Charades

Charade: a blatant pretense or deception, esp. something so full of pretense as to be a travesty.

Consider the following:

The school district. Jack’s team put together an IEP that purports to meet Jack’s educational needs. Only two years ago Jack received 2 hours of speech therapy, 1 hour of occupational therapy, 1 hour of physical therapy and 2 hours of academic services per week. This year, the team decided that Jack only needs one hour of occupational therapy a month, 2 hours of academic services per week, zero speech therapy hours and zero physical therapy hours. Yet, Jack is the same kid he was 2 years ago, with the same potential and with new, state of the art equipment that has the potential to open up a whole new world of communication for him. Despite Jack’s new state of the art equipment (that the school district played no part in helping us get), the team gave Jack no speech therapy hours to help with his communication skills. But, they do have an IEP in place (that I signed) that gives the illusion – at least to the school district – that they are meeting Jack’s needs.

The DME (durable medical equipment) company. Today, I received a voice mail message asking me to call and set up a time for the RT to come out to the house to check Jack’s vents. This is the same company that argued with us for hours on Christmas Eve before it would come out and replace Jack’s ventilator that completely stopped working. This is the same company that fought me about bringing out a new nebulizer machine when it died on us over a weekend that Jack was receiving breathing treatments every 4 hours because he was so sick. This is the same company that repeatedly makes life difficult every time we call when Jack’s (life sustaining) equipment is not working. Yet, this same company wants to come into my house and invade my privacy for the sole purpose of having its records reflect that Jack’s equipment is working – at least at that point in time.

The nursing agency. Several weeks ago I received a letter from Jack’s nursing agency informing me that there was a recall on the model of ventilator that Jack has. The letter referenced a list of serial numbers for those vents included in the recall, yet failed to attach the list of serial numbers. What I didn’t understand was why the information was even coming from the nursing agency in the first place and not the DME company that supplies and services the ventilators. The letter provided absolutely no useful information to me. It served only to create stress by notifying me of a problem that may or may not apply to my situation and then failed to offer any information on who to contact about resolving the problem.

Each example cited above is a “charade”. Each example constitutes a blatant pretense of being concerned about Jack’s well-being when the reality is - the IEP, the monthly ventilator check and the letter are nothing more than a CYA for each party involved. It has everything to do with protecting themselves and very little to do with taking care of Jack.

After nearly ten years of the charades, I’ve had it. Simply put … I’m tired. I’m physically tired, I’m emotionally tired and I’m tired of being angry all the time. I’m tired of everyone telling me what they are going to do and what I am going to do. I’m tired of giving of my time and energy and I’m tired of having my space invaded just so everyone else looks good on paper – so that everyone but Jack is taken care of.

I’ve decided, after talking with Jack’s DDD support coordinator and someone from our vent dependent program, that I am definitely done with the school district. I can’t realistically be done with the nursing agency or the DME company. However, I can put some space between us. I’m not returning the phone call and I called the nursing agency and informed them that their letter was worthless. Does this make me feel better? Does it make me feel empowered? No, it does not. This isn’t about “winning” or having the last word. It is about not participating in the charade any longer. It’s about conserving my energy so that I can get through the next however many years with my sanity in tact. It’s not my mission in life to change “the system”, however, I can - and do - refuse to promote it.

Without question, there are MANY good people in Jack’s life who do truly care about him and who give it their all to make sure Jack reaches his full potential. These are the people I choose to give my time and my energy to. These are the people who I allow in my house and in my space and these are the people who I will be forever grateful for.

And with that .......

I really am done!