of them similar to bad days last year. The outcomes are different, because of the new school and the people who work there. "It's going to be okay. We'll work together on this" are the messages I am getting. From both the school and my loan manager.

Is it November yet?

Here, I found this interesting video online while searching for a "moving advent calendar"

Sunday, September 29, 2019

Fall 2019 IEP - The Idyllic One

James' annual IEP was last Monday. For the first time in a loooooooong time, I did not stress, request backup, or have a lawyer in tow. Goals and testing were shared with me prior to the main event without my asking for them. Adjustments were made per pre-discussion with his teacher.

It was a welcome change - to come in the room, know they players, review testing, performance, and goals while knowing that the school has really been looking at James and his abilities. He still has a lot of supports due to his challenges and loss of skills after years of turmoil across 4 campuses and 2 school districts.

The school asked if I'd be open to functional behavioural testing. I have been begging the schools for this since 5th grade and it's been dismissed as unnecessary. So heck yes, let's do that.

The teachers and therapists all approached his IEP with good things to say about James, despite all his testing behaviours and difficulties in keeping him in the classroom. After each goal was announced, there was a brief discussion, a look my way, and "agreed" from me. I asked only a few questions for clarification, shared some insights missing, and suggested one additional goal, which was adapted with enthusiasm. We got this thing snapped along and finished within 90 minutes.

Last year it took 10 months across 3 different campuses to finish James' IEP. This included lengthy legal action on both sides. I wanted this IEP to be an opportunity to pull focus on where James is now, and a fresh start to build a strong foundation for him so he can live as independently as possible. I think this IEP did a good job setting this up.

I feel like Anova, James' new school, has our back, and I am savouring the moment.

Tuesday, September 24, 2019

Fire Season, Power Outages, and Autism

September is winding its way to October, Pumpkin Spice is out in full force, Halloween decorations are sprouting, and California is officially in Fire Season.

New this year - Planned Power Outages from PG&E, who can't figure out how else to stop their equipment from causing devastating fires. We pay more for this extra disservice too!



So, James for several years has been sleeping with the lights on. He hates it when the power goes out.

Then the Tubbs Fire happened and we had to flee in the middle of the night ... a couple of hours after the power went out. Less than a week after we had to move out of the only home James knew.  Now power outages are even scarier.

We have social stories, plans, and some cool items from our Nana that do not need electrical power:

Dimmable Warm White Light & Color Changing RGB Smart Atmosphere Lamp, from Amazon

 

 LED Switch Light, available at hardware stores and Amazon


James is still very anxious about the possibilities of losing power, especially during fire season. This is something I do understand, having been caught up in the Oakland Hills Fire and losing most of everything I owned and my childhood home and neighbourhood as well.

This is the price we pay for where and when we live. Most of the time, it's wonderful. For the next 6-8 weeks, however, it will be a nervous time.

Disclosure: I was not paid to post these items. I uploaded the images and links to share as a resource idea for other parents in need.


Sunday, September 22, 2019

Summer's Last Heat Wave

Temps rose again recently. We were in the 90s yesterday. After a very overcast morning, the last day of summer finds us at 84 degrees, just before dinner.

I would love to take James swimming at the pool. Alas, James and swimming are no longer the friends they used to be. He used to like splashing in a public pool, jumping off the side into my sarms and letting me tow him around to kick his feet.

Now he is tall enough to walk the pool and never get his head wet. A few times a year I can coax him in, when there's minimal pool activity. Getting him out can take 20 minutes.

I am glad that I signed James up for swim lessons when he was younger. He loves splashing in the local river and I think a balance between wanting to play in the water and having some history that makes him confident (but not too much so) around water is a very good thing.


I just wish he'd enjoy spending some recreational time in the swim pool again.

Saturday, September 21, 2019

Saturday Morning Life Snippet

James and I both slept in this morning. Yesterday was ... um challenging. TWO car fails. School bus fu. Work. It was looking for a while that my planned evening out in SF to attend a reunion of the KFOG morning show was going to go down in flames too.

But thanks to some awesome co-workers and my mom, who is awesome too ... plus a good mechanic and respite person with strangely absent traffic ALL the way down to West Oakland (not even on 80 in Berkeley, and I can't remember the last time that happened at 5:30 PM on a weekday) and insane luck of someone pulling out of a parking space in front of me as soon as I entered the BART lot ... I made it! And it was so much fun. I flagged my first Lyft ride and shared with two other Fogheads, who immediately felt like old friends.

Photo courtesy of Renee and Irish Greg's PopUP

So this morning, I am enjoying being where I am. I played with the cat, made scones, watered the plants, sat in the sun with my morning coffee and enjoyed it being the weekend, which includes chatting with James when he got up. He is puzzled at this thing called 10@10, which is grooving from my laptop, but willing to humour me. It's fun to remember who I was and to be a bit of the person again with James. It's fun to remember a time when life was easier and bring that a bit into the present.

Wednesday, September 18, 2019

Autism in Numbers

For myself, autism is 90% slog, 10% elation at breakthroughs and successes, at least 25% heartbreak with setbacks, 62% facing how my child cannot interact with his world, 110% trying to figure out how he can engage with and be part of the world around him in a way that makes his life meaningful.

It's 5,642% paperwork. 9,000% questionnaires. $$$ in endless unimaginable extra expenses (large and small) to cope with the disabilities. Paper filing to the 43rd power. The square root of 223% normal life for me. Advocacy into the infrared spectrum of colour.

Underneath and running through it all: love, tears, humour. Music, weird things being said, car rides, obsessions over flies and leaf blowers. Serious campaigns for eating, self care, and impulse control. Mean people, nice people, and YouTube. Higher numbers of kids diagnosed. Reduced financial numbers in state and federal budgets.

This has been brought to you by a tough morning after several brilliant days at the new school that suddenly devolved into self-injury. I am not precisely sure why he decided banging his head on the floor was necessary. We have talked, and hopefully this has been helpful for him. I want to hold him in a hug and make whatever caused it to go away. But he's not that little any more. Instead, I try for calm, work with him and his team, and love him hard.

We've had 2 TBS liquid ibuprofen, 7 crescent rolls, 2 glasses of milk and 1 waffle. Today is a percentage of compromises: 30% school, 70% home rest, and 100% let's try again and make better choices.

Monday, September 09, 2019

Developing Stories

Yesterday, James asked me where he would move to and what he would be doing when he grew up. This is the first time I have heard him talk like this and instigate a conversation like this. It is rather exciting for us both to start talking about it. I said he had time to think about it and come up with some plans. I also said he would have a home with me until he is ready.

Because we are looking again at moving. Costs of living are so out of alignment with what salaries are that even renting it too expensive. I'd rather take what money I'd funnel into covering my rent gap into a sustainable living situation. For a while I didn't see how it could happen.

Yesterday I got some good news that I am getting closer to making it happen. For a rare few hours, James and I were both blissfully and completely happy.

And that's okay.

James has been testing the hell out of the new school. I am so happy he is there because not once have they called to have me pick him up. They deal with the situation and are working on gaining James' trust. The messages I get back all consistently state that James is in the right place, they think he's a great kid, and they look forward to having him at their school. Some days it just makes me cry happy tears.

Meanwhile, we've paused ABA because, after a while of it helping, things got stuck in a rut and James started rebelling. He still refuses to bathe and has taken to trying to communicate via humming, because he's afraid if he opens his mouth, hair, or ash, or a bug will get inside. For those same reasons, he resists eating. He is almost 5' 11", so this is not great. A more stable home could help with those anxieties.

Moving is also a goal because the apartments are rough on James. He hates the noise and cursing that comes from the complex's swimming pool outside. And since he got caught in a rock fight some kids were having at the complex a while back, he no longer wants to go outside and walk around.

More as these stories develop ...

Thursday, July 18, 2019

ABA again today. They are talking about creating a video on YouTube. It's going to be a music countdown of his favourite songs.

James is giving him all American folk music songs: Polly Wolly Doodle, Shoo Fly Don't Bother Me, and Clementine. I love the fact that he is naming these songs.



I know they are not age-appropriate. Most 14 year olds want to seem as cool and mature as possible.

James is still grooving to his favourite songs, however. He is humming them as he makes himself some frozen waffle snacks. I love hearing him do this.

Monday, July 08, 2019

ESY Wrap

The Extended School Year (ESY), or summer school, as we old-timers knew it, finished up last Friday. It was supposed to be a fun carnival day. Supposed to be. Not so much for James. I am guessing the noise made him ... well, cranky.

For myself, I was looking forward to an unexpected day off from work by taking care of some household chores, going to the gym, and visiting a local winery. You know, like a grown up in the wine country during the summer. I headed off some stress by taking James to school. I could tell it was probably not going to be the best day but crossed my fingers, like most autism parents do.

I nailed the chores (putting laundry away, cleaning bathrooms and the kitchen in blissful solitude) and got in my swimming workout. I hesitated about going back home for lunch but kept to my daydream of visiting a local winery.

So I headed north on a beautiful day. Preston Farm and Winery did not disappoint. I sat down at a little cafe table under the trees, closed my eyes, and listed to the wind whisper the leaves of the overhead trees and the visiting families. And breathed. And relaxed. The garden was glorious.




I took a windy little country road back, windows rolled down (which I cannot do with James in the car) and... happy. Completely, in-the-moment happy.



Which is good, because as I pulled into the parking lot of my complex, the phone rang. The school was so sorry to bother me, but James had eloped into the nearby performance venue's upper bathrooms and was not coming out. Might I be available to pick him up early. "I'm on my way," I replied, turning the car back out to the road. I know this drill. At least I had a great morning.

"One moment," I was told. Hold music ensued for a couple of minutes. I kept driving. Thank goodness we live close by, I was thinking.

Then something different happened. The office had checked with James' teacher, and they thought they could get him back to the classroom by themselves. They actually preferred to try that. I asked if I could just come early and wait in the office. Sure thing, they replied.

When I arrived, everyone was calm. I got to talking with another mom, who asked me some friendly, relaxed getting to know you questions. She assured me that all the parents have their stories of how they struggled to get their kids into this new school. She shared how this was the best place for her child and that "everyone here will tell you the same thing." As she headed out to pick up her son, she waved and said she was looking forward to getting to know each other next year.

I cannot remember the last time something like this happened. It felt really good, after I got over being a little stunned.

James was in a testing mood: paper stuck in his mouth, rambling all over the office, and walking outside the office and looking in the window at me right after I asked him to stay in the office so I could chat with his teacher. His teacher still radiated positive energy and described the elopement and how they got him back (by letting him spot them, turning and walking slowly away. Stopping, repeating, until he was back in the classroom).

She said overall she could tell the day was hard and she appreciated him trying to participate before eloping. She said she was looking forward to having him in her class next year and hoped we'd have a good summer. She did an amazing job of letting me know what happened while making me feel it was just part of a regular day. I feel like she really understood - the behaviours, and most importantly, James. It was such a different experience from public school. Even when they people were nice, I left with James feeling tense, like we were constantly being caught out wrong.

"Did you get the invite?" she asked. No? Evidently, one of James' new classmates had parents who were throwing a pool party to celebrate summer. The teacher emailed me the invite. James was invited to a party by a classmate. The closest we'd ever experienced was when his second grade teacher had her end of the year party for everyone in her backyard.

This new school is feeling pretty damned good already. Feeling really grateful. And a part of something good.

ABA While on Vacay

We took a brief break from Applied Behavioural Analysis (ABA) the last few days of school. I spent about as much time calming down James afterward as he spent doing ABA. It was not worth the crying and further reduction in eating. Plus, I was getting no sleep and James was not happy next day at school.

Now, however, it is summer, and James can start back up again. We are back at our local Starbucks, because it has WiFi (which allows for the iPad to be used for his checklist and reward games of Angry Birds) and gets him out of the house (so he is not in his room all day or feels like he's being cornered in his own home).

There are some nice conversations going on right now, while James periodically gets up and wanders about. I am really hoping James settles down, over the course of a the next few weeks, and starts working on some of the self care and organizational goals.

In case you are wondering, here is a nice article that talks about ABA services and how they can be helpful to an individual who is autistic and their caregivers (usually family members).

I like being able to go in to work earlier and then having a break before ABA starts. I am getting some summer vacation too.

Friday, June 28, 2019

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.

Wednesday, June 26, 2019

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.

Monday, June 24, 2019

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!

Tuesday, June 18, 2019

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.

Wednesday, June 05, 2019

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!

Tuesday, April 16, 2019

New Food: Sweet Cinnamon Mini Crescent Rolls

Like many teens, James likes donuts (glazed, occasional treats) and cinnamon rolls (Starbucks, when on vacation and special weekend treats) for breakfast.

Unfortunately, he is growing fast and will only eat some of the foods some of the time, and those babies are sugar overloads and empty carbs galore. So I look for a happy medium to balance coaxing him to expand his list of foods he will eat and getting in as much of a healthy diet as possible.


Solution: Trader Joe's refrigerated pop and bake mini crescent rolls. Plussed. I add a little butter and small sprinkling of a cinnamon & sugar mixture before rolling the triangles and baking.


Voila! Better for him and fresh from the oven. First time he refused. Second time he tried some and took some to school. This morning, I had to work fast to snag a couple before he wolfed them down.

I will need to get some more. Luckily, a can of 8 mini crescents costs less than one morning bun or cinnamon roll from Starbucks. Oh, and they're Vegan too.


Sunday, April 14, 2019

Unique Peek At Language Skills

James scripts. Sometimes it's a conversation that incorporates YouTube videos and memories from 6 years back. His inner dialogue can come right out his mouth for multiple people - kind of like my brother and I each re-enacting entire Monty Python skits at the breakfast table, but much more mysterious and Dada-esque.

And lately, James has started mixing Spanish into his scripting. Appropriate use of words too.



It started when he was walking from the car to the apartment, and someone let their dog run around the property behind our parking space. It made James very nervous, to hear it racing around, barking. I heard about the darned perro running around afuera.

He will also try and drop numbers in Spanish into a conversation. He is fascinated with the teen numbers. Even though he asks me every time, he knows the proper name for the proper number.

Every now and then I will drop a few phrases in French. He likes to practice Bon Jour and Mercie.

I love this guy.


Sunday, April 07, 2019

Self Care Refocus

So, after a period of falling off the self care wagon, I am doing better at psyching myself up and mentally organizing getting James to practice more self care skills.

He's been really good about taking out garbage and getting himself ready for school (as in dressed and lunch made in time to meet the school bus).

Today we were able to hit a double header out of the park: Laundry and a bath. And when James punched the dryer bottom for the bottom dryer with his clothes in the top unit, he was able to come back upstairs to tell me right away and we fixed it together.

The bath water was warmer than usual - I think he needs warmer water to relax more in the bath. He seemed to appreciate it. He even stayed in a few minutes longer than the agreed-to 10 minutes of soaking. l think this bath broke a record for smoothness in operation and start to finish was very close to the 20 minutes I told him it was take (as opposed to a memorable bath that took about an hour just to get him sitting in the water in the tub. Amazing!).

I have secret hopes of hair washing tomorrow.

Saturday, April 06, 2019

Declarations and Life Goals

We are finally getting rolling with ABA intake, and hope to have services starting next month.

The last question was addressed to James: "What do you hope to get out of these sessions?"

His answer blew us all away: "I want to feel self-confident."

First: I love how James was engaged and made a crucial partner in this process.

Second: The honesty of his answer. This guy has a huge piece of my heart. I am cheering for him all the way, because this has to feel huge - especially at the start of his teen years.


Third: I'm not crying, you are!

Thursday, April 04, 2019

Fighting to Protect Endangered IDEA


What Is IDEA?

From Wikipedia: "The Individuals with Disabilities Education Act (IDEA) is a four-part (A-D) piece of American legislation that ensures students with a disability are provided with Free Appropriate Public Education (FAPE) that is tailored to their individual needs. IDEA was previously known as the Education for All Handicapped Children Act (EHA) from 1975 to 1990. In 1990, the United States Congress reauthorized EHA and changed the title to IDEA (Public Law No. 94-142). Overall, the goal of IDEA is to provide children with disabilities the same opportunity for education as those students who do not have a disability."


What's Happening with IDEA?

The promised 40% funding from Congress has not delivered, and decreases as levels stay stagnant (or are cut) and the need for services covered under IDEA skyrocket in public schools. I have seen the struggle to retain and train qualified educators and paraeducators in our local public school districts. It's become harder after fire destroyed a significant chunk of housing and increased cost of living in our area.

Our current head of education, Betsy DeVos, has been consistently trying to weaken or defund IDEA ever since she took office. Not only is she grossly unqualified to make decisions about education due to a lack of experience with the public, schools, and education, she doesn't care about the kids in public schools - especially the costly ones with special needs. She pushes charter schools, which may sound like a good idea at first but upon closer inspection basically shifts any responsibility for enforcement of IDEA off the shoulders of the federal government and leaves you at the mercy of people trying to make money off education. It's sneaky, and a huge leap backwards, widening the cracks our kids fall into between supports and services into something more like the Grand Canyon.

What can I do?

Contact your representatives in Congress and urge them to fund and protect IDEA. Show you understand it and that you consider it's enactment important for you and your community.

In March 2018 a Bill was introduced to increase funding and support for IDEA, S.2542 IDEA Full Funding Law. It has been referred to the Committee on Health, Education, Labor, and Pensions (that's Betsy DeVos, incase you were wondering). In March 2019 an amendment bill to the IDEA Act introduced, S. 866 IDEA Full Funding Act. Write and urge your representatives to support these bills.

Not sure who is your Congressional rep? Here's a website to locate your congressional representatives.

Why is IDEA Important?

  • Programs that benefit all students are likely to be cut.  Each year that Congress fails to meet its 40% promise, districts are forced to pay a higher proportion of the special education cost. Schools and districts have been facing budget cuts for years and there is a scarcity of resources in many of our nation’s schools.  As a result, districts are forced to make hard decisions about which programs to fund. Schools and districts are sometimes forced to divert funds from programs that serve all students (including students with disabilities) into IDEA. This should not be a choice schools and districts are forced to make.
     
  • It becomes harder to recruit and retain qualified teachers.  Over time, as districts are forced to put more funds into IDEA, they are unable to use those funds to increase teacher salary, decrease class size, or update classroom resources. The continual funding crisis makes it hard for schools to invest in the types of activities that will bring in and retain the best teachers.
      
  • Our schools cannot thrive until students with disabilities succeed.  It has long been proven that including students with disabilities in our general education classrooms benefits all students — those with and without disabilities. When schools focus on the success of students with disabilities, the school as a whole thrives. Until they have the resources they need from the federal government to fully fund IDEA, schools will continue to struggle to provide the comprehensive and high-quality services that students with disabilities deserve.
(from National Center for Learning Disabilities)

Wednesday, April 03, 2019

Call to Advocacy

Today in Sacramento a rally will be held at the Capitol for the purpose of highlighting the need for continued support of the Lanternman Act and a call to action for State Legislators to sign a letter that request $290 M to keep supports and services in place.

I know why this is important, because James and I have benefitted from services that came out of this law. For those of you who are wondering why this Act needs support, here is a good site: The Lanternman Coalition.

If you've ever wondered what you could do to help James or I, or someone like us, or if you just love to engage in political/social activism, I invite you to send a message to your CA State Legislators ASAP to show at the rally and sign a letter to fund services under this important law. The rally is this morning, 4/3 from 10 until around Noon.

I know time is short - so here are some links to make it easy:

Dear Assemblyman ___________:  I am writing you today to ask you to attend today's Keep the Promise rally at the Capitol to support the Lanternman Act. As a single parent of a child with developmental disabilities I appreciate how crucial it is to have access to services supported by this law. I am asking that you sign the letter sponsored by Assemblymembers Chris Holden and Jim Frazier, along with Senator Stern, to increase funding by $209 million to help retain workers who provide crucial services for thousands of families such as ours, and keep the organizations that provide these services open.

I have personally experienced the loss of several great people who could no longer afford to work at low wages for such services as respite care, behaviorists, classroom aides, and teachers. Living in a fire devastated area that is experiencing soaring housing costs puts hardship on us all. Having your support of the Lanterman Act is very important to us all who live here and will continue to be strong support for so many of us who live in not only Santa Rosa but Sonoma County.

If you would like to know more about why I ask for your support of the Lanternman Act, I invite you to contact me.

Yours Sincerely,

For more about what the Lanternman Act means to people and the community, the video below is great!

Thank you!

Tuesday, April 02, 2019

Inclusion Benefits Us All

From the time we started to discuss James' transition from an SDC Preschool to Kindergarten, I pushed for Inclusion. The school was against it. I can understand why - James would need a one-on-one aide, which is expensive, in addition to speech, O/T, and Adaptive PE.

But this is my kids and I had been reading about the benefits of early intervention since James was a toddler. I had also seen him be successful and really benefit when he was with typically developing peers.

In preschool, I enrolled him in our town's Parks & Rec preschool summer camp sessions. He'd been able to receive his SHAPE services one year at a private preschool his a regular class. He participated in group Swim lessons and later youth summer camp morning sessions (again through our Parks & Rec).

For all these classes, I first met with the program directors, introduced myself and James, told them why I wanted to try this and explained what I thought some obstacles might be. It helped that James was shy, cute as a button, liked people, and never bit or hit others. We always agreed that if there were problems, we would stop. We never had to, thank goodness.

What did James get out of this? Well, it help make him less isolated. People fell in love with him. Kids got used to him. He learned from his peers, and began to model more typical behaviours. His speech improved! I like to think it helped him develop some confidence.

The farther along the process I've come, the more I've noticed the flip side of Inclusion - society gets to know and become comfortable - even a little bit more - with autism, special needs, and disabilities. They become part of their daily lives.

And the kids? Let me just quote this PBS Kids article:

  • "Children develop a positive understanding of themselves and others.

"When children attend classes that reflect the similarities and differences of people in the real world, they learn to appreciate diversity. Respect and understanding grow when children of differing abilities and cultures play and learn together."
...
Given today's trend towards division and our government's attack on services and protections for those with disabilities, this is so important. We all need to remember and understand that we, us, humanity comes in all shapes, sizes, beliefs, and abilities.

Sunday, March 31, 2019

Spring Break - Better With Snacks

Went on the road with three teens for part of Spring Break. Destination: Santa Cruz. No, we haven't seen Us. I have fond memories of my undergrad time at UCSC. Both kids have been there before, and like it and the ocean.

The hotel room had a balcony with a view of the ocean. The weather was a fantastic sunny break between rainstorms. We spent an afternoon at the beach and enjoyed it. James did a lot of walking. We all slept great.

The hotel had a great continental breakfast buffet, which was a relief because James is being extra picky right now about what he eats.

The teen girls enjoyed bubble tea and shopping at the Pacific Garden Mall. James and I found our own places to visit, including the Pacific Cookie Company. I could tell this really hit the spot for James. He turned on his great smile and it stayed for quite a while. 

Friday, March 29, 2019

Out Like a Lion

This month started off just trying to push through until Spring Break. Then there was Spring Break! Then we got sick ...

Now in the last days of March, we have started ABA intake and at the most recent Triennial IEP meeting (which has been ongoing since September) I signed a release form for the school district to discuss placement outside of the public school district. Both of these developments make me want to roar - because it has taken a lot of work to make them happen.

ABA can help get James support to learn self care, from brushing his teeth to taking baths on his own initiative. It can include social events and opportunities. It means James and I get a break from each other. It means James gets help learning life skills to become independent.

Better placement for school goes a long way to my peace of mind for James' future, after disappointments and broken promises over the past 2 years.

Yes, I want to roar. Finally, help for James! Who is grrrrreat!



Saturday, February 16, 2019

Stormy, Weathered

Over the past week we've had weather. Some places near us received over 10 inches of rain over 3 days. In an area that gets an average annual rainfall of about 36 inches a year, that's intense.

We had snow on the mountains near us ...


We had hail that looked and felt like snow...


We had amazing rain showers with double rainbows ....



And par for the course, James was sick. So he stayed home for two days. He went back to classes for  Friday, and now he has a three-day weekend.

The apartment looks like a teenaged boy has been hunkering down for a few days. Luckily respite has finally started and that helped him do his own laundry again. There will also be trash hauling, fridge purging, and open windows. Carpe storm lull.

Wednesday, February 06, 2019

Eureka Trip

For years, James has seen the signs on the freeways that show the miles to Eureka. "What is Eureka? "Where is Eureka?" "Can we go there in 30 minutes?"

Last weekend, after a very tough week, we hopped on 101 and found out, taking in the journey:


Deer mural in downtown Eureka

Two thousand + year-old tree, which fell finally in 2006

James in Eureka

Bears carved from a redwood tree, still attached to the trunk.

On Super Bowl Sunday, we drove through a giant redwood.

Pulling in the side mirrors ...

Inside the tree