@Niksmom – You describe one of my deepest wishes. I can live with a lot of things if I just know that my kids will be OK. I tend to not think more than a couple of days ahead, but the other day for some reason I slipped into thinking about us 35 years from now (at about the same age my dad is now) and worrying about the J-Man living independently and having people to look out for him when the time comes someday when Mary and I are no longer around. It was sobering and it made me very, very emotional. I realized how completely unprepared I am to think about that. Peace and trust are some of the best things to wish for, but perhaps the most elusive to find.

@JennieB – While I just said I want to know that things will be OK, I don’t want to know about anything that won’t be. I’m not in the mood for more fear and worry right now. We’ve found some ways to take brief respites here and there lately (an hour or two at a time perhaps), and that’s helped. The J-Man was with Mary’s parents all of last week. That was a sort of break from autism. We spent the whole week catching up on a thousand chores around the house, so it’s not like we got to lounge around, but it helped to be able to let all the forces I marshall everyday take a week off. For probably the last 3-4 months I’ve often wanted to just switch off for a while.

@Barbara – Thanks for the info and encouragement. I think I found the answer that was right for me this year. Whether I ‘got’ what I wanted is probably not the point. Perhaps it’s the pursuit of the answer that’s the gift.

@abby – Yeah, I think “don’t easily fit down a chimney” accurately describes the kinds of things most of us look for each day. I’d definitely settle for some respite and time out of the house with Mary! And the alcohol and coffee, too! I hear you about some of the gifts. Most of our family is to varying degrees clued in now or just asks us specifically what to get. I appreciate when people try to understand him and his needs, however it turns out.

@magicdrgn – Money definitely makes things easier. We took some money we saved from cutting back in other areas and hired a babysitter to come in a few hours during the week while we worked or ran errands or tried to get things done around the house or just got a break for a couple of hours. That’s been a godsend. It’s amazing how much that helps. Hope the seizure problems are OK.

@Debby – Our tree turned into an OK success. The J-Man mostly just went over and ran a few branches between his fingers and flicked the lights. He seemed to like to look at it and occasionally fiddle with a couple of ornaments. The tree may be mostly for my benefit, at least for now. The baby loved it, and obviously we’re developing traditions for both kids now. This year the holidays weren’t interesting to them in and of itself. Next year may be quite different. I imagine things may change quite a bit.

Let me also say that I went to tears when I read your last line. The first time the J-Man said that to me was at bedtime and he said it in his own halting, syllable-at-a-time way. I was all but sobbing when I put him to bed. I got out of his room and collapsed into a puddle in the floor of another room. I still get teary thinking about it. It’s like a big bucket of manna when things like that happen.

I consider it very healthy to take a holiday break from therapy. Usually an interruption has to be handled specifically with the insurance coverage. The change in schedule can take some of the stress off parents, but depends on whether the child notices. Being school age or not is another factor. Childcare if parents don’t have same days off. Not an easy decision.

I always dreamed my child’s Christmas would be wonderous just like mine. That they would wake up, come downstairs to a slew of toys and just bask in the magic of Santa. Then we’d have family time and curl up on the couch and watch claymation Christmas movies.

It’s not that way, as you well know. I don’t really get into it. I bought the gifts and family will be here…but it won’t be wonderous for us. It will probably be complete and utter sensory overload. But I’ll do everything I can to muster the requisite “joy” and “cheer” to give him as much of a miracle as he can appreciate.

As for me. All I want for Christmas is to hear the words “I love you, Mommy”.

OK–what do I want for Christmas? For Hallie to be able to socialize/communicate better with her friends. For her sensory system to stay regulated. For her to eat more normally. All things that don’t easily fit down a chimney and into a stocking, in other words. I’ll settle for a date out with S. and a well stocked wine cellar/coffee bar.

Hang in there, guys. It sounds like it’s tough going right now and you have our hugs and thoughts.

Your sentimentality about Christmas is endearing.

I’ve linked a blog with a daily toy review – directed at children with diagnoses – top box – the Seasonal Aisle, middle column, my blog.

I bet you have an answer by 3 weeks from now. Very Merry!