Some days I just want to enjoy my kids without always having to spend my energy fighting to keep their services in place. It may be school, insurance, county or state programs. I don't know what happened to the word, "service" It seems like many of the organizations that we work with make it their goal to reduce their clients services rather than work to meet the needs of the child. I understand money is short but cutting services that will result in higher costs down the road just doesn't make sense. Sometimes AJ's insurance gets the idea that they should limit his bandages to fifteen total a month. We use more than that in one day. I appeal and we remind them that a hospitalization resulting from an infection will cost more than the monthly bandages.
Since I have many people read this blog, in all fairness I have to state that AJ's school setting has gone beyond what is expected. I have been so impressed with their planning and provision.
For those of you with children with disabilities, you understand the constant battle to keep services in place for our kids. We always have to be on alert for threats to their well being. I'm not asking for extras; just enough to keep us going.
With that said I remind myself, rest in God, rest in God. They really are his battles and I need to go out there like David and fight Goliath but I am not responsible for bringing Goliath down, that's God's responsibility. It's hard to remember when situations get heated but it's the basis for our struggle.