My name is Meri Krassner and I want to talk about what happened when we found out that, unlike most newborns, our new baby wasn’t perfect. He was odd looking with an audible heart murmur and a pleat in the back of his head. Every pregnancy involves a dream, and a handicapped baby is the death of that dream. It’s devastating for everyone – you, your partner, your other children, your parents, your siblings, your friends. Even some of the doctors disappear rather than acknowledge that they have absolutely nothing to tell you. No one can make it better, and there are no procedures, no medications to make it all go away.
Merri Krassner
Daniel was born with many, many problems. He had a closed sagittal suture, heart defects, and idiopathic infantile scoliosis (which means they had no idea why he had it).
He had his first surgery when he was three months old, to remove the fused piece of skull. That was when we realized he couldn’t see anything but light and dark. He began Early Intervention at the Jewish Guild for the Blind. Early Intervention services are set up to work with infants and toddlers to take advantage of the developing brain so the children can meet normal milestones. It took 18 months of intensive vision therapy to get Daniel’s optic nerve to respond, and from there Daniel developed useful vision. We escaped the setback of full blindness. I can never repay his Early Intervention therapists for that gift. It has made his life and our lives so much easier, not to mention that it resulted in savings for the state since he didn’t, and doesn’t, need a one-to-one paraprofessional in his classroom.
But Daniel was still not hitting the milestones the other children in the program were managing. He was mentally retarded. This was absolutely devastating news. It was something our families had no experience with.
Daniel is a tribute to what the system can do for a disabled child. Early Intervention vision therapy as well as physical, occupational, and speech therapies have made a massive difference in his life, and therefore ours. His prognosis at birth was equivalent to “lettuce leaf,” but the therapists dug in, and he finally sat up, he started walking at 2 ½, and finally at 7 ½ he started to speak – a few words to start but now he has quite the vocabulary.
Daniel is labor intensive –less than he used to be but he still requires minding. There were times in his life when he didn’t sleep more than 3 hours a night. If we hadn’t been able to leave him with overnight respite care occasionally so that we could recuperate, we might have been hospitalized ourselves. Daniel is with us 365 days a year except for a few respite weekends and 12 days every summer when he goes to camp. Camp is great for him, but really it is for us. It gives us a chance to miss him, and to take a breath. To have uninterrupted conversations, to go out together without arranging for coverage for him, to feel like human beings.
Daniel is now age 22 and attends an adult day program that he loves. He checks with us all weekend to make sure that he will be going come Monday. He knows his peers, he has a serious crush on one of his staff, and he loves going out in the community. The staffing is at a level that allows the participants to go to various work sites safely. They learn how to travel through the city, how to comport themselves in public, and how to start and finish a task. The work they do at these sites is important. There is no way the Salvation Army can pay to have people stack cans on their shelves. Who else is going to take pastries from Starbucks and bring them to God’s Love We Deliver? Who else is going to bag food at the food pantry or bring meals to the elderly at the Encore Senior Center? The Governor’s proposed budget cuts will result in greatly reduced staffing. Without the proper staffing, day programs will have to keep the participants in their rooms all day. They will sit there and stagnate. It won’t be Willowbrook but it will be pretty awful, nonetheless.
Daniel has accomplished an enormous amount, and unlike me, he is willing to keep trying even when an activity is difficult for him. He has mastered many tasks but he is cognitively impaired. He doesn’t understand the reason that he must watch out for cars. He hands over his dollar to buy the Daily News (his favorite paper), but he walks away without his change because he doesn’t really understand the transaction: he just mimics the activity. His life is circumscribed by his dependence on his caregivers. He needs someone to watch over him on the street, to make his food, to wipe him after using the toilet.
One of the most excruciating things about being the parent of a child with disabilities is how helpless one feels. So much is out of your control. To paraphrase an article I once read, he may get better but he’ll never get well. He does get better but he’ll never be like you and me. And for that reason, it is impossible to rest easy about the future.
I have clung to the idea that when my husband and I are no longer able to take care of Daniel, he will go to live in a group home where the residents flourish and are happy and productive. I have seen those group homes; I have friends whose children live in them now. I need there to be a place like that when Daniel needs it.
The best I can hope for is to find or create a group home setting for him. We must separate from him. How awful it would be for him to lose his home in an emergency if, God forbid, something happened to us. I’ve heard more than one story about some elderly parent showing up at an agency saying “I can’t handle my child anymore; I’m 83 and it’s too much for me.”
We are not in that situation yet, but the day will come when he will need to live somewhere. Will that home be there? For the last several years, there has been virtually no money in the budget for new residences, and there is none in this proposed budget, either. If there is no development, where will people like Daniel go?
After Daniel was born I saw a production of Streetcar Named Desire, and when Blanche said, “I have always depended on the kindness of strangers,” I started sobbing out of proportion to what was happening in the movie – that line hit home like no other. I was now dependent on the kindness of strangers, and I am afraid that strangers will no longer be dependable. It is too easy to make cuts in programs for a boy like Daniel. He does not participate in the political process; he has no idea of government. He trusts people because we protect him from the people who disdain the disabled, and we have made sure he gets what he needs. What will happen when we aren’t around, and the agencies that look after his interests are stripped bare of resources? Who will make sure he is okay? He isn’t even capable of begging on the street corner, God forbid.
New York has a track record of being a good place to be if one finds oneself in our situation. I cannot overemphasize how vital it is for parents like me to know that the state won’t abandon us in the future. The newspapers these days are full of politicians who talk as though government programs are the Devil’s work and cutting programs is a form of heroism. That is making your bones on the backs of the most vulnerable and it is despicable. True heroism would be acknowledging that it isn’t the disabled who are the cause of the recession or the solution either. People like Daniel are not a line item in the budget that should have a red pencil drawn through it. Why isn’t anyone focusing on increasing revenue? The current approach leads to more misery. Daniel and his peers cannot be treated like human flotsam. I can’t speak for others but for me this is a life or death issue.
Thank you very much.