The day started out well but just as I was getting the snow boots on to retrieve Paul from the bus at 11:00am the phone was ringing. It was Hanna`s school, "girl issues" AGAIN, we just went through this less then two weeks ago, Hanna has only been in school two and a half hours this week, and there is no hope for the next two days, oh my goodness my headache is huge. They have a vacation day on Monday and then just to add to the fun she has an orthodontist appointment on Tuesday. Hanna is here going completely nuts while I and the Public Health Nurse are doing Paul`s PCA evaluation. The good thing about her going nuts is that someone who may be of some help with dealing with her behavior is getting to see it first hand so it is not just a crazy mom telling them that this is happening.
The results of that evaluation are that with the new rules Paul loses one and a half PCA hours a day and given his diagnosis we need to get the ball rolling to put him on waiver services. That means more paperwork, meetings, and of course a waiver spot needs to be found for him. I did not plan on doing this with a five year old, but here we are.
Meanwhile, since Hanna was demonstrating why we need ten hours a day of PCA service and because she does not have the diagnosis to get those hours we did a bit of brainstorming to figure out what to do with that situation. The options are very complicated and will require more paperwork, meetings, and a different waiver spot for her. This is much more urgent for resolution as her behavior is very stressful for everyone in the family and goodness knows what we will do without lots of help. Hanna is at high risk for out-of-home placement so someone had better start taking this situation seriously.
Then there is the matter of dealing with Allen`s needs as well, he is just hanging out there, sometimes I feel like we are putting so much time and effort into dealing with Hanna drama that he gets lost in the shuffle. We do get around to taking care of him as well. It is just nice to have a kid who takes things at a slower pace. That will be, yeah you guessed it more paperwork, meetings, and another waiver spot.
All of this is creating an overwhelming amount of work to be done. I am so thankful that I am able to stay home and do all of this stuff for these kids. If I had another job I would never be able to get this done. Before I can even begin to tackle all of this I have to deal with Hanna and all of her very nutty behavior.
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I don't see how anybody working full time can raise special needs kids. I am glad you have the PCAs to at least take some of the pressure off. I love reading your blog.
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