No School

Alex will stay home this morning. Over the weekend he continued to show the sleepiness and drooling like you all have been dealing with.

Both Saturday and Sunday Alex slept till nearly noon but continued his pattern of a couple hours of alertness then a period of sleepiness. So I can see while aides may think he is seizing. He seems to go through periods of alertness then down time. Over the weekend he said everything was yuck did not want to eat anything. Then I tried to engage him in puzzles but again got No, No, No.

He did perk up when the washing machine started. He was very much into loading the dryer and helping with wash. Then back to the office with me, at the desk, not wanting to do anything other than open and close the garage door. Soon he was listing to one side and drooling. As the day progresses to mid-afternoon I encourage him to, Go look at planes? No. Watch some trains? – No. Mac Donalds? – Yes.

So off we go traveling across the city. Knowing that when he says No maybe he really means No to something else (driving?). We get food and pull up by the airport – No, no, no. Off we go over to Whetmore and pull along the train tracks, No No No. I need to drop a package on the far east side so off we go and from there to the East Side switching yard. This time we see trains in action, so you think this is good? No, no, no. Fine. Let’s go home. No. No. No.

We do eventually go home. Make a fire and spend several hours just sitting and watching the flames. No activities. Nothing.

Sunday AM, around 2:15, he has a single seizure. He sleeps till noon and wants nothing for breakfast. Marycke makes it anyway and we get at the table, Yuck. No. No. No. Hmm, another fine day we have begun. Again I am in the office and I invite him to do a puzzle and watch some football (love those whistles) but I get No, no no. I sit him with me anyway and let him open and close the garage. Soon he is listing and drooling. Marycke gets him in the kitchen. Gets him to eat. Help with the wash. Back to Neal. Does not want to do anything.

Mid afternoon he hears the vacuum and goes out to help. He continues to vacuum for 30 minutes and then back to me. Just sitting there doing nothing he quickly reverts to his early drooling.

Now what? I have copied Ms Pape as I ask, what can we do now? Marycke suggested there maybe an area he can just lay down and sleep for 20 minutes when he gets lethargic. For example last night we had about 10 folks over for Bible study and Alex was hanging on me or wanting to sit in my lap the whole time. Eventfully he just went over to the floor, lay down and put his head on his arm and when to sleep. But then 20 minutes later e was up and engaging for and hour or two.

1. Do we have a place for him to sleep?
2. He enjoys coffee during the day while at home, can we provide you all with a thermos for him to get some in the afternoons?
3. Should he sleep in more and maybe get a bus later like 10 or 11?
4. When I ask him about school, I say ready for Ms Meehan?- No; Lane? –No Linda? Yes. Linda, run the vacuum, yes!
5. So can he do more work out of school if being busy helps he stay awake.
6. Do I need to make a badge for Alex to attach to his belt stating his likes, dislikes and verbal commands?

I did run into an aide over the weekend and she said Ms Meehan has not been at school. Not knowing Alex and how we works seems like a difficult job for a substitute. Also this aide, seeing Alex drool, kept saying ‘Wipe your mouth.’ And of course Alex did not react till I said, ‘Swallow’ We new people supervising Alex I think maybe I should make a tag for him to wear around his neck stating unique things about Alex. Like No does not always mean No. Or three means airplane. So to get me to wipe my mouth say, Swallow.

Sorry for the long post, just lots of issues going on. Just wanting to let you know we are dealing with them at home as well as you all dealing with them at school.