Sometimes I get so tired of fighting. I know I am fighting for my son, so I keep going; but, it would be so nice to just live and enjoy and not always be in the midst of conflict. I understand the main culprit of these conflicts; it is almost always money, money, money. Nobody has any and everybody needs to cut. I do understand and I do support cuts. I am not saying I want mine when it is necessary to cut everyone back. I am saying to government agencies,”STOP all the micromanaging!” Your job is to make the cuts and make the budget work. Your job is not to tell me what brand of pull ups we use. Yes, that is what they are doing. They decided that the budget needs to be cut and then have proceeded to tell us what brand of pull-ups and brand of diapers we can use. It is so obvious that whoever is making these decisions has not a clue about what they are doing because they are making decisions based solely on price. Please give us a budget and let us make the brand choices. If all we get are a couple packages of pull-ups and diapers that work, fine, let it be. We can purchase more on our own to get the quantity we need. We are fine with that. What we are not fine with are inferior crappy diapers and pull-ups that don’t work. How is that any help? A pile of substandard diapers and pull-ups are not useful. We need products that don’t leak on a regular basis, and pull-ups without tabs are not going to happen. Parker wears orthotics and taking off his shoes and pants and underwear every time we need to change pull-ups is not practical. It has taken many months of trying various products to find what works and what doesn’t work. We didn’t pick brands for the cute little characters on the front! We actually tried out the products and chose based on success of the products. Some pencil pusher sitting at a desk, having no experience with the products or the people requiring the products can not, nor should he make any such specific decision. Again, give us a budget and let us, the users, make the specific decisions. If they were to stop micromanaging the situation, they could make personnel cut backs because they wouldn’t have so much to do. Hey, I just helped with the budget and I didn’t tell them who to cut or how to do their job. Please, don’t tell me how to do my job!
This leads me to fight number 2. I have a mediation phone call next week to mediate between Medicaid and myself over occupational therapy services. Medicaid stated that we should be doing more OT at home and not need so much time with a therapist. Oh darn, I didn’t go to school for that! Is it really practical to think that a parent can do an equally good job with the child’s OT as the therapist that went to school to specialize in that area? No, of course not! Otherwise, anyone could apply to be a therapist regardless of training. Parker does not get much OT in school because they do most OT in class during art, which Parker hates, and he is not cooperative to do something he hates doing. In school, they are not allowed to work on practical self help skills like dressing, toileting, and oral motor exercises. They can do some eating skills, but, not much is done in this area. They also don’t have expertise in sensory techniques which his after school OT does with him. With all his sensory issues like tactile defensiveness and a need to feel where his body is in space, he needs the sensory therapy. In fact, since getting his sensory therapy, he has been making more progress in gross and fine motor skills. He is finally able to walk in bare feet, is throwing beanbags and balls, is willing to touch more textures, is walking so much better, has begun standing without assistance and is eating more textures and is eating faster and doing more self feeding. I attribute these gains to his good OT and PT. We do lots of therapy at home to follow through on what he gets in the clinic. We do his mouth exercises, stretches, play games that reinforce skills, and walk with him. We do not have a gym with all the swings and equipment he uses at therapy. Also, children work with therapists differently than they do with mom or dad. One thing I keep hearing is that he shouldn’t need much outside therapy because he should be getting it in school. Yeah, well the school says that he should only receive minimal therapy at school, just enough to help him in his learning environment. In fact, next year the school therapy is being reduced to almost none, only 30 minutes a week and only in his classroom with all the other kids and adults. Of course, everything helps, but, there is nothing to replace individual one on one intensive therapy for an hour at a time! So any of the other needs he has need to be addressed through after school therapy. Does it sort of sound like I am getting the run around?
The government and this micromanaging can drive a person nuts and it is very costly to pay people to plan other’s lives. If we could only get them to scale back the control and just figure out the numbers, and then let us do our own planning for ourselves. We know what is best for our own situations. As far as therapy is concerned, if they are not paying for the therapy at school, then it is necessary to pay for it after school. The money comes from the same place; it is just a matter of where it should be applied, through the school environment or through private therapy. He needs the therapies and that is that. I will keep up the good fight as long as it is necessary. I just hope that someday, it is not always necessary!