Sunday, December 22, 2013

I wish I could tell you...

....that our Christmas festivities have gone as smoothly as Thanksgiving's did. They have not. The excitement is doubled with having grandma and grandpa living nearby. (within 20 minutes!) I think we are fortunate as it is not exactly food related. It is schedule related, which I guess ties into meal times but it is beyond that.

With Prader-Willi Syndrome routine is very important. I try to keep to a concrete routine as much as I can but my brain doesn't work that way. I cannot plan out every minute of each day and definitely cannot plan it out for the week. That makes it sound like I do not have routine but for me it works like this- get dressed, breakfast, schoolwork, lunch, and quiet time. This all happens but not with an exact time. After we have a "quiet alone time" our schedule is looser to arrange for errands, interest led schoolwork, field trips, music lessons, and in the spring and fall, sports.

Without the holidays or special occasions like birthdays he seems to be okay with our schedule of events. When I have attempted to exactly plan out our week with him knowing every extra activity things tend to go badly. He will perseverate on the special events, which drives us all batty, and as we all know "things change". We have had vehicle issues the last 6 months so that has caused us to miss some events we would normally go to. We have had a lot of at home time which I do not mind, but A~man is more social than I am. ;) Plus, at times field trip dates change or have to be cancelled for various reasons.  I do see some progress in his thinking as I will say to him "things change" and he will repeat it to me and we are able to talk about the whys of how things change.

Consequently we have had a few REALLY big meltdowns in December. Like knocking my sliding laundry room door off it's track meltdowns. He hasn't been aggressive with us thankfully but we have had a few icky times. It does make me appreciate that this behavior isn't a norm for him anymore. It used to be for a few years. (and I was physically hurt a few times) Now? Once he calms down he feels remorse and apologizes. He has been doing this for a year when he gets out of control almost every time with absolutely no prompting. He asks for forgiveness which breaks my heart in two as I know he cannot help so much of it. What's a mom to do but freely give the grace needed plus a good supply of hugs for good measure?

Today my daughter asked if we had to do school work this week. *ahem* (in the past I say what days we have off during the holidays) I told her, when A~man was not within earshot that if she wanted to she could have the week off, but that A~man would be doing his work except for Christmas Eve and day. With his special needs and learning disabilities his day goes so much smoother if a part of his day is focused on homeschool help and as much routine as I am capable of. Now if it would only stop raining long enough for us to go see an awesome local light display!

Here are some photos I took today of A~man at his finest. Loving on our wonderful dog!

Totally rocking his pink PWS awareness shirt!!! (my boy LOVES pink :)

These gentle moments are ones I treasure!

No comments:

Post a Comment