Midnite Angel's Haven

Sometimes people ask me, "How do you do it?" "I don't know if I could do it?" These questions annoy me. For one thing, I have never been too sure what "it" is. But I have finally come up with an answer. I do "it" by being selfish. In fact, I have decided that selfishness is a highly desirable--perhaps essential--personality trait for the mother of a differently abled child. When I found out that my son had cerebral palsy, which meant he would need extra care, I assumed that as his mother, I would cheerfully provide that care. I measured myself against the stereotype of a devoted, saintly mother, living night and day in service to her stricken child. And, inevitably, I found myself falling far short of my imaginged role. I got tired, yelled at my child, and occasionally wished for the peace of a deserted island. I found that my excessive attention to my son's needs led to a loss of perspective. Most of my life was lived through my child; his succeses and failures became my own. Neither of us could succeed or fail on our own merits. In many ways, I was more dependent on my son than he was on me. As Damien grows older it is becoming more difficult and challenging to cope on a day to day basis. You have a child with a mental age of about 4 inside of a 13 yr old body. We have hit the puberty stage!! What a challenge. I seem to have run into a brick wall with the medical community. No one seems to have any good answers as to how to deal with this stage. So I am floundering on my own. If anything has frustrated me the most, it is having to deal with Damien primarily on my own...for so many years I thought I could do it all myself, and have in fact done it. The people around me just assume that I can and will handle him all alone. It is very difficult for me to ask for help. But I am finding that it is greatly needed. The "system" also seems to frustrate me. There seem to be many programs for infants, and preschoolers with special needs, and adults, but the between the ages of about 10-18, they appear to disappear. Perhaps it is the area I am in, I don't know. But the help and services seem to disappear. I at times feel like I can no longer do this...that I don't want to be Damien's mother anymore, but I push that thought out of my head fearing that it makes me a "bad" mother. Or does it? I am going to continue this section sort of like a journal, confronting my feelings from day to day about this latest stage in Damien's life...perhaps it will help another parent who may be having the same feelings.....
May 2001

It's been awhile since I've added to this section. This past year has been most difficult. We have both been through must emotional stress. I used to get some relief when my ex-husband took him on the weekends. That all stopped when my ex was arrested and placed in jail about 11 mos ago. Since that time it has just been Damien and me. I don't get much in the way of respite anymore. With all that has gone on, and the fact that he is getting bigger and stronger, it's just become overwhelming. I have had to do alot of thinking, and make a very difficult decision to place Damien into residential placement. I feel that I am just not effective any longer as a parent to him. He will be able to learn how to be much more independent at a group home, and the time we spend together on the weekends I feel will be more relaxed and enjoyable, when I can get a break. It has been a heartbreaking decision for me and one in which I have put much thought into. He will be placed by the end of the summer. I am trying to prepare Damien as best I can. He really doesn't grasp the concept. I am sure the adjustment will be difficult for both of us, although as we always do, we will manage, and somehow come out stronger for it. I will continue this journey into my thoughts as the days go by.

This page hosted by Get your own Free Home Page