Day 551 – Grayson’s Journey

Dear family and friends

Grayson awoke with his switches in the "off" position today. He was slow to move, slow to react and generally just not with it. He was, as always loving and affectionate. So we count our blessings.

Regina and Grayson picked me up at the airport when my plane landed around 6:00 PM. We headed to Montrose to have dinner with Rita and Richard to celebrate Richard's birthday! Grayson was happy and content to eat sushi with us and was very good at dinner.

Even though the weather there was fantastic, it is great to be home after working all week in Seattle!

Pax!

Brant

Day 550 – Grayson’s Journey

Dear family and friends,

This morning I let Grayson sleep in a couple of extra hours – probably not a bad idea since he didn't fall asleep until about midnight. When I finally went in to get him up he was wide awake and smiling at me. I engaged him with my usual morning patter but this morning was different. Instead of my having to swing his legs over the edge of the bed to get him to sit up, he stood up entirely by himself with just verbal direction.

The rest of the day followed suit. He was bright-eyed and cooperative and he walked at a faster pace. This evening, when I walked down the hall to my bedroom, he initiated and completed a restroom sequence completely on his own. I stayed around the corner out of sight and merely observed – then, of course, followed with appropriate praise.

He has already gotten up from bed twice in the last 15 minutes. I suspect that on days with greater alertness it is harder for him to wind down.

We spent the day laughing, talking, walking, carrying, sorting, choosing, washing, and of course, hugging. Who could ask for anything more?

This is the day the Lord has made. Let us rejoice and be glad in it.

Regina

P.S. – Happy Anniversary to my sister, Rita and her wonderful husband, Richard.

Day 549 – Grayson’s Journey

Dear family and friends,

Grayson's on/off switch was switched off today. He was extremely non-verbal and had difficulty executing simple routines such as putting his jeans on.

It is now 11:15 in the evening. He has been in bed for two hours and I just put him back to bed for the third time. Sleep isn't going to come easy tonight.

In spite of all this, there was a high point. We sat down at a computer this afternoon and I helped him log in to his Facebook page. It was hard for him to concentrate so I read him notes that various people had posted over the months. Since it was one of his friends birthday, I asked if he wanted to post something on her page. He smiled and said yes. So he sat down and typed a short, two word message. This started a series of responses between Grayson and several friends. Since he holds the keys down a little too long, the spelling was creative but authentic. He even selected a new profile picture.

Knowing how much he used to enjoy the computer, I plan to make this a regular part of his day.

His door alarm hasn't gone off in half an hour. Maybe I will be able to go to sleep myself now.

May God grant each of you restful peace,

Regina

Day 548 – Grayson’s Journey

Dear family and friends,

As you know, Grayson is quite challenged verbally. It is easier for him to revert to silence or one word answers. When I ask him to repeat his answer in a full sentence he is sometimes able to flesh out a short sentence. What comes easily to him, though is silence. He will point to his mouth when hungry or to the TV for viewing time. It is effective but this shortcut will only handicap him further so we don't accept it.

For the last few days I have been trying an experiment. I wondered that if he didn't have to worry about his pronunciation or intelligibility, would he more readily engage in conversation. So I play with him using only the word "blah". I use as many syllables as I need and use my exaggerated inflection and gestures to convey my meaning. The rules of play are simply that he use the same language. "Hi, Grayson" becomes "Blah, blah-blah". He answers back similarly. Sometimes it is only an echo or a counting game. He really enjoys echoing blahs back and forth. Without much effort there is a closer semblance to a balanced conversation.

Today, after breakfast, I told him (in normal words) that it was time to go upstairs and take a shower. We were sitting next to each other. I did not make a move but asked him what I needed to do. "You have to stand up", he said quite clearly to me. I nearly fell out of my seat.

Play is therapy.

Thanks be to God.

Regina

Day 547 – Grayson’s Journey

Dear family and friends,

Grayson was fairly "with it" today. He helped me change his sheets without any reminders as to what his role was. He put dirty clothes in the laundry and picked up things he dropped without much more than a subtle cue. He executed his restroom routine with minor cues.

Later this evening, when I asked him what time it was, he said it was bed time. I pretended that I was stuck and couldn't get up from the couch. I asked him what I needed to do and he told me to put my feet on the ground. I then asked him what the next step was and he motioned with his arms for me to stand up. I asked him what the next step was and he told me to go upstairs. He was relating to me all of the steps I usually have him do when he is stuck - complete with all of the hand gestures I use.

It is so rewarding to see the memory pathways imprinting and to see the slight improvement in his ability to do something with the memory. I am so grateful for the encouragement this kind of day gives me.

May the progress curve continue to rise.

God's grace and peace to each of you this beautiful, cloudy day.

Regina

Day 546 – Grayson’s Journey

Dear family and friends

This morning was a bit of a rush. Lauren was out of here early to rehearse her bell choir piece. Regina and I were pretty pooped from last night, and Grayson was time consuming in the morning as usual – not difficult, but it takes at least 90 minutes to get him ready. We did a good job today and were at church early!

We had lunch after church then the boys went one way and the girls another! Regina and Lauren ran errands then had a pedicure while Grayson and I went home. Once home I started packing for my trip to Seattle then we finished setting up his computer and moved it into his room. This is one of the 14 computers that we removed from his room. This is the only one I deemed worthy of installing Windows 7 on and investing some effort in preparing for his use. The rest are chip jewelry!

The girls arrived home and I prepared a quick dinner for us. The evening was a short one – Grayson to bed, me finishing my packing with freshly ironed shirts straight from Regina's ironing board!

Pax!

Brant

Day 545 – Grayson’s Journey

Dear family and friends

It's Saturday! I was given the exquisite birthday gift of sleeping late (which I took advantage of) this morning before a birthday breakfast of turkey bacon and scrambled eggs (no fruit for me anymore!). While technically yesterday was my birthday, it was observed today. Good for me – a birthday is not a day but more like a season!

Grayson awoke a bit slow like yesterday and spent about half of the day in this place. Late in the afternoon I took him on our regular walk – half a mile up the street, and then downhill back home. It seemed to jump-start something and he was a lot more alert when family arrived this evening. At the end of the night he was quite alert and following all of our conversations.

Rita, Richard, Austin, Xixi and Lauren were here for my birthday dinner this evening. We had a blast laughing and chatting until way too late. In fact, they just left a few minutes ago and I am trying to get this blog posted before midnight!

Pax!

Brant