Sunday, July 22, 2018

Reflection, and A List

My wish list for a special needs caregiver retreat:

  1. Location needs: Nature and quiet space to reflect and destress. Meals prepared and no clean up.
  2. Speaker about why we’ve come, acknowledgment of what it is to care for someone with special needs. Importance of self care.
  3. Workshops for reflection, de-stressing, self care. Can include Yoga/stretching/pilates, nature walks, meal planning, routine building or core essentials for schedules/routines.
  4. Workshops for sharing advice/tips/support. Can include therapy sessions, writing groups and information sharing. Gather interest and contact information to form groups for advocacy for services, financial and conservatorship planning, tips to lobby government, and IEP workshops.
  5. More quiet time. Maybe group building activities.
  6. Group discussions/presentations: Dealing with stress, fatigue, and isolation.
  7. Teaming up: Share resources, contact information. Build lists to build your support group. Get scripted.
  8. More quiet time for reflection and de-stressing. Examine what renews you.
  9. Ending Speaker. Sum up. Encouragement.

Repeat at least once a year. This caring is for life.

This grew out of a couple recent rare weekends when I was able to get away from my regular routine and be in nature.

I realized again the importance of just relaxing and taking care of myself, for a change. 

It reminded me of the retreats I attended while growing up  --  how much better I felt while attending them and afterward, even though I was much younger and life was simpler.

It also reminded me how, even in the middle of break-ups, endings and some of the most un-fun adulting stuff ever, being able to attend a group function with others who "get it" provides so much emotional release and support.

I remember a "before" time, when dance, hikes, socializing, music, and making art made me feel like Me. How renewed engaging these activities can be for me. How much colour and worth they give to this thing called My Life.

This Retreat is a good idea.

What does your Retreat look like?

Thursday, June 21, 2018

Summer Solstice 2018

It's officially summer! It's hard to make plans this year, with all the family health issues and our first serious summer sessions with middle school, high school, and the local JC. I keep having to use my PTO for my family instead of my, more so than usual. Nevertheless, summer is still going to be good. So far we've had:

Our local Raley's is closed for renovation. Goodbye 80s/90s decor ... hello???

Annual Hot Air Balloon Festival! Winds this year prevented launches, but still had fun with friends.

We picnicked on the Town Green, catching up while the teens ran about and had a gleeful spree through the candy store.

Boys and Girls Club again puts on a great series of summer activities. James has signed on for two field trips again.

Another get together with friends by a pool, with California rolling hills in the background, under blue skies.

Visiting local parks and exploring the outdoors. Happy summer, y'all!

Wednesday, June 20, 2018

Slamming Into Summer

So seventh grade ended up badly. That's all I will say in this post. Suffice to say that come August James will be in a new school and new school district. Meanwhile, I am getting used to Teen James, who is now almost 5' 10" at 13 & 5 months. Still a picky eater, so he is a handsome beanpole. He no longer calls out "Help me! HELP Me!!!!" when I wash his hair, but hygiene is still a struggle. He's learned to do his own laundry at a coin-op facility and is learning to rule the vacuum cleaner. As for myself... after dealing with all the schtuff I don't post about explicitly online for way too many years, I am tired.

Meanwhile, this happens to be THE Best summer school he has had in well over over four years. First the classes are at the high school campus, away from the noise and confusion of the previous location (six years running). Second, the teacher is giving them all life skills: cooking, taking the bus,  filling out a job application, and buying things in the store ... what is not to love? Third, he likes the older kids and the teacher.

I am wrangling summer reading on the side.

Still dealing with way too much spitting and use of tissue and toilet paper. Also clogging toilets when upset about things. Trying to get ABA going. Still working full time. Still dealing with end of life and major health issues in my family. Still calling and writing those nuts in DC about how I feel about our current status for education, healthcare, and immigration. And that damned tax bill.

Thank goodness for good friends, good books, and Marvel movies!

And so it goes.

Sunday, February 25, 2018

The Big 13 Party

Even though James' actual birthday is in early January, we are all rarely ready to celebrate it with a party until a month (cough *or more*) later. This year we had some smaller family celebrations on and near his actual birthday. The big party with friends was today.

As James is now officially a teen, I thought he might want a different kind of party. We talked it over and narrowed down to Scandia or bowling. James finally picked bowling. This is not surprising - we have fond bowling memories.

The best way to plan a party for James is to find out who he really wants to come, then see if we can find one date for the party. We were pretty successful this time, thank goodness!

People trickled in. It did not matter because we had lanes reserved. We set up one lane with bumpers and one without. We had a ramp, just in case. We had cheese pizza, Coke, and Sprite. Guests included a friend from a socialization program, a friend from school and his brother, James' sister, and cousin. There were cheers, socialization, and Minecraft discussions. The oohs and ahhhs of opening presents mingled with devouring cupcakes from Oliver's.

No one lasted the full two hours, but that was okay, because everyone had a good time. Happy birthday, James!

Monday, February 19, 2018

Autism and Fear and Change

I have been watching as much of the news as I can take, about the recent mass shooting at a school and deaths of students at the hand of a former fellow student. I am so angry right now about so many things. So worried for my son.

Right now, I am reading about a lot of finger pointing. I am feeling second-hand anguish and rage. Who is to blame? The NRA, and their insane support of proliferation of gun use and consumption in this country. The politicians, who take their money for personal and political and let gun control bills and laws die in committee, along with out children and students in our schools. The schools, who rubber stamped troubled kids out of their system when they became a disturbance -- why are schools expected to be the experts on this, by the way? The FBI, for not following up tips that he was ready to explode. About the white supremacists, who trained this latest killer and went on record to say they did, although surprisingly that is getting little attention from where I am sitting.

You know what I am also reading about? Again? Autism. Autistic male teen, shunned by peers, anti-social, living with mom as parents are divorced. They could almost be describing my son. Almost.

James right now is happy and still focused on games and media from his childhood years. While not living with his dad, he does get to see him and talks with him almost every night. His classmates still greet him with shouts and friendly waves. I could list all the ways my sweet sunny kid is different from the killers at Sandy Hook and MSDHS. It won't help the fear that colours perception.

Fear that can lead police and other first responders to take my son down, or make school administrators look the other way and pass him out of their systems without getting into the messy and expensive question of how to help troubled kids on the spectrum. Fears that could start making his classmates look at him funny, and start to wonder if he will ever become someone like they are reading about in the news.

Also, we have puberty on the horizon. I know something of what is going to happen once those hormones hit hard. Already at 13, James is taller than my 5' 7". I am doing my best to do right by him, so he can be as well-rounded an independent as possible. Plus, I know I will make mistakes. It feels a little bit like juggling nitroglycerine. Every day.

James is part of a wave that is about to swamp the end of the public schools and services section. Adult communities and our world at large - they are a little better equipped to deal with differently abled, but where is their place? What and who are their supports? Our schools have been criminally underfunded, under-trained, and under-staffed, even before Betsy Vos came on the scene and started trying to dismantle rights to access and services for disabled and differently abled kids. The regional centers have been under financial attack at the same time. Here in California, Jerry Brown has shut down centers for disabled adults with no replacement available.

I feel my anger, building over time at all the budget cuts, trying to be swept under the rug, and isolation from socialization ... growing as my government takes away health care, mental health services, and punishes me for being a single mom thinks that "thoughts and prayers" are going to do it.

Troubled kids, teens, and adults cannot be made invisible. Closing programs to help and support them to save money or putting them off into a funded program that is not equipped to handle them or out into the 21+ population at large and hope for the best? Only works so far.

I am furious and what is being done to all our kids. To my kid. Politicians, talking heads, and social media noisemakers: take "heart broken", "thoughts", and "prayers" and STUFF it back down your throats. We're not here to bump up your polls or ratings.

I call elected politicians in DC (have yet to get through to one - more and more GOP office are letting calls go to voice mail, whose message boxes are full). I participate in protests (it does help). I write to elected reps. I show up to IEP meetings, and call them when needed to advocate for my kids; I take notes and ask for services. I work with the doctors to keep my kids healthy mentally and physically. I see some great people and organizations out there. I participate in research studies - how else will we learn more about causes and things that can help? I have talked with community leaders about needs and services.

It really burns me: all the finger pointing and "not my problem/why should I pay for" mentality and lip service out there.

We are all in this together. Act like it.

I pay my taxes. I have worked almost constantly since I was 16. I vote - every danged election. And I am teaching my kids to do the same. And my biggest hope is that change is coming, to wipe out organizations like the NRA, KKK, Tea Party and the current status quo. Because the job you're doing just is not good enough. In fact, it's killing us. And we are realizing we don't have to keep sitting down and taking it.

Wednesday, January 10, 2018

The Teen Years Start

Happy Birthday Number 13, James! 

This is what James found when he woke up this morning:

He brought cookies to share to school and in the afternoon we saw Wonder - it was James' choice. Talk about bittersweet for me. James enjoyed it - especially the friendship scenes.

You have come so far. I hope you keep moving forward and retain your sunny outlook. How much you have given me. I love you, Mother.

Sunday, December 17, 2017

Breakfast Breakthrough

James ate french toast again!
Behold, the French Toast Miracle!

For families like mine, this is close to getting him to eat scrambled eggs.

After a week of us both being sick and eating pizza because I had a stash of them in the freezer, this is a welcome change.