Today was a day of discovery that led to renewed inspiration!
As you know we have been struggling with Corey’s emotional and behavioral outbursts for a VERY long time. The fatigue of managing her temperament is literally a 24 hour job as she does not sleep through the night most days of the week.
We are always looking for distractions and new strategies/techniques to not only redirect but stimulate her interests and awareness towards cognitive growth, hoping this will balance the emotional piece. I hate to say it but the physical strides have been the easy part of her recovery!
Last night was particularly rough. Corey was up from 1 to 5am, screaming for more then half the time. Fortunately, she slept from 5-7am and I coxed her into short cat naps until about 10am. We headed downstairs to start the day. I was visibly exhausted and distracted. All I kept thinking was how can I help her through this? How can I help prepare her for the day she will be independent. Corey looked at me with concern and I openly shared some of my thoughts with her. She had no memory of the events through the night. We discussed her expectations of becoming independent. She wants to go to college, have a roommate, go to culinary school, have a boyfriend, get a job as a chef, get married and have children one day.
She asked where she was going to school. I had an honest conversation with her about what we have to do to prepare her for a class let alone attending college.
M – let’s pretend you want to take a class at the local community college. You will have to listen to the teacher, take notes (which can be taken via a voice app), read from your text books and comprehend the content to pass the exams for the course.
C – can you help me practice?
The last time we tried reading from a text book it overwhelmed her and gave her a migraine. She also struggles with visual field cuts. I went to the recipe cabinet and pulled her VoTech Culinary textbook
M – I’m going to ask you many questions because I don’t know what you see. (I randomly opened the book to a chapter on Eggs) First of all what do you see?
C – Words and sentences
M – Ok, can you point to each word and speak each word out loud so I know what you’re actually reading?
C – Sure, no problem
Corey leaned over the page getting a few inches from the text to focus on the words. She used her right finger to point to each word in the first sentence but did not speak the words out loud. It took her over a full minute to point, focus and process the words.
M – Can you say each word out loud?
Corey sat upright, looked at me and stated;
‘Eggs have been part of our diets long before humans domesticated animals’
I was stunned. I had to look at the paragraph and read the first sentence for myself to see if that was in fact what she just read.
M – You couldn’t do that a month ago!
C – well mom (pointing to the word) if I know that word is ‘domesticated’ then I can read!
Corey read 4 full sentences (taking approximately 5 minutes) before she began to fatigue. Her comprehension from silent reading was about 10% accurate but…she read the sentences! Our next trial was my reading the next paragraph out loud to her. Her comprehension improved to 20% accurate. I’ll take it!
We took a break from the culinary book and moved to money. I showed her several currency bills.
M – Can you tell me what you see? (her answer 9 months ago…a boy)
C – (pointing to each bill) a 20, 10, 5 and 1
M – What are they (I was expecting “dollar bills”)
C – (without hesitation) $36.00
M – you’re absolutely correct Rain Man…what are they called? (She laughed out loud)
C – it’s money
M – if you were going to Charming Charlies for a necklace and it cost 19.99 what bills would you give me to buy it.
Corey concentrated for a long time. She picked up the 20, then the 10 then put it back, picked up the 10, 5, and 1 and then reached for the 20.
M – tell me what your thought process is as you pick your money
C – I don’t have exact change. these dollars don’t add up to 19
M – (I laughed at how literal she is) don’t worry about that. no one pays with exact change! What would you pick if you wanted to buy a necklace for 12.99?
Corey handed me the 10 and 5. “you owe me $2.00”
M – if you went to Macy’s and found a pair of shoes for $32.00 What would you pick?
Corey handed me 20, 10, 5 “now you owe me “$3.00”
M – now you challenge me.
C – You are going to Old Navy to buy me a scarf for $15.00
M – WAIT A MINUTE…buy YOU a scarf?! (We both began to laugh out loud)
She worked with the bills but still needs recognition for US coins…which she really won’t need right away since no one pays with exact change!
Day in and day out we try new things, thinking and hoping the light switch will turn on. Incremental signs, flickers of recognition, often extinguished as quickly as they spark, teasing us, leading us to push moving forward because going back is not an option. Then one day, despite shear exhaustion we try one more time and BAM! She nails it!
9 months ago she had no idea what that square piece of paper was except it had a boy on the front of it. For many months she could type on a keyboard and text but couldn’t identify letters on flash cards. Letter recognition returned a few weeks ago. Today she read from a book without the words “moving and becoming jumbled together”.
Are we still exhausted, Yes. Will be keep trying, hoping, pushing and reaching, Yes. Today we were given a new entry in our book titled “Matter of Time”. Tomorrow we get up to create another new chapter…xoxo