An Afternoon with Autism and Intellectual Impairment.

A good bit of my time goes as follows.

Oliver: Mama wanna sit down. *herding me to the living room and, after appropriate meditation, bringing me his tablet* Wanna watch kebbin aye bupette.

Me: Uh...*typing in Kevin Thomas Train as my best guess* Kevin's Cranky Friend?

Oliver: No!

Me: Kevin the Steamie?

Oliver: Steamie!

Me: Okay. Here you go. *settling in for the duration and hoping I won't get thirsty or something before the chain of videos ends*

5 to 10 minutes later when the video ends, or, if he's really tense, after about 30 seconds of the video

Oliver: Wanna put the phone back?

Me: *canceling video and turning off tablet* Okay.

Oliver: Phone back!

Me: *trying a different inflection as it has to be exactly right* Okay.

We sometimes go back and forth like this several times. Then, he walks off, returns, and restarts the cycle.

This can go on for 2 1/2 hours. I've gotten a little better at bringing rations and something to do. If Josh is at home, one of us has to stay in place while the other can briefly leave to make dinner or go to the bathroom. This is what repetitive-restrictive behaviors look like. It's not a lack of discipline. It's what he needs to regulate his nervous system. Meltdowns (which result if we wander off or can't figure out the video) are not tantrums. They're more like seizures. 

If the video cycling restarts every 30 seconds or fewer, it's literally impossible to do anything else. You can't read a poem. You can't write a full sentence. You can look at your work E-mail, but you can't do anything about it.

Reminder to self: Diesel's Ghostly Christmas is a two-part episode. The full show is not on YouTube. It is on Amazon Prime Video for free: Thomas the Tank Engine Season 19, Episodes 17 and 18. I just researched this for ten very stressful minutes.

And now, I need a nap. I've only been able to write this because he's watching several minutes of video at a time.

Daily, Weekly, Monthly, and Annual Ideals.

I took my list from my last blog about the kind of person I want to be and arranged that into daily, weekly, monthly, and annual goal lists. I made charts for these, and I'm using a pink glitter highlighter to mark what I accomplish. A full spot means I've done it, and a dot means I've worked on it (such as working on grading but not fully catching up).  

Ideally, every day, I will

1. Finish a book

2. Read poems

3. Read a story

4. Do yoga

5. Shower before noon

6. Catch up dishes

7. Catch up laundry

8. Pick up the house

9. Take a shower before noon

10. Eat breakfast

11. Eat lunch

12. Eat dinner

13. Drink 3 or fewer sodas from home

14. Brush twice

15. Floss once

16. Get an hour of touch

17. Stare/zone out for <30 minutes

18. Read visually

19. Listen to an audio book

20. Stay caught up on reading goal

21. Have no overdue library books

22. Do something sexy

23. Finish a writing product or work on a book

24. Journal 5+ pages

25. Do morning pages

26. Read to the boys

27. Update my marriage diary

28. Study something

29. Send a submission

30. Make Oliver’s lunch/prepare drinks

31. Blog

32. Listen to an audio book

33. Plan for 20 minutes

34. Take a.m., p.m., and night meds

35. Stay sober

36. Talk to a friend

37. Catch up on notetaking

38. Catch up on quotations

39. Update financial app

40. Play or do art

41. Daydream

42. Catch up grading

43. Catch up E-mail

44. Catch up training

45. Get a massage or take a bath

46. Clean and wear nightguard

47. Delete/file 50 personal E-mails

48. Talk with Josh

49. Read a magazine article in the morning

50. Update duotrope

51. Meet step goal

52. Meet stair goal

53. Keep up with library app

54. Keep up with Libby

55. Read art 

 

Ideally, every week, I will

1. Read a blog

2. Finish a magazine

3. Hang out with Bruce

4. Plan submissions

5. Cook for Josh twice

6. Go on a Saturday walk

7. Go on a second walk

8. Go on an artist’s date

9. Watch a movie or two episodes

10. Talk to Mom

11. Inventory

12. Have sex 3 times

13. Write a poem

14. Write a short story

15. Complete a chapter with Josh (reading, notes, writing, discussing)

16. Visit the library

17. Finish two books 

Ideally, every month, I will

1. Stay within my spending budget ($140 + planned expenses)

2. Finish a journal

3. Keep a positive bank balance

Ideally, every year, I will 

1. Read 31 poetry books in April

2. Read 31 poetry books in October

3. Read 10 children’s books in winter

4. Read 10 YA books in spring

5. Read 10 short story collections in summer

6. Read 10 nonfiction books in fall

7. Read 100 books

8. Read 5 award winning books

9. Read Best American Poetry

10. Read Best American Short Stories

11. Read Best American Essays

12. Read Best American Food Writing

13. Read Best American Travel Writing

14. Read Best American Science Fiction and Fantasy

Specific Goal for 2023: Read 25 art/fashion/design books

Specific Goal for 2024: Read 20 published diaries/books on journaling

Joy Despite Heartbreak.

Josh and I are currently separated. We're living in the same house but not as a romantic couple. Our goal is reconciliation, but we have a lot to work through individually and together. We started marriage counseling a couple of months ago, and we'll continue that. We each have our own therapist. Josh is starting EMDR for some traumas that are still affecting our lives. Josh is also in a support group and has been reaching out to family. I have been trying to build and strengthen friendships to help sustain me now and in the future. 

We've been reading books together since February, and we'll continue that. We've read Boundaries in Marriage, Beyond Boundaries, Emotional Intelligence 2.0, and Becoming the One. Josh has listened to most of them while I've read the books visually. That's what we're doing now with The Body Keeps the Score. He's well ahead of me because he listens to the book while he runs. While I finish TBKTS, I think we'll both listen to Brene Brown's The Power of Vulnerability. Our counselor recommended Brown's work, so that's where we'll start.

We still see each other, parent together, spend time in the living room or study, talk, text, and E-mail. The biggest obvious change is that we don't touch. I hadn't realized how integral touch is in our relationship or how essential touch is to my self-regulation. We've always been major snugglers but especially lately as we've been trying to strengthen our marriage. Right now, the marriage is on hold while some key things happen. I don't know what all of those things are, but I hope they'll become clear as we go. I don't know if this will take weeks or months. I don't know how the shape of our lives will change. We're trying to keep everything as normal as possible for Oliver, who is now out of school. Josh is working long days this summer, so I have to keep myself going for Oliver, who is almost always with me.

I'm struggling with the need for physical affection to feel loved and with the need for physical touch (firm or soft, depending on how I feel) to help me process and manage emotions and the physical manifestations of emotions. I've been spending more time with Bruce and Corey, and they give great hugs. I'm finding other ways to fill or calm my need for touch, including focusing more on my other senses.

How does one hold onto joy in the middle of heartbreak, daily tension, fear, loneliness, and uncertainty? That's what I'm trying to learn. Going back through some old blog posts has been helping; this blog represents some of the best in me, my greatest determination to be content and at peace, to embrace joy.

Here are some steps I've taken and some ideas I have on what else to do.

Take hot baths. This eases my tension, calms and comforts me, and engages my skin and muscles--my sense of touch.

Seek hugs. I let the hugs I get last longer than usual, be firmer than usual. For the first time in ten days, I hugged Josh last night. It felt natural. I didn't feel unsafe, desperate, depressed, or intoxicated. So I think we'll hug daily. We both need it.

Savor the weight of blankets. My bed has the perfect blankets: a down comforter, a cookie monster (my term for a particularly fluffy blanket. This one is Shabby Chic from Target, aqua with satin trim), and a fairy comforter. The weight of them is perfect for me regardless of season--so comforting. So I stay awake long enough to feel that comfort on my body and the coolness of the sheets on my skin. 

Use my heated blanket. In the living room, I have a heated blanket. I want to get a heated blanket or wrap for the study eventually. Heat soothes me, and I'm often cold. This is another way to comfort myself and engage my sense of touch.

More to come...