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.

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.

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 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.

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.

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 ...