Friday, June 20, 2014


Hmm, just doesn't have quite the same ring to it. But as much as writing this blog has proven to be a valuable outlet for my thoughts, my family time has to come first, and this has been a week when they needed more of me.

Last Sunday we made the most of Father's Day despite Papa Bear having to work. He and Sunshine enjoyed their movie date, and my attempt at a dairy free casserole actually proved to be a success! By dinner time, however, Sunshine was definitely not acting like herself, and was found to be running a low grade fever. I hate for the kids to be sick any time, but this was particularly unfortunate timing as she was signed up for our parish's Vacation Bible School this week. At first it was nothing to warrant a trip to the doctor, just enough to make her feel bad and necessitate staying home from VBS, but Monday night into Tuesday she came in our bed with violent chills and a couple hours later she was still in the 100's even with ibuprofen. So Papa Bear took her to the nearby walk-in clinic where she was fouond to have an ear infection and upper respiratory infection.

After starting antibiotics she was finally well enough to attend on Thursday and Friday; disappointed that she missed so much, but she made the most of the time she had. She had lots of fun, and even talked me into letting her do her religious ed. in class at church this upcoming school year instead of at home like we did for first grade. Religion will still, of course, be a part of our homeschool day; and I was already considering letting her sign up for Children's Choir which she can do the same afternoon back to back, so getting her to and from class won't be any extra work. I'm glad we did it at home while she and I were both getting our homeshool legs under us, but after three years of preschool I think it will be good to get her back in a classroom setting part time to maintain the practice of how to work and behave in a class with a teacher other than me. And having belonged to this church parish literally my whole life, I know I can trust her teachers; some have been teaching since I was a kid, and many are people Papa Bear and I grew up with!

Fidget has had an -- umm, lets just say interesting -- week this week. Though I admit I was skeptical when his clinical supervisor suggested removing casein from his diet, a couple of absentminded exposures have proven that he really does better when I ensure he aviods it. His meltdowns are not only more frequent but also more severe after dairy exposure. His other negative behaviors increase as well, particularly the self-injurious and destructive sensory seeking behaviors. We use an enclosed bed tent to keep him safe at night, and a couple of days ago he managed to rip a hole in one of the mesh sides that was so big he could fit through it! So at 10:15 that night I was rearranging the kids' beds to block that side, and since we've been otherwise quite happy with this bed tent I'm trying to figure out the best plan for repairing & reinforcing it.

He is still only getting speech therapy (we are STILL waiting for our early inntervention OT to contact us), but I am amazed how much improvement he has seen with that one hour a week. Not only in expressive language but receptive as well. As expected he doesn't always respond or follow commands like a neurotypical child his age would, so it often catches me off guard when he does give an appropriate response. Usually it's a case of me making conversation as I always have, asking f he wants something or is ready to do something, go somewhere. I'm not sure that he's ever given a yes response; but often he'll tell me "no" without even stopping what he's doing, as if it is something he has always done. He is identifying pictures in books more often, and the fact that he will call someone's name to get their attention is HUGE. Before starting ST I probaby hadn't heard "mama" more than a couple times in about a year, and he was only saying his versions of "daddy" and his sister's name to acknowledge their presence or identify them in a photo, not to initiate an interaction.

He's also started asking to use the potty in the last couple weeks! He is still a long way from potty training: he doesn't have the requisite motor skills to handle the clothing aspects, and he does't understand yet to hold it when he needs to go or to fully empty when going, but if we're already in the bathroom brushing teeth or taking a bath, he will ask to sit on the potty and usually makes at least a little pee. Then of course he likes to close the lid and flush the toilet; truth be told I think his main motivation is that he enjoys flushing. Hopefully once we start ABA therapy we can work on the skills that will be necessary for potty training at some point in the future.

And speaking of ABA, we got word this week that insurance has approved our request for ABA coverage. I submitted the many pages of necessary informed consent forms, so now we're just waiting on the scheduling department to build his schedule. And here at home, when I haven't been busy taking care of the kids or doing other work, I'm trying to prepare the house for the constant influx of therapists we will soon have. Twice a day, six days a week will be quite an adjustment!

God willing, the next week or so should be a bit calmer around here. Sunshine needs to go to her pediatrician for a pre-camp physical, but otherwise should be able to just stay around the house and enjoy being with each other.

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