Christmas holidays

From about the week before Thanksgiving to a week after the new year things can get a little bumpy at my house. There are plenty of good moments, but we certainly see an increase in bumps and harder moments.

Will is doing so great this year, but the sensory overload and extra demands are making it a little rougher. Evidenced by his happy thought "I want to kill myself" tonight. While I don't doubt for a second that he is struggling with happy thoughts I do know that the majority of his day is spent much more happy than that. Especially when there are very low demands being placed on him.

Because of a new law stating that a program review of an IEP is held if a child has three or more restraints/seclusions we had ours Friday afternoon. During this meeting I learned some very disturbing/alarming news about Will. It appears that there have been at least 2 occasions when the OT has noticed his lips and fingernails turn blue. He is not oxygenating as he should. She has also noticed from his gait that he seems to be in quite a bit of discomfort- most likely in his joints. She also discussed that because his muscle tone is so low (I thought it had improved) that he really is as exhausted as he says he is. He really does only have energy when it is a preferred activity. He is saving his small amount of energy for the fun stuff.

What does all that mean? Well, it means a call to his doctor. It means we start at the beginning and check for everything. Do a full work up, including checking for lead and copper as well as deficiencies. Just when I think he has enough to deal with.....

I am so very grateful the OT came to the meeting Friday but I have to admit that I'm a little (quite a lot actually) angry this wasn't brought to my attention earlier. This is my child's health...he's turning blue! Doesn't this concern the school enough to contact and communicate with the parent?

But let's end this post on a happy note: we had our family Christmas party (moms side) this Saturday. Will did such a great job, including tolerating me reminding him to thank everyone for presents after he already had -sometimes more than once! His cousin sat with him while he played minecraft, Will ate dinner with the whole family and not just the garlic bread! So proud of my boy....oh I got a great gift in our Yankee swap too: a redneck sipper cup, a redneck wine glass, a woozie (wine glass cozy) and a single serving of wine in a box. All dressed up with bubble wrap and packaged in a popcorn tin! Now that's what this momma needed....