Sunday and Monday

At Saturday vigil mass I met up with someone whom I’d met before at the West Coast Catholic CM campout. She and her family were up camping in this area with a church group and had not known we lived up here. So on Sunday we went over to our local lake to hang around on the beach with them for part of the afternoon. It was fun and made me realize how seldom we get to do that. We talked about getting together again sometime either here or in her area in the southern part of CA.

Aidan just LOVED the water. First the kids went in the rubber raft our friends had and then I gave Aidan his inflatable tire. He spent the whole time in the shallows sitting in the tire being sloshed around by the wakes from different power boats. Of course, when everyone else was ready to go home, he did not want to and SHRIEKED. I’m torn in these cases between wondering whether this is a disciplinary issue or a special needs issue. Either way, (1) anything we can do to help him manage these strong emotions reasonably will be of benefit to him and (2) he obviously has a real craving for this kind of experience, since he is usually not so ferocious in his reactions. It is a very positive healthy kind of experience in itself so perhaps we need to find more ways to let him partake. I imagine some of his sensory cravings are addressed by the water play and also that the transitions in themselves are difficult for him but he has learned to cope most of the time. Anyway….. just thinking out loud. Lissa at Lilting House has a conversation about Discipline and Special Needs going on. To me it comes down to the fact that discipline and management are very close to the same thing in practice usually, or ought to be. But I don’t like those words too much because they mean so many different things to different people.

Yesterday, Aidan had a neurosurgery clinic at 11 am which takes up most of the day as follows. 9 am I start dressing the two little ones and getting together stuff to bring like change of clothes, seizure meds, books, bottled water etc. Load the car with the coolers and Aidan’s horrendously heavy wheelchair. Then at 9:40 strap them into their car seats, say goodbye to the older kids. Then drive for a bit more than an hour. Kevin unloads Aidan and me avec wheelchair and we go into the hospital while he and Paddy make a Costco run.

When you walk into a clinic and it is packed with people overflowing into the halls you know you are going to have a wait. We sat beside a mom and dad and grandma with a little boy with a trach, and chatted a bit about complex kids etc. They were G-tube feeding which opened the conversation because Aidan — who had been in a stressed out conversational loop “Where’s Dad gone?” “Where are we going after clinic?” “What will we put in the back of the car?” and don’t change the answers whatever you do — gasped and said, “I don’t have MY G Tube anymore.” So the grandma said, “You had a g tube?” and Aidan said, “It’s all gone now.” and so we started talking about feeding tubes and formula etc.

So we got out of there at 12:15 (only about 10 minutes was the actual appointment, the rest was the waiting room) and then drove over to Winco where Kevin took Aidan in to do some quick shopping and I stayed in the car to keep it cool in the 100 plus degree weather (since the costco stuff had already had to wait an hour in the cooler and would have to wait an hour more on the drive home).

Anyway, we got home about 2:30 and then zipped over to the hardware store to try to replenish our propane tank for the BBQ — for the third time and again no luck, someone was having about 20 keys made (!!!).

With the remnants of the day I did not do very much. Today we are back to our normal routine.

Clare has been reading Count of Monte Cristo. It is HUGE – about 1000 pages. What is it with these French romantic-period authors? Les Miserables was the same.

Sean is reading the Anthropos Archives, or rather, rereading.

Brendan has been reading Father Brown mysteries. So yesterday they watched The Detective. Their nightly watching has been Lost in Space. Ooh, I wonder if my husband has seen that link.

My husband has been taking daily walks with various of the kids (not the little ones, obviously).

Liam sounds like he is re-adjusting pretty well. Enjoying his classes and getting to talk with some of his comrades from last year.

We seem to be falling into a slightly structured academic pattern this year. Clare of course is driving her own vehicle because she really wants to prepare for entrance to TAC. Sean seems resigned to doing a bit of math. I intend to spring a bit of grammar on him. The older kids went through a good bit of Daily Grammar and it really worked pretty well for them. We have tried a LOT of grammar programs! Maybe someday I’ll list them all. That one was one of the more successful and least repellent to them.