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We have had another week of emotional and behavioral ups and downs but we survived no worse for the wear! Bethany seems to be crankier in the mornings and then by late afternoon she perks up and is pretty happy and active, wanting to play games or hide and seek with Dad!!
I think this has something to do with her sleeping schedule. She falls asleep very late- around 2-3 a.m. and doesn’t want to get out of bed until 11-ish! Her morning lasts from 11-ish to 2 0r 3-ish and since she is not a morning person, she’s not really ready to start her day and be civil until late afternoon.
I’m trying to change this by waking her up a little earlier each morning, but truth be told, she wakes up even crabbier and then just takes a nap!!! Maybe I just need to stay focused and consistent and that will change? Who knows? But I like daylight hours better than moonlight hours, so I’ll keep on trying!
Beth also keeps telling us she’s having seizures. All of us have seen them including Kristin, her aide. They have been interfering with attendance at activities which is really, really, really annoying me and breaking my heart.
Please pray for her. We have a doctor appointment this week. We are going to be brave and bring up the possibility of getting her medical marijuana! Here’s hoping the doctor doesn’t think we’re kooks!
On a more exciting note: I’m sure I’ve mentioned this before, but Bethany is definitely not an outdoorsy girl. It’s been almost impossible to get her to spend any time outside in the backyard for years now, but this week she actually ventured outside and sat on the deck two evenings in a row, once at Daddy’s invitation and once without any prompting at all!
She has been talking about and greatly looking forward to going to Sylvan Beach. We are hoping to make it there for opening weekend this Memorial Day. We plan on taking her aide, Kristin with us so that we can actually catch a break too.
Sylvan Beach is not a place I feel comfortable having Bethany and just one other person going to alone. At a busy, crowded, noisy and potentially dangerous place like that, Bethany needs two caregivers.
I am terrified just thinking about Bethany not waiting in the bathroom for her aide if she finishes doing her duty first! This has happened to me many times at Walmart which is why Malcolm always waits by the ladies room door and I rarely ever take Bethany anywhere alone by myself!
Caterpillar update: We still have one that is alive and one that is a cocoon now!!
Our next big news is that Rachel graduates college this Saturday with a TESL degree. That’s Teaching English as a Second Language! I am so thankful that I will be able to attend her graduation ceremony.
She just purchased her plane ticket to Georgia for job training and will definitely be leaving for her job in another country on August 12!!! She’s committed to teaching there for two years, but she’ll have two air fares back home provided that she plans to use to visit at Christmas time!
It will be so weird not to have her here anymore. She will most likely never live at home again! I’ll really miss her but I would never ever consider trying to stop her from pursuing all her hopes and dreams!
In case you’re interested:
- The 5 Worst States for Disability Services and How You Can Help Improve Your State’s Ranking
- How Having a High Maintenance Special Needs Kid Affects my Mothering
- I am kind of tooting my own horn here but I’m so excited that my post, The 5 Top States With the Best Services for the Disabled, went sort of viral on Facebook this week!!! Well, viral by my standards anyway!!
As of today, Thursday 6:30 PM. it has gotten 4000 views here and has reached 21,917 people on Facebook and has gotten 1000 likes!! Compare that with my typical reach of 5-250, and well, that’s viral to me!!!
I’m also a regular writer over at the Firefly Garden. You can read my posts there by clicking here!