“Excuse me?” I asked. I absolutely must have misheard.
He repeated it. Nope, I had heard correctly. I took another moment to process the words.
“So how much do you get paid for taking care of Isaac? He has autism so it’s got to be close to $40,000 a year, right?”
My eyes spoke before I had a chance to utter any audible word.
“Seriously?” I finally replied. “No, we don’t get any money for taking care of our son.”
“Oh really, well you get lots of services then I guess.” Oh my good gravy, was this guy for real? I scanned his face. Sadly, he was asking honest questions.
There is for some a thought that those who have profound special needs get special treatment. Some people think that those with special needs get an inordinate amount of special treatment. Let me be the first to clear this up. They don’t. It really doesn’t make sense historically or culturally to suppose that they would. Think about it. What society or time period have you ever studied that has or had a reputation of giving too much to those who have special needs and cannot work or earn for themselves? Humans are by nature selfish. We fight the urge, but we as a species have never been known to be overly kind to the weakest around us.
As society has become more cultured, laws have been enacted to make sure that those with special needs have some protections and services. Think about that concept. Laws are responses to identified problems and inequities. If society had been doing a grand job at taking care of its special needs population, laws mandating and specifying services would not need to exist.
Services though are a double-edged sword. I speak obviously from a personal point of view as Isaac’s mama. I am grateful for services for my son. I fight for services for my son. I detest services for my son.
Isaac has a lot of needs. I have never shied away from that fact. His needs mandate that I seek services of extra incontinence supplies, the assistance of a personal care aide and a variety of therapeutic and medical care. Each of these services benefits Isaac. He needs incontinence supplies to keep him clean at night. He needs a personal care aid to maintain eyes on him at all times so his safety is ensured. Isaac certainly needs to be followed by professionals to meet the medical and developmental aspects of his autism. I am grateful that he qualifies for each of these services. I have fought tooth and nail for each of them over the years.
Still, I hate these services and I would get rid of any and all of them if I could. Help always comes at a price. The usual price nowadays is privacy. In order for Isaac to get any of these services, I have to open my home up again and again and again to supervisors and nurses and supply representatives. My house becomes other people’s job site. Stop for a moment and process that.
Your home is your safe spot. It is the physical representation of everything you are. You surround yourself with art, pictures, memories, hopes, preferences, hobbies and passions. Your home is yourself. You retreat to your home and hope to break away from the rest of the world. There are demands there but they are demands that you create for yourself because of what is important to you. A home is a place where you can drop away any pretense and be your true self. It is a haven for you and for those you hold most dear. It is a safe place to refresh before you venture back into the world at large.
Isaac’s services, though necessary to him, demand our privacy in exchange for aid. Case managers call and make appointments because they must see Isaac in his home. We must be interviewed from time to time to make sure that Isaac’s needs are still substantial enough to warrant services. Delivery people must personally deliver supplies into my hands and I must sign off on those supplies. That means more appointments. Therapeutic appointments are kept here in my home mandating therapists and supervisors each make appointments and come at regular intervals. The personal care aide is here every weekday on a regular schedule to help with Isaac.
I knew it was bad when we started calling the driveway the parking lot. Honesty spoke. Our driveway was a parking lot and our home was the place of the business of Isaac’s care. I knew this the first time a therapist came in without knocking and reported for work. There are not words to say how invasive that was and how horrible it is to give up all privacy.
When services are implemented so heavily into your home, all privacy is gone. Someone is there to observe almost every moment. You are observed in how you speak to your children, in how you handle chores, in how you manage behavioral shaping, in your values and traditions, in your marriage, in your parenting, on your bad days, when you or someone else in the house is sick, or frustrated or disappointed. In every emotion, in every moment, in every action, in your home, you are being observed. And generally notes are being taken too. Most of these folks are wonderful people but they just don’t belong here. They are needed here…but they do not belong. They know it too. Its awkward being in someone’s house as the family is assembling together after a hard day. It’s strange to sit with them at dinner and to hear the intimacy of their dinner conversation. The situation plays like a puzzle piece that doesn’t quite fit. Aid is needed, but the presence of anyone other than your family in certain moments is uncomfortable for everyone.
I do not view Isaac’s services as a special privilege and would certainly not request them if they were not needed. This is not us demanding special treatment because we think we can get it. It’s about services being given when they are necessary. Services are by no means free though they cost us no money. They cost much more than that. They cost us privacy.