When I initially found out that my son Ben had a serious heart defect, I was devastated. Not only did I not know what it meant in terms of life and death, which was scary, but more to the point the 'scary thing' had happened to me, i.e. My soon to be born baby was not perfect. My general expectation of what life would bring was disrupted. I felt threatened. My illusion that life was something I controlled was shattered beyond how it had ever been shattered before. My life would never be the same. I knew that much. But I did not welcome the change.
What I have learned from 20+ years with Ben is that living with persons who have disabilities, living with them in peace and acceptance is a life-long endeavor to accept life and with it all the brokenness that life inevitably brings. -- And that makes it sound so pretty and virtuous, that we might almost all wish that we dealt with at least ten persons with special needs daily so we could all achieve this wisdom and peace. -- It is not that pretty. It is a moment by moment realization of one's own brokenness in dealing with another person who does not have the judgment to make adequate decisions for himself, and who sometimes makes time consuming or costly or just strange decisions after which you get to pick up the pieces.(And that is of course assuming that it is ALL about you!!)
Actually my paragraph above made it sound a whole lot more broken than it is. I think, in essence, living with special needs is a constant journey of fixing that which could be done better and accepting the rest with gratitude -- all the while remembering that it is indeed ANOTHER PERSON you are dealing with, so all your fixing and accepting needs to expand far enough to respect and uplift another person's wishes and desires, perhaps even above your own.
That is not my forte. At root I am a perfectionist. My Ph. D. Is in theoretical nuclear structure. What I really like is complexity. I am completely detail oriented when I am pleasantly engaged with a topic that interests me -- my preference is to be immersed (nay drowned) in the esoteric. Checking for jam spots on shirts before going out (for the 1000th time) is not my forte. In fact, repeating that which I think I have already made clear to be my express wish can be a great irritant to me.
In short, I am a not particularly patient person at the root of my being. Just ask my older kids. I was the kind of mom who wanted the dishes cleared and kitchen clean every time after every meal, rooms orderly, essays for school written early, etc. Perfection in grades was not necessary, but doing your best, working hard, being consistently responsible, timely, and pulling your own load were definitely my expectations of the kids. -- Perhaps every mom dreams of that, but I know, not every mom stubbornly insists on it the way I tried to. That worked sort of OK for my regular kids who are all independent adults and who have, by now, derived their own version (or rejection) of whatever I tried to instill in them. --- However, an expectation of performance can be a deadly trap to get into in dealing with Benjamin.
Benjamin has achieved a great deal of independence in many areas, like dressing and self hygiene, but with releasing those areas to him comes a cost, loss of control, and with that loss of control a certain cost. For example he chooses what to wear on a given day, but then, as a consequence, I might spot -- at the last minute as we are ready to move out the door -- shorts in January, or huge yogurt stains running down his shirt. -- His personal hygiene is good for the most part, but a couple of months back, I realized that his clothes never made it to the washer and dryer any more. He was recycling his favorite outfits to wear over and over again. Another time I noted that that he no longer was brushing his teeth, hence I needed to step back into a few areas where I had happily turned the responsibility over to him.
And with every discovery of where he 'falls short', every time I have to reel in his independence and explain, exhort, and impress on him the way things need to be done, I see, not only reluctance to comply, but also pain in his eyes. He winces at being corrected (yes, I know we ALL do!!) because he tries so hard (OCD) to do what he can to be just like everyone else, and having it pointed out (as if life doesn't poke him with it almost every minute of the day anyways) is immensely painful because he knows how short he falls already and how difficult it is for him to achieve even just a tiny fraction of the kind of independence that his siblings so easily achieved for themselves years ago. -- In the moment, it is not difficult for me to stop, ask him to take off the jam stained shirt and have him go back and get another one. But every single time, after that moment, when I see his reluctance, his closing in on himself, his indisputable sense of inadequacy, I feel broken too, and I wonder why life is so hurried and busy that I always discover those stained shirts at the last minute, as we rush out the door. There HAS to be a better, gentler, more understanding way that does not include this rat-raced feeling that we are always in a rush to get to the NEXT thing.
When Benjamin leaves the house in the morning, he says good bye to all his stuffed animals, he pets each cat, he carefully zips up his coat, puts on his backpack, makes sure all the straps are comfortable, and then he leisurely makes it out the door while his driven mother tries to look the other way, lest she ... eh... eh... bursts!
Life with special needs ever holds in tension the stress and hurry and endless tasks that are involved for any adult in America of holding a job that demands your all, combined with the necessary slowing down that is required when dealing with a person whose mental faculties and general character are not capable of doing anything fast. Ben needs to understand what we are doing next, where we are going, why, and how everything is going to pan out, before things happen. He is neither motivated, nor driven, like me. Why should he be? What is the rush?
His sense of time is limited. He always says, "Next Friday is my birthday", and while it may be true that this year his birthday is on a Friday (he DOES have that fact down), his birthday is in September and it is currently May. Knowing that, knowing HOW he speaks about time and what understanding he has of the future, took me years to understand. I used to always correct that, "yes, your birthday is on "a" Friday, but not "next" Friday." Never mind. Now I just nod and say yes, your birthday is on a Friday. But I do not correct the 'next'. That word does not mean to him what it means to me.
What made me think of brokenness when I started writing this was the many incidents that occur where hindsight makes me feel broken -- makes me feel like the person who doesn't have the necessary skills and forbearance to get through life contentedly. Many of those occur because of my hurriedness alone. For this past year, we have been getting up at 5:15 to 5:30 on work/school mornings because Ben's school bus leaves at 6:37. Ben needs 1 hour to get up, get dressed and eat breakfast and walk 3 minutes to the bus stop.
I put my stuff by the door, so I don't forget it (that includes purse, keys, lunch, computer, etc for work). We get ready to go and suddenly I cannot find my keys Usually they are in my canvas bag, but there is no room today because I am bringing donuts to the lab for a special occasion. Ben has gone outside and taken the kitchen trash with him (as requested) and he is waiting by the car. I tear through the house. Where are those keys? I could have SWORN I put them in my purse by by the door.
Well, Ben decided to be helpful, so when I finally come outside to check on him and make sure he is still where I asked him to be, I find that he has my key ring hooked on the belt loop on his pants. He wanted to help by locking the door, and more to the point, he always wanted his own keys. We are late now, and I am experiencing a combination of relief and annoyance, since, once again, he took my 'stuff' and moved it some place where I could not find it. I.e. I am organized, I have a million things to think of in the morning in order to make this 5:15 am deal work (FOR BEN who is going to his transition work program) and he grabs my keys and throws off my entire game -- which of course would be so perfect if only other people did not step in and mess it up.-- This little incident resulted in my getting him a house key, which then resulted in him learning to lock and unlock the door to the house, which resulted in him being able to go on the special needs bus and coming home and letting himself into the house with his key, which means that now, if I am running 10 minutes behind the bus, he can still get in the house. -- A major feat!!
Summer has just begun for us, teaching is over (next week is final's week and then I am done for the semester). The goal, the dream, my wish, is for a new more contented slower pace, that respects and uplifts the needs and desires of both of us in our symbiotic existence.
But if I have learned anything about living with special needs it is that while I slowly learn to recognize some of his needs and wants and hopefully foster a more meaningful environment for him and for me to live contentedly in, he is --to me-- a mystery precisely because we are so very differently driven. I often see his needs in hindsight and try to repair the damage I do by misunderstanding him.
One person in a book described the experience of having cognitive disabilities this way. You walk into a store and go to the customer service desk. You hand the clerk a jacket. She takes it and quickly scans the tag, opens the cash drawer and voila! She hands you back your $83.35 cents. -- You take it, and you walk out of the store, frustrated. What you really wanted was to explain that the zipper was broken and you wanted an exchange. But here you are with the money. -- The clerk was much faster than you, you never had a chance to explain. --- So with Ben. He has many ideas, many thoughts, but he often gets bowled over by people who are fast, people who can talk well, people who mean well (like me). It is the few who take the time to stop to hear what it is he really wants.
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