Friday, July 23, 2021

Perspective, The Importance Of

Perspective. 

Autism has a way of expanding horizons and showing us there are multiple ways of looking at things.

There are multiple ways of communicating. 

There are multiple ways of being, experiencing joy, love, and contentment.

It helps me to keep this in mind, when I get frustrated with managing a life that includes Autism.


Here's to changing the world, one thought at a time.


Sunday, April 18, 2021

Autism Parenting While Sick

 Okay, my second COVID-19 dose (Moderna) is taking more out of me than I wanted. Thus I am doing something I have not had to do for over a year: Parenting while sick.

As per usual, parenting a child (or teen) from your sickbed s a lot like normal parenting, only more so. I have experienced several varieties of this: married, with a toddler and preschooler. on up through the ages as our marriage broke up, until I was single parenting it across two households.

I found several useful strategies - many of which are captured in this nifty article: "Mom Is Sick! How to Parent Like a Champ When You Feel Terrible".


Cleaning standards were relaxed to a ridiculous degree. I fell in love with our washer dryer (and I am eternally thankful that I did not get sick at the same time my son did when we lived in an upstairs apartment with coin-op machines below that were not often free). Dishwasher? I love you too (when you worked)! 

My folks helped too, but my dad was not in the best of health, so we had to be careful. Their grocery drops were lifesavers. I was not able to connect with a lot of moms and we moved out of my former support network, so while help from friends did happen, it was not often.

I am proudest of the times (years ago) that I could set up a reading tent or get this kids to set up blanket forts while playing with me lying on the carpet nearby. There was also blanket time on the sofa with way too much Nogggin TV. For several years, James' big sister was amazing with taking over as activities coordinator and bringing me my water. 

This time: We each have our own bathrooms - thank you, thank you! Our new place is small, so we can yell encouraging things to each other through the walls. Thanks to the pandemic - I have a stocked pantry and home deliveries are still widely available.

ABA is also on hand, coordinating goals to help clean the kitchen a bit and keep himself on his school schedule. Tomorrow is supposed to be an in-classroom day. Ummmmm. We'll see.

I hate being sick when my kids need me. I now think about what will happen to James when I am not here ... and make another note on my pad: "Transition Programs, etc." - because, yeah.

Friday, April 16, 2021

Back to the Classroom?

 Should I? Shouldn't I? -- Adults and parents struggle with this quandary. Autism parents, doubly so. 

Most recently, whether or not to allow James to return, part-time, to campus. 

Nay:

  • While staff may be vaccinated, the students probably are not. 
  • I am not comfortable allowing him to ride the bus until he has been vaccinated. 
  • Change in schedule and routine, at a time when he resists both bedtime and morning wake ups.
  • Food. What to pack and will he eat? Oh nos.
  • Bathroom. Sigh ...
Yea:
  • Get him back on a schedule. It will be hard no matter what. Slowly but surely will help.
  • James has already received his first vaccine shot. 
  • Staff are trained and used to James.
  • I can drive him, as the campus is maybe 10 minutes away and I do not have do leave the car.
  • It's only 5 hours a day, 2 days a week, with only 1-2 other students in the room.
  • We get a break from each other.
Result?



Despite receiving notification that there was a COVID-19 positive discovery on campus (the first week back), it was reassuring to be able to talk with the school and learn it was not related to his program. The staff is so positive, I feel confident he is in good hands. Proceeding with caution and hope.



Wednesday, April 14, 2021

Autism Awareness Month: 2021

This year, fewer posts. Our lives are still full of remote work and learning, isolation, hard things, and too much paperwork. The pandemic continues, and autism never just goes away. 

This week, I came across this post, and words of wisdom, again, from Feda Almaliti. I can't believe that she and her son are gone. I will share her words, because they are positive and helpful. They also keep her alive in my memory and heart.

"You Can't Do This Alone", by Feda Almaliti

Click for the full article in the National Council on Severe Autism

Saturday, January 23, 2021

Tall Teen Becomes Short Order Chef

This past Friday's ABA session included work on independence skills. It tied in nicely with both our current obsession with the Great British Baking Show and a nigh universal love of .... bacon!


James was extremely skeptical, but his awesome ABA Team swung him into -- cooking bacon. And not just any bacon, oh no. They brought a delectable offering from Oliver's.

At first, James retreated down the hall. Bacon smells when it cooks, and I don't make it that often. Then too, he knew that he would also be expected to touch and taste it this time. Trying new foods is not what James wants at all. But, he is growing still and needs to be comfortable with eating a wider variety of foods.

I watched, as discretely as a mom can watch her child in action to achieve. James did a great job of stepping up to the pan and using tongs to turn the bacon while the fat sizzled, snapped and popped. He even rearranged the bacon slices to lie flat and straight in the pan.

At the end of the session, he presented me with this tasty delight:



As they say on that show, attention to detail is what makes you an excellent chef.

Way to go, James - and thanks to his ABA team!

Wednesday, October 21, 2020

Lalalalala - Healthcare Type

So, I've known for a while that I cannot die while James is alive (the autism parent joking / not joking meme).

Now, looking at the copays and rises in healthcare coverage for the coming year, I realize I cannot be sick or go to the doctor, either. 

Which is a shame, because that could bring on a panic attack if I think too hard on that one. 

Cue the lalalala's, which are cheaper than Prozac ....



Wednesday, October 14, 2020

IEP via Zoom a la COVID-19 in 2020

 So James' triennial IEP was last month. Assessments were largely done online, with some phone calls. Because of COVID-19 and lack of guidelines for IEP testing and enforcement during a pandemic, this all happened very close to the IEP meeting. Legally, this all needs to be set up and results and proposed goals available two weeks in advance of the meeting. Normally the meeting and attendees are set. I hardly ever get the test results and proposed goals before I sit down at the meeting table, but that is another story. 

 In fact, with 10 days or less before the meeting, I still did not have confirmation that it was happening and who was attending. I had to call to to confirm this, as I had to plan my remote work schedule and PTO requests. The interview call with the teacher was 2 days before the IEP. 

I get it. Normally, I have notes prepared about how James is doing right now, where he needs support, and thoughts about goals for the coming year - not rubber stamping goals, actual helpful, educational goals. This year I had almost nothing.  

I was so nervous, because James' placement is up for discussion each year now. Luckily, this was renewed for the school year and what I still call Summer School. The meeting participants joined the Zoom call. It was one of the quickest meetings I have had for James. We are all iffy on the ability to set and monitor effective goals but we are giving it our best shot. I can always call for a meeting later to discuss or ask for amendments. 14 year into this and we are still establishing baselines ... 

Tonight, 49 pages and an attachment file with notes and questions, I have reviewed, signed, and returned, with comments/questions. I am exhausted.