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.